Abstract

ABSTRACT

Ethics in humanitarian services: reflection from the earthquake in Nepal

Ramesh P AACHARYA (Presenting Author)
Tribhuvan University
Nepal

Sanjeeb TIWARI
Tribhuvan University Teaching Hospital
Nepal

Tirtha SHRESTHA
Tribhuvan University Teaching Hospital
Nepal

The Nepal earthquake was one of the biggest natural calamities of the year 2015. This is an attempt to explore the ethical issues involved in the humanitarian services rendered during the crisis and thereafter. The principles of biomedical ethics are discussed in relation to the relief activities immediately following the disaster and the subsequent long-term rehabilitation activities. Incorporating ethical principles into the response to disasters is of vital importance to ensure that healthcare complies with professional norms and ethical standards, and is in tune with the medical needs of the local culture. In crisis situation, beneficence is prioritized, while non-maleficence and autonomy tend to be ignored. Justice, particularly distributive justice, deserves due attention in the context of limited resources, not only during the emergency phase but also during the phases of rehabilitation and planning for the future. The discussion on the principle of justice touches upon public health components such as vulnerable populations, environmental ethics and justice for the future. The principles of biomedical ethics must be respected even when working under crisis conditions, so that the health services rendered comply with professional norms and ethical standards, and are in consonance with the medical aspects of the local culture. Embedding ethical principles in every aspect of healthcare, including disaster preparedness plans, is of vital importance. The ethical challenges faced while responding to disasters can be minimized with the help of the preparedness plan, and by the ongoing orientation of the plan to the authorities concerned including those at the grass-roots level.

 

Exercising autonomous choices

Silviya ALEKSANDROVA-YANKULOVSKA (Presenting Author)
Medical University-Pleven
Bulgaria

Toni VEKOV
Medical University-Pleven
Bulgaria

Aneta MISHEVA
Specialized Cardiological Hospital-Veliko Tarnovo
Bulgaria

Alkan EMIN
Center for Reproductive Medicine "Radost"-Varna
Bulgaria

Polia BOZINOVA
Medical Center "Galileo"-Pleven
Bulgaria

With the introduction of respect for autonomy principle in medicine the informative model of relationships has acquired the status of legal standard. Exercising autonomous choices, however, is often challenged thus transforming a well elaborated legal norm into a common source of ethical dilemmas. The aim of this report is to present and discuss practical difficulties in the application of informed consent legal framework in Bulgaria.  Methods: Cases retrieved through application of adapted METAP methodology for clinical ethics consultation are analysed through the prism of current national and international legal and ethical frameworks. Content analysis of legal documents is performed. Approval of the institutional ethics committee has been obtained.   Results and discussion: The provisions of informed consent are included in Bulgarian Health Act. Medical procedures without consent are possible only in cases when patient’s life is endangered. If the patient/legal representative refuses emergency intervention it still can be performed by decision of the hospital manager. The same is valid for the cases of advance directives. In practice this means that even in autonomous state a patient cannot refuse resuscitation. Another problematic area is the influence of the relatives over patient’s decision. Two such cases will be discussed ? of a 31-year-old woman in premature menopause needing donor’s ova for IFV and of a 76-year-old patient suffering from dizziness episodes who needs closer observation and care. The last case together with a case of a 78-year-old patient whose sons oppose his decision to undergo cardiac operation will be additionally discussed from the prism of the overlapping confidentiality issues.  Conclusion: The available legal framework aids medical professionals but it does not prevent ethical dilemmas. Ethically sound decisions require the clinicians to be familiar with the legal provisions but equally important is the development of ability for moral reasoning. "

 

Professional Courtesy, Equity & Partiality

Kyle ANSTEY (Presenting Author)
Alberta Health Services
Canada

Trevor THEMAN
College of Physicians & Surgeons of Alberta
Canada

Physicians sometimes provide services within the scope of his or her own practice to other health care professionals.  In Canada, such “professional courtesy” is prevalent, but often criticized as constituting improper preferential access to the public healthcare system.  Engaging in professional courtesy is often labelled as an unmanageable conflict of interest: however, granting that a physician’s primary obligation is to existing patients, the nature and management of the conflict deserves further scrutiny.    A  primary obligation to existing patients can be respected if professional courtesies are extended outside normal working hours; any direct or opportunity costs incurred by the treating physician do not delay or displace any current insured patients; and any further care needs identified for the professional extended the courtesy should be addressed based on need and urgency alone.   Accepting that a physician’s primary obligation is to existing patients, what is his or her secondary obligation in a “universal” public healthcare system? Do obligations to equity or stewardship within the public system come before or after considering obligations to one’s colleagues within that system? Physicians might be able to supply impartial moral reasons for preferring the interests of colleagues in specific contexts, such as prioritizing scarce resources in extreme circumstances to maintain the system’s capacity to care for all patients.  However, it may also be both understandable (and even expected) that they act partially by advocating more strongly and more directly for access by his or her colleagues.    We report on how our analysis of these competing obligations informed development of new professional courtesy guidance for physicians in Alberta, Canada.

 

IS CONSUMERISM A FETTER ON MEDICAL ETHICS

Shampa BANERJEE GHOSH
University of Calcutta
India

The rise of consumerism is regarded as one of the fundamental developments shaping health service rendered in present day. There is a conceptual distinction which can be made between the respective roles of the ‘patient’ and the ‘consumer’ of health care. The “patient” has been regarded historically as occupying a subject position, with implications of dependency and unquestioning compliance with medical expertise. By medical ethics, doctors are expected to work in the interest of their patients and this commitment is fundamental. However, this emphasis on social control and the ‘docile’ body is felt to be less appropriate when considering the present day ‘consumer’ of health care services. Health policy initiatives appear to endorse a view of service users who are becoming more ‘empowered’ in their relationships with health professionals. Today, despite this strong tradition of medical ethics, doctors like other professionals have conflict of interest and sometimes breach their fiduciary-like obligation. This paper tries to look into the fact on how and what are the reasons behind the lack of confidence in the “doctor ?patient” relation today and whether the accountability of doctors is questionable in this era of consumerism where “health services” are regarded as “commodity”."

 

Using Humanities to promote empathy and encourage ethical attitudes: A Faculty Development Symposium.

Pablo G. BLASCO (Presenting Author)
SOBRAMFA- Medical Education and Humanism
Brazil

Graziela MORETO (Presenting Author)
SOBRAMFA- Medical Education and Humanism
Brazil

Leo PESSINI
Camilian Institution,
Brazil

Empathy has to do with deeply understanding the other, and is a path to bridge scientific knowledge with compassion for better caring. Can empathy be taught?  To care with empathy implies having an understanding of the human being. In life, the most important attitudes, values, and actions are taught through role modeling and example, a process that acts directly on the learner’s emotions. Because people’s emotions play a specific role in learning attitudes and behavior, educators cannot afford to ignore students’ affective domain.  Although technical knowledge and skills can be acquired through training with little reflective process, it is impossible to refine attitudes, acquire virtues, and incorporate values without reflection. Learning through humanities stimulates a reflective attitude in the learner. On the other hand, faculty face challenges when they teach and have few opportunities to share them and reflect with their peers.  Usually when teachers discuss educational issues with their colleagues, they often spend most of the time talking about problems instead of nurturing themselves. As teachers we need to state new paradigms in education, learn how to share our weakness and frustrations, and find resources for keep up the flame and energy for a better teaching performance. Humanities could be incorporated in faculty development strategies because they provide a useful peer reflective scenario. They also portray a tremendous spectrum of attitudes required for building ethics and professionalism. In here we present a successful experience in faculty development: how to use humanities ?  brief readings, pieces of art, music, and some movie clips - that illustrate complex moral choice and how to use each prompt to stimulate comment and reflection from the audience. Participants will learn how faculty can be creative in using arts and humanities for empowering their teaching and more effectively reaching their students, promoting a reflective attitude among them which helps to build ethical attitudes and professionalism.  Panelists: Speaker 1. With a PhD research in Medical Education and how to use Movies to educate health professionals. He will exemplify how to use Humanities in Medical Education with particular emphasis in some movies. Particular the recent Hannah Arendt movie demonstrates that reflection is the keystone for incorporating ethical attitudes into daily practice. When reflection is lacking physicians lose their ethical perspective: not because they are malicious, but because they keep working, get into the scientific process, neglect details, and ignore the patient’s world. They just stop thinking. Speaker 2. With a PhD research on empathy erosion in medical students. Her research points out how the affective component of empathy declines during the years of medical school. For preventing the empathy erosion, the use of humanities to educate students’ emotions could be a valuable resource in teaching ethics and professionalism.  Speaker 3. A global well known bioethicist will show his broad experience in teaching compassionate care, end-of-life issues and critical decisions in bioethics, and how Humanities can help in this endeavor.  "

 

Using Movie clips to teach Medical Ethics: From emotions to attitudes through Reflection

Pablo G. BLASCO (Presenting Author)
SOBRAMFA- Medical Education and Humanism
Brazil

Ismael RAMIREZ-VILLASEÑOR
ITM- Instituto Tecnologico de Monterrey
Mexico

Graziela MORETO (Presenting Author)
SOBRAMFA- Medical Education and Humanism
Brazil

To care implies having an understanding of the human being. In life, the most important attitudes, values, and actions are taught through role modeling and example, a process that acts directly on the learner’s emotions. Because people’s emotions play a specific role in learning attitudes and behavior, educators cannot afford to ignore students’ affective domain.   Life stories and narratives enhance emotions, and therefore set up the foundation for conveying concepts. Learning through aesthetics -in which cinema is included- stimulates a reflective attitude in the learner.  Movies provide a narrative model framed in emotions and images that are also grounded in the everyday universe and stimulates a reflective attitude in the learner.  They offer a quick and direct teaching scenario in which specific scenes point out important issues and emotions are presented in accessible ways. In this context it makes sense to use movie clips because of their brevity, rapidity and emotional intensity. Bringing clips from different movies, to illustrate or intensify a particular point fits well with the dynamic and emotional nature of students´ experience. As the audiovisual resources are permeating our current culture, opportunities for teaching with cinema are well suited to the learners’ environment.   Fostering reflection is the main goal in the cinematic teaching set. The purpose is not to show students how to incorporate a particular attitude, but rather to promote their reflection. Reflection is the necessary bridge to move from emotions to behavior.   The audience will understand the cinema teaching methodology specially the movie clip variation, and learn how to apply this methodology to help students be more reflective and promote empathic attitudes, enrich professional values, and develop well-rounded qualities as human beings. The authors have developed the Movie Clip Methodology for almost twenty years. References can be found in http://sobramfa.com.br/eng/articles/movies-in-medical-education/)

 

A Mother’s Benevolent Deception: One Mother’s Request to Keep her 16-year-old HIV Positive Son Ignorant of His Medical Status

Whitny BRAUN (Presenting Author)
Loma Linda University
United States

Alex DUBOV
Loma Linda University
United States

This presentation will present the case of a mother in New York City who brought her intellectually delayed 16-year-old son into the emergency department for a recurring ear infection.  She asked to speak to the physician privately and revealed to the physician that her son had been born HIV positive and that she had kept that fact from him for the last sixteen years.  She told him his medications were actually vitamins and had instructed his other physicians in the past to keep his HIV status from him.  The physician felt that this pretense of the boy not being HIV-positive was no longer an act of benevolent deception but potentially a public health issue as the boy may now be sexually active.  The physician wanted to tell the boy his status and educate him about the risks associated with engaging in sexual activity as well as how to manage his own condition, however, the mother was adamant the boy remain ignorant of his condition and threatened to sue the physician and hospital if she disclosed the boy’s condition.  An ethics consultation was requested. As there was not a legal precedent for this type of situation the hospital ethics committee decided to move forward with full transparency in their interactions with the boy.  This case study and presentation will pose the following questions: (1) what are the limits of benevolent deception? (2) what are the ethical obligations of a health care professional to inform a sexually active minor with an infectious disease? And (3) Is it truly to in the interest of the patient to withhold information that will inevitably be revealed and result in potential emotional trauma?

 

Assessment of clinical ethics oversight in Tanzania

Daima BUKINI (Presenting Author)
Muhimbili University of Health and Allied Sciences
Tanzania

Muhsin ABOUD
Muhimbili University of Health and Allied Sciences
Tanzania

In many hospitals in Tanzania ethical dilemmas and conflicts occur. Despite their prevalence, relatively little is known about their magnitude, nature, and how they are resolved, if at all. Moreover, in resource-constrained healthcare institutions, there are higher chances that patients’ rights and privacy may be violated, and patients may not be involved in making decisions about their own health. Interestingly, there are many protocols and frameworks to protect the rights and welfare of human subjects in research, but very little has been done to protect the interests and rights of patients in clinical care. We aim to determine the magnitude and nature of ethical conflicts and dilemmas in healthcare institutions in Dar es Salaam, Tanzania. We also want to explore whether healthcare workers and institutions are adequately prepared to handle ethical conflicts, and thereafter recommend the best approach in handling these issues. A mixed method design to collect the information from healthcare workers and institutions providing clinical care. A survey was conducted to determine the magnitude of the problem and it was followed up with focus group discussions and in-depth interviews with healthcare workers. The construction of the survey questionnaire was guided by the result of the focus group discussions during the Ethics in Research and Clinical Practices workshop in March 2014 in Dar es Salaam, Tanzania. The results  revealed high incidence of clinical ethics conflicts and the lack of any forms of clinical ethics consultations in the participating institutions. We used the results to develop a framework to guide clinical ethics consultation in Tanzania.

 

What Can Ethics Consultation and Committees Contribute to the Development of Appropriate Standard for Physician Participation in Assisted Death?

Alexander CAPRON (Presenting Author)
University of Southern California
United States

Sunita PURI (Presenting Author)
Keck Medical Center of USC
United States

Ethics consultation has been an essential element in the development of legal rules, clinical practices, and ethical standards regarding decisions about care at the end of life ever since 1976 when the New Jersey Supreme Court upheld Karen Ann Quinlan’s parents’ right to have her disconnected from the ventilator provided that the diagnosis was confirmed by a hospital ethics committee. Soon, hospitals across the country were appointing ethics committees (and later, ethics consultants) to help resolve disputes over withdrawal of life-support. Disagreements at first involved physicians rejecting the insistence of patients (using an “instruction” or “appointment” advance directive) or the next-of-kin of incapacitated patients that the length or intensity of care be limited when recovery was unlikely. More recently, this pattern has been reversed, when a medical team concludes the patient will not benefit from further (futile") treatment but the next of kin wants “everything done” to prolong life. Ethics consultants have played a major role through their involvement in such decisions and analysis in developing the relevant ethical and legal principles. Yet, at least in the United States, the legalization of physician participation in assisted suicide has not followed this pattern. Ethics consultation has largely not occurred, since decisions about self-administered death arise in an outpatient context, while consultation is mostly found in institutional settings. In this presentation we argue that ethics consultants and committees, with their familiarity with decisions that lead to patients’ death in the context of withholding or withdrawing treatment, could pay a useful role in addressing the great differences in the rules that apply in this context (e.g., the requirement that the patient act directly and unaided, the necessity of the certainty and imminence of death, the requirement of the patient’s current capacity, and above all, the criminal law context of the act."

 

Applying Motivational Interviewing in End-of-life Care Planning: A pilot study

Helen CHAN (Presenting Author)
The Chinese University of Hong Kong
Hong Kong S.A.R., China

Ps KO
Hospital Authority
Hong Kong S.A.R., China

Pt LAM
United Christian Hospital
Hong Kong S.A.R., China

Objective:  This study attempted to introduce motivational interviewing (MI) into the advance care planning (ACP) process so that clinicians could work with patients through ambivalence towards ACP.  Background: Given the complexity of end-of-life care issues, clinical experience suggests that patients usually remain skeptical about planning for future care in advance. Our previous studies revealed that the level of readiness towards end-of-life care planning varied, as that proposed in the Transtheoretical Model (TTM). MI is a person-centred counselling skill grounded on TTM that aims to engage people in identifying resistance and perceived barriers to behaviour changes. It has been widely applied to promote disease self-management behaviours.  Methods: The MI-tailored ACP programme has been pilot tested in a palliative care clinic. Ten patients have been recruited to the study. In addition to satisfaction survey to examine its feasibility and acceptability, individual semi-structured interviews were conducted with the participants to understand their experiences with the programme. The data collection process is still in progress.  Conclusion: Thus far, the participants shared that the programme enabled them to clarify their concerns and fears, and provided an opportunity for them to explore their care goals and formulate the plan of actions.

 

From Clinic to Community: Teaching and Doing Ethics in Care Work

Jacqueline CHIN (Presenting Author)
Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore
Singapore

Michael DUNN (Presenting Author)
The Ethox Centre, School of Public Health, University of Oxford
United Kingdom

Nancy BERLINGER (Presenting Author)
The Hastings Center, New York
United States

Michael GUSMANO (Presenting Author)
The Hastings Center, New York
United States

Proposal: Clinical ethics education, well-established in hospitals, may also be organised to serve community physicians. While it is axiomatic that health care work is ethically challenging, health care ethics, as an enterprise, has paid far less attention to the ethics education needs and challenges of community professionals who do “care work.” For nurses, physicians, social workers, case managers, and others who provide care to people with serious chronic conditions in home, long-term care, and ambulatory care settings, clinical ethics consultation services may be non-existent, or accessible only via hospital admission. Given the realities of ageing societies and the migration of many medical interventions and forms of care into non-medical settings, what does clinical ethics owe to those who do care work?  This symposium will draw on international expertise to explore 1) the specific differences and challenges that community professionals face concerning practical ethical decision-making in different settings, and ii) emerging models for education and ethics support that can assist these professionals. Such services need to respond to distinctive features of ethics in community settings: 1) Many community-level ethical challenges in the community setting arise from system level concerns, e.g., resource allocation, program scale-up in response to changing social demographics, rather than “bedside” decision-making;  2) Responsibility for care is distributed among a large number of individuals, including nurses, physicians, care assistants, ‘paraprofessional’ workers (often migrants), volunteers, family members, and friends, and often among different health care and social care organisations; 3) Many community care workers are not educated or supported within health care training paradigms that offer opportunities to learn how to make ethical judgements and work with colleagues to resolve ethical issues arising in their care setting(s) in the context of ageing societies.  Panel participants have been selected for their expertise in both topics. Three 10-minute presentations will be followed by 20 minutes of discussion.  Presentation 1: Ethics in the community: novel challenges; novel decisions This presentation will introduce the special challenges of ethical decision-making and support in the community, drawing on lessons learned from a recently completed ethics practice development project in Singapore, and other research into the challenges of supporting people with long-term and chronic health conditions outside the hospital setting.  Presentation 2: Ethics done communally: sharing decisions with family members and other caregivers This presentation will explore the reality of shared ethical decision-making among different professional actors and ‘informal’ caregivers, including paid workers and family members. The duties and obligations of different caregivers and the implications of these duties for ethical responsibility, education, and support will be highlighted.  Presentation 3: Modelling ethics support for the community The ethical distinctiveness and practical features of community-based care raises questions about whether and how standardised approaches for ethics consultation and committee work can be developed for the community setting. This presentation will explicate a community networking approach to these challenges.

 

A comparison of clinical ethics consultation methods and their grounding values.

Geert CRAENEN (Presenting Author)
UatB Center for Clinical Ethics and Humanities in Health Care
United States

George AGICH (Presenting Author)
Bowling Green State University
United States

Jos KOLE (Presenting Author)
Radboud Universiteit Nijmegen
Netherlands

Nneka SEDERSTROM (Presenting Author)
Childrens Hospitals of Minnesota
United States

The panelists will present their specific clinical ethics consultation methods and explore the grounding values for each method.  Grounding values will be compared for congruence/dissonance, and each panelist will explain how their method will serve these values in future.  Introduction: I will argue that there can be a diversity of methods of doing ethics consultation, but all of them should be anchored in ethics consultation as a reflective practice. A method must guide the actions of consultants; it is thus not just a normative conception or statement of guidelines or procedures. Any adequate method should address the following elements: the interpretation or diagnosis of the ethical questions or problems, the communicative actions of the consultant in the case, the practical and normative foundation for the guidance and recommendations made, and the critical analysis of and reflection on the actions undertaken in the consultation.  1. The Nijmegen Method: This method, developed in Nijmegen (The Netherlands) starts from the idea that we all have moral experiences in daily moral life in the clinic that need to be articulated to understand their meaning and their normative and motivating force. Exploration of this meaning starts with a ‘close reading’ of the scripted text of the case at hand. Rather than ‘solving moral problems’, this method explores the plurality of perspectives, the influence of context and the hidden assumptions that colour our moral experience and understanding. This leads to deeper understanding of what is going on in the case at hand from an ethical perspective and cultivates moral wisdom.   2. The CASES method: The CASES method was developed at the National Center for Ethics in Health Care of the U.S. department of Veterans’ Affairs. It was designed to operate in the specific environment of a government health service, based on solidarity with former military service members. The CASES method serves to respect the moral concerns of health care providers, patients, and their families with a somewhat incongruous blend of respect for persons expressed as autonomy as well as compassion, and solidarity by and with a larger population.  3. Pediatric consults: In this presentation I will discuss using ethics consultation as a means to convince" parents to act in their child's "best interest" during end of life discussions. Ethics is frequently consulted due to the clinical teams need to convey difficult messaging and sometimes, their inability to effectively communicate their recommendations. When dealing with parents of a dying child it is infinitely harder to have conversations about values and best interest standards in the face of such grief so clinicians seek ethics consultation to play the "bad guy." Being able to successfully addressed end of life decision making within the context of parental autonomy is a delicate dance clinical ethics consultants must master.  "

 

To Treat or Not Treat Without Legitimate Consent:  Challenges of Cancer Patients with Mental Illness and Changing Capacities

Philip CROWELL
BC Children's Hospital
Canada

The challenge of caring for patients with severe mental illness entails significant ethical conundrums especially when there is co-morbidity such as cancer.  One daunting hurdle is having patients agree to and comply with treatment.  Add to this inquiry the pediatric element of adolescent patients with developing capacity who are facing cancer and psychiatric morbidity.  Our notions of capacity and competency are testing in many ways because of complex contextual factors.  In some jurisdictions legislation limits any treatment going beyond the psychiatric treatment without the informed consent of the patient.  When children (adolescent) are in these precarious conditions, it is tempting to impose additional treatments given their developmental stage, lack of life experience and the effect of the disease on their cognitive processes.  This presentation will explore notions of capacity in the light of the intersection between mental illness and cancer.  A case is made for adults to make their own medical decisions even when encumbered by mental illness.  But with children our ethical argument for additional protection and treatment has legitimacy because of very specific “best interests” arguments when they are deemed incapable to provide consent to treatments.

 

Do doctors over-investigate patients for their own incentives? A prospective, ‘randomised’ data survey in an Indian metropolis.

Jayanta DAS (Presenting Author)
Dillons Kidney Foundation
India

Krishnendu MUKHERJEE (Presenting Author)
Dillons Kidney Foundation
India

There is a popular perception amongst a section of the public in India that doctors, specially professionals in private sector over - investigate patients for incentives. While these incentives may or may not be purely materialistic in nature, it is widely believed that doctors often do this to generate more “revenue” for the privately funded establishments. Sensational stories in populist media fuels this perception which is in turn potentially detrimental to the trust in doctor-patient relationship and subsequently may affect ‘compliance’ to treatment advice adversely. However, no rigorous scientific research has been performed to test this hypothesis. This study aims to involve a selected group/forum of non-medical (lay) participants and select 3-4 private establishments and the doctors empanelled therein.  As a control arm, 2 charitable / public institutions will also be studied. The members of the non-medical group (Investigaion Forum, IF) will decide on dates of inspection and select the institution. This data collection exercise will have to be done on the same day (within 24 hrs) of the selection. A “double-blind” lucky-draw system will be followed in selecting the institution on each day. The IF will accompany the principal investigators to the institution and also randomly select 5-10 bed numbers. The team will then visit these patients, obtain consent and record 3 parameters; one, principal symptoms; two, working/provisional diagnosis & line of management and three, the list of investigations performed. Data analysis will be done transparently with specialists not involved in the said patient care / institutions and by consulting current medical literature. Necessary clearances from Ethical committees & institutional consents have already been obtained and the composition of the IF have been finalized. If the study shows a definitive statistical trend, a second phase continuation will be undertaken.

 

Ethically important moments in newborn screening for cystic fibrosis

Clare DELANY (Presenting Author)
Royal Children's Hospital Children's Bioethics Centre
Australia

John MASSIE
The Children's Bioethics Centre. The Royal Childrens Hospital, Melbourne
Australia

In research ethics contexts, ethically important moments have been described as ‘the difficult, often subtle, and usually unpredictable situations that arise in the practice of doing research’ (Guillemin and Gillam  (2004, p 262).  Addressing them requires reflexivity about researchers’ role and judgments, and sensitivity to everyday ethical dimensions of research practice.   We suggest a similar need for clinician reflexivity within Newborn Screening for Cystic Fibrosis. This screening is well established and considered ethically appropriate. It reduces morbidity, prevents prolonged diagnostic odysseys for families and offers a chance to engage in genetic counselling. It also complies with original screening criteria proposed by Wilson and Jungner (1968).   However meeting accepted criteria does not remove all potential ethical issues. There are a range of ‘subtle, and sometimes unpredictable situations that arise’ in the ‘doing’ of newborn screening for cystic fibrosis. We present a framework for promoting clinician reflexivity and ethical sensitivity for newborn screening. The framework complements the criteria set by Wilson and Jungner (1968) and highlights a series of ethical alerts to raise awareness of possible ethically important moments as infants move through the cystic fibrosis newborn screening paradigm.

 

Moral heuristics in End of Life Treatment

Alex DUBOV (Presenting Author)
Loma Linda University
United States

Whitny BRAUN (Presenting Author)
Loma Linda University
United States

This presentation will discuss the role of moral heuristics in judgments about life-sustaining treatment in an intensive care unit. We propose that end of life treatment intensity on a given ICU can be influenced by a number of moral “rules of thumb” or heuristics. Moral heuristics are a set of strong, stable, and immediate moral beliefs. These beliefs are not results of a deliberative process. They are rather fast and frugal decision rules or decision norms that produce judgments quickly based on limited information. Most research on heuristics has been conducted by psychologists in the area of risk and probability estimates. This work deals not with moral questions but with some factual issues such as judgments of frequency, probability, and risk. We propose that in a similar fashion, when confronted with a complex moral issue, people resort to moral heuristics and simplify their judgments by using familiar to judge unfamiliar.  Decisions to limit or forgo life-sustaining therapy are one of the areas in clinical practice where moral heuristics can be particularly relevant. One in five US patients die during or shortly after an ICU stay. A number of studies demonstrate striking variability in these decisions (sixfold) even after adjusting for patient and ICU factors. Ideally, these decisions should depend on goals and preferences of families, survival estimates and quality of life considerations, and illness severity. However, the recent research suggests this variability is not driven by the factors above, but, rather, by decision-making norms deriving from hospital or ICU cultures. Assuming that moral heuristics are results of these cultural decision-making norms, we discuss a number of relevant moral heuristics, such as commission/omission distinction, means to an end/end in itself distinction, rule of rescue, and decision ownership.

 

A cross cultural examination of pain: conceptual, practical and clinical ethical challenges

Marleen EIJKHOLT (Presenting Author)
Davidson College, Charlotte Medical Center
United States

Nneka O. SEDERSTROM (Presenting Author)
Children's of Minnesota
United States

Daniel FU-CHANG TSAI (Presenting Author)
National Taiwan University College of Medicine, Department of Medical Research,
Taiwan

Yonghui MA (Presenting Author)
Xiamen University, Medical School
China

Pain is a relevant clinical problem, but also a social construct impacted by culture, environment and gender. As a result, it would not be surprising if pain would be perceived, framed and treated differently across cultures. However, minimal literature exists on cross-cultural examinations of pain, and this panel seeks to fill this gap. The phenomenon of pain is complex and entails conceptual, practical and clinical ethical challenges. Conceptual challenges arise, for example, from the distinction between pain and suffering. Practical challenges arise from tensions between objective and subjective components of pain, and clinical ethical challenges arise in cases where surrogates desire adjustment of pain medications for the unconscious patient. For example, if a surrogate asks to remove pain control so the patient regains some consciousness, this could conflict with providers’ impressions that the pain should be treated and that consciousness is less important.    Some authors have identified the social construct of pain in differing ideas about when it is ‘appropriate’ to express pain, which pain is ‘appropriate’ to express, and how it should be treated. Since the 90s, pain has been framed as the 5th vital sign in the US, as an essential component of the patient’s status, and something that should be reduced at all costs. In turn, this construction and the sensitivity for the pain narrative, has been labeled as one of the major causes of the 2016 US ‘Opioid-Epidemic’. The question is if such an epidemic could arise elsewhere in the world. Some Western historical discourse around pain is composed through references to religious and spiritual components of pain; enduring pain could be seen as a means of communicating with God or as having a redemptive component. Certain Christian perspectives, in particular, have long emphasized dualistic thinking to address the spiritual versus physical components of pain. Such rhetoric is obviously contextual.  This panel seeks to examine these various challenges in the framing of pain across cultures. By exploring cases and concepts, it will examine the meaning of pain, the various challenges of the pain discourse and varying approaches towards pain through a cross-cultural lens.  In addition, it focuses on questions such as: what is the relevance of pain in the clinical setting, what (in)abilities do patients and surrogates have to address pain in the clinical setting, how is pain treated, and what concepts frame the importance of pain?   Paper #1 seeks to describe some of the ELSI of pain treatment in the US setting, adopting a historical and comparative lens. Paper #2 discusses pain and freedom from pain as a right that must be respected for all, from an American point of view. Paper #3 examines the practice of pain control in EOL care, and the meaning of suffering in a Taiwanese context, while reflecting upon the cultural values that influence such clinical practice. Paper #4 focuses on tensions between patients’ health and welfare, versus beliefs that impact developments of effective pain management strategies in the Chinese context, as impacted by traditional philosophical and ritual backgrounds.

 

Clinical neuroethics: Cracking brains and health care systems

Marleen EIJKHOLT
Davidson College, Charlotte Medical Center
United States

Based on a real life scenario, involving a military veteran with PTSD and TBI, I explore some clinical ethical issues evolving from emerging neuro-technologies. In the scenario, a veteran hospital (VA) requests a civilian hospital to perform an fMRI, for an indication that has not been accepted in the civilian system of health care. This raises ethical concerns about differences in clinical translation of neurotechnologies and the lack of cooperation between services that deal with brain disorders. The fragmentation of the brain sciences may adversely impact the patient’s interests in receiving speedy and adequate care. Moreover, the scenario reveals systems-problems that result in obstacles and concerns about safe discharge due to labeling illness, potential unnecessary use of expensive resources and delays due to.  In this paper, I will examine 3 issues. First I will address question how to accommodate for the patient’s best interests in this case, given divisions between neurology and psychiatry and the silo-ing of different departments. I will consider concerns about pushing off difficult, time consuming patients on each other. Second, I will scrutinize clinical criteria for the appropriate use of fMRI by focusing on the relationship between matters of scientific efficacy and value laden considerations about the patient's best interests. I will include ethical concerns related to the translation of technology in differing health care systems, such as public health care systems versus other systems like the VA. Finally I will ask about the range of interests that should be taken into account in the use of fMRI in a hospital. Should they go beyond the strictly clinical? Should we allow the translation of a technology from bench to bedside sooner to facilitate patient transfers like in the present case, irrespective of the continuing methodological and scientific debates?

 

Bridging the gap: e-ethics joins other specialties in medicine to provide distance consultation

Margot EVES (Presenting Author)
Cleveland Clinic
United States

Joshua CRITES
Cleveland Clinic
United States

Cristie HORSBURGH
Cleveland Clinic
United States

As various forms of technology become increasingly integrated into the provision of healthcare, it seems only appropriate that clinical ethicists should consider how such technology might be leveraged to conduct clinical ethics consultation and education. Such technology is currently used by medical specialties to reach patients located in geographically more remote locations (e.g., a wellness “check-in” for an elderly patient who lives 90 minutes from her doctor’s office and cannot drive herself or find transportation,) provide greater “on demand” care (e.g., “urgent care” visit for persistent cold/flu symptoms,) assist with care at healthcare facilities where personnel resources do not include a particular needed specialty (e.g., psychiatry consult for a nursing facility without a psychiatrist on staff.) Not only does this approach meet the “convenience” demands of patients’ busy modern lives, it increases cost efficiency of high-impact, low-burden healthcare related activities. Within our own healthcare system, we developed an electronic platform to provide ethics consultation support to hospitals within the healthcare system and to support developing ethics programs or programs with limited resources or who do not have formally-trained ethicists at facilities outside the system. Like distance/tele-medicine has done for intensive care units, e-ethics provides an innovative way for larger healthcare systems to meet the clinical ethics needs of multiple facilities without hiring multiple ethicists. In this presentation, we will discuss the development of our e-Ethics program and platform, including challenges/lessons learned, and future directions.

 

Providing Care for Patients Without Documentation: An end-stage renal disease case study

Jeffrey S. FARRONI (Presenting Author)
University of Texas Medical Branch at Galveston
United States

Jennifer ZIRKLE
University of Texas Medical Branch at Galveston
United States

Selwyn O. ROGERS
University of Texas Medical Branch at Galveston
United States

Jason R. ROSS
University of Texas Medical Branch at Galveston
United States

An estimated 11.7 million undocumented immigrants live in the US. Current federal and state policies significantly limit an undocumented immigrant’s access to health care. Policy efforts in the US to address chronic health needs, like end stage renal disease (ESRD) treatment, are denied for this segment of the population. Even recent legislation like the Affordable Care Act, which aimed to increase health care access, has further marginalized undocumented immigrants. The culmination of these legislative efforts leaves health care institutions and medical teams to grapple with treating undocumented patients which may challenge our professional and moral duties to provide the best standard of care.  We present a case where an undocumented patient was in danger of losing vascular access for dialysis in his management of declared ESRD. The current approach to care was relegated to the patient waiting until critical need arose, due to the limited fashion in which care is mandated and reimbursed by applicable state and federal policies. The patient would arrive in emergent need of dialysis, have a temporary catheter placed, dialyzed, the catheter removed and discharged. This cycle would then repeat when the urgent need arose again. Concern grew within the team that vascular access may become compromised to the point that dialysis would no longer be possible.   We adopted a rights-based, capabilities approach that considered the patient’s vulnerability in society. Our ethical framework views undocumented immigrants as integrated participants in our society and rejects the notion that they represent “the Other” in our community. We were able to convene a multidisciplinary working group whose aim was to develop a creative strategy for optimizing similarly situated ESRD patient. This approach recognized the pragmatic reality of limited resources and constraints imposed by the State and, in fact, reveals the economic efficiency of providing non-emergent ESRD care.

 

An Actual Advance in Advance Directives: Moving from Patient Choices to Patient Voices in Advance Care Planning

Stuart FINDER (Presenting Author)
Cedars-Sinai Medical Center
United States

Virginia BARTLETT (Presenting Author)
Cedars-Sinai Medical Center
United States

Since living wills emerged 40+ years ago, challenges with advance directives (ADs) have been documented across healthcare settings and among different patient populations and cultures, especially the perpetual challenge of guiding clinical care utilizing pre-selected “choices” about specific interventions. Indeed, most ADs focus upon choices regarding broad themes (“prolong life / do not prolong life,” e.g., which, lacking context, prove to be of limited meaningfulness) and whether or not to utilize particular interventions (CPR, mechanical ventilation, e.g., about which most laypersons know little). Whether by foundational frame or decades-long misunderstanding in medicine and Bioethics, or different societal customs, these ADs locate decision-making for initiating, continuing, or withdrawing medical interventions as a patient responsibility ? creating a burden for which most patients are unprepared and limiting healthcare providers’ responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients (articulating their goals, values, and preferences) and physicians (using medical expertise to reach patient goals) for enabling appropriate plans of care. This includes re-structuring our AD form to more accurately represent a patient’s values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters and what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue ?" or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity. Using an engaging, multi-media power point, this presentation will outline how the simple shift in framework becomes a profound shift regarding patient and provider responsibilities, and ultimately, an advance in the realm of"

 

Alfred Schutz, The Stranger, and the Unending Challenge of Engaging Ethics in Clinical Contexts

Stuart FINDER (Presenting Author)
Cedars-Sinai Medical Center
United States

Virginia BARTLETT (Presenting Author)
Cedars-Sinai Medical Center
United States

Mark BLITON (Presenting Author)
Kaiser Permanente Los Angeles Medical Center
United States

Stella REITER-THEIL (Presenting Author)
Univeristy of Basel
Switzerland

The concept of clinical ethics consultants (CECs) functioning as strangers was an influential idea early on in the clinical ethics literature in the USA (see, for instance, Agich, Barnard, Churchill, Hoffmaster).  As CECs have become more common in the US and Europe, however, that discussion has receded.  Nonetheless, attention to this motif deserves to be renewed and insights retrieved, especially as Singapore, along with other nations, nurtures its own response to clinical ethical issues.    Within that influential idea is a rich set of learnings likely to help people interested in cultivating the field of clinical ethics in cultural settings that have similarities to, but also significant differences from, the US and European contexts.  More specifically, as explored in the generative work of sociologist-philosopher Alfred Schutz, the role of the stranger illustrates the ways by which, and through which, core commitments, values, and beliefs embedded in the practices and languages of different groups may become highlighted.  For example, Schutz says the stranger is someone who “has to place in[to] question nearly everything that seems to be unquestionable to the members of the approached group,” that is, a group to whom the stranger does not belong, at the very moments when an individual, as outsider, is becoming a part of that group ? that is, is becoming an insider.  Acknowledging that CECs are often cast into the role of stranger ?" they are a new and different kind of “care provider” ?" they have the opportunity to learn what counts as “taken for granted” and as typical “thinking as usual,” and what serves as the “believed in” reality, for the various individuals composing the different groups in a given clinical situation.  Accordingly, an ongoing challenge for Clinical Ethics (and CECs) is to reflect on those important beliefs that underwrite various practices while also engaging in discovery and learning about those sets of beliefs that are operating within the approached group.  This panel will explore these themes in the following way:    The first speaker introduces the history and themes of “the stranger” in clinical ethics literature to briefly reflect on how and the extent to which this notion continues to be relevant.  The next speaker summarizes Schutz’s concept of stranger and then identifies attributes that contribute to the activities of recognizing and exploring a diversity of standpoints and meanings in particular contexts. Particular emphasis will be directed toward the movement from outsider to insider as useful for investigating the activities of clinical ethics consultation, whether these activities occur at the organizational level, in relation to clinical encounters in different units in a hospital, or among a variety of professional groups and practices.  In that light, the third speaker turns explicitly toward the context of clinical and professional experiences of CECs both in examples as well as to open up the conversation by asking questions about the role of CEC and about the influence the presented concepts might carry forward in the discourses organized around the role and development of clinical ethics consultation. "

 

How do cancer patients face the approach of death? What do they ask then to medicine?

Véronique FOURNIER (Presenting Author)
Centre d'éthique clinique, Assistance Publique-Hôpitaux de Paris
France

Philippe BATAILLE
Ecole des hautes études en sciences sociales
France

Sandrine BRETONNIERE
Ecole des hautes études en sciences sociales
France

Fançois-Xavier GOUDOT
Centre d'éthique clinique, Assistance Publique-Hôpitaux de Paris
France

When cancer progresses and patients reach the point where no more curative treatments are available, the doctor-patient relationship often becomes strained. Doctors refer their patients to the palliative care team, but they most often resist. This reluctance persists even if patients are referred to palliative care earlier, with the hope that in doing so, they might better accept it later, when they will definitely need terminal care. Thus, doctors still wonder, in France as in other countries, how best to help their cancer patients prepare for their coming death. As a CESS, we implemented a research study to help answer this crucial question. We conducted individual in-depth qualitative interviews with 47 patients who were at an advanced stage of cancer (M: 21, F: 27, mean age: 65 yrs; mean length of the disease: 5yrs, interviewed between 1 and 3 months before death). They all had been told that no curative treatment was anymore available for them and that they could now be best care for by the palliative care team. The study showed that most of them were not interested to talk about death, even if they were perfectly aware that they might die soon. What was crucial for them was to keep up a feeling of hope and to remain connected to the dynamics of life up to the very end. Without hope, the experience is impossible to sustain, they said. It is for this reason that the most part of them asked for more chemotherapy, even if doctors have clearly refused to provide it, in light of a negative beneficience/maleficience balance. For patients, to continue chemotherapy maintains hope and allow to live relatively peacefully up to the very end. We will detail the results of the study and discuss them from a clinical ethics point of view.

 

Ethical Issues in Clinical Practice: A survey of Clinicians’ Experiences and Views about Clinical Ethics Support

Giuliana FUSCALDO (Presenting Author)
University Hospital Geelong, Barwon Health
Australia

Melissa CADWELL
University Hospital Geelong, Barwon Health
Australia

Kristin WALLIS
University Hospital Geelong, Barwon Health
Australia

Lisa FRY
University Hospital Geelong, Barwon Health
Australia

There is ongoing discussion in Australia about the need for and the type of Clinical Ethics Support (CES)   suitable for hospital settings. We investigated the type of ethical issues encountered by clinicians in a large regional Victorian teaching hospital, how clinicians address these issues and what type of CES they would find helpful.   Hospital staff were invited to complete a validated survey, administered online.  Approximately 8% (368) of all clinical staff completed most, or all, of the 20 Likert scale, multiple choice and free text questions.   57% (208/363) of respondents indicated that they often or occasionally have ethical concerns in clinical situations.   69% (245/357) of respondents agreed or strongly agreed that ethical issues could be better handled and 82% (294/358) indicated that there are some ethically complex situations where more support might be helpful. The most frequent options selected for type of support, were: having regular educational seminars on ethics and law (187/313, 60%), more 'in-service' training or education   (171/313, 55%), having an individual ethics and/or legal expert available for advice (162/313, 52%), and having an advisory group (155/313, 50%).  Consistent with international developments, our research supports the development of clinical ethics capacity and the implementation of clinical support services.

 

The Ethics of Living Skin Donation

Monica GERREK (Presenting Author)
Case Western Reserve University
United States

Oliver SCHIROKAUER
Case Western Reserve University
United States

Anjay KHANDELWAL
MetroHealth Medical System
United States

The use of living skin donors for the treatment of various conditions including burn wounds, scalp avulsion, and breast reconstruction, is an uncommon occurrence in the United States, but one that raises significant ethical concerns. Although living solid organ transplant centers in the U.S. are required to implement informed consent procedures and to provide an independent advocate for the living donor to ensure the living donor’s interests and rights are protected, there are no such similar rules in place for living skin donors. Yet, living skin donors face many of the same challenges that living solid organ donors face, including health care concerns, financial considerations, the need to provide informed consent, psychosocial issues, and possible inducement, coercion or other pressure. In fact, some of these issues may be of greater concern for living skin donors than for living solid organ donors. For example, because living donor skin grafts are not considered transplants, the surgery on the living donor is not covered by insurance. In the case of donation for breast reconstruction, the decision to donate might be further complicated by the fact that, unlike in any other living donation, the donor receives a cosmetic benefit by undergoing the procedure (abdominoplasty). Finally, perhaps the most important concern in living skin donation stems from the fact that the majority of donors are monozygotic twins or triplets. The pressure on these individuals as savior siblings may be greater than on any other kind of living donor. Our conclusion is that in settings such as the United States, in which the protections given living skin donors fall short of those afforded living solid organ donors, the rules and policies governing donation should be expanded to ensure that the interests of living skin donors are addressed.

 

Case discussion- an adolescent requesting removal of IUD without parental involvement

Lynn GILLAM
University of Melbourne and Royal Children's Hospital
Australia

This is an interactive discussion of a case (suitably de-identified) which was referred to our clinical ethics service several years ago. The circumstances were medically straightforward, but socially complicated. It raised some ethical issues and questions which we have continued to ponder, including questions about the nature and ethical significance of competence in adolescence, whether refusal of treatment is ethically different in this regard from request for treatment, and whether the interests of people other than the patient can ever be given ethical weight in a treatment decision for an adolescent.  In brief, the case involved a 15 year old girl who presented to the emergency department alone,  with abdominal pain, and requested  non-standard treatment of chronic constipation. She refused standard non-invasive methods of  management, and wanted a manual disempaction under general anaesthetic, a procedure which she had previously had done. She then asked for her IUD (intra-uterine device) to be removed under anaesthetic at the same time . She was adamant that her parents not be contacted. Her medical records showed that she had the IUD inserted with parental consent approximately 6 months earlier, and that she given birth the previous year, at age 14.

 

Developing Medical Student Entrustment in Advance Care Planning: Challenges and Lessons Learned

Marin GILLIS (Presenting Author)
Herbert Wertheim College of Medicine at FIU
United States

Sanaz KASHAN
Herbert Wertheim College of Medicine at FIU
United States

Chris DEGNON
University of Texas Rio Grande Valley
United States

Marcos MILANEZ
Herbert Wertheim College of Medicine at FIU
United States

While physicians believe that end-of-life care and advance care planning (ACP) conversations are important, they frequently report that they find this uncomfortable and do not know what to say. To support ethical practice in healthcare through respecting the primacy of patient welfare and patient autonomy, training of clinicians in advance care planning is warranted. We developed a longitudinal educational intervention to develop a learner competency in ACP to meet this need. Such will ultimately improve patient care in a significant ways and will foster provider resilience in the face of what has been typically regarded as distressing. We will present our strategies, challenges, and lessons learned.  Our intervention is focused on a concrete target: students will become competent to discuss advance directives with patients and families and to accurately document the patient’s goals of care, in particular. A core team of educators determined the knowledge and skills needed to arrive at this competency. We located course and clerkship opportunities across the entirely of the undergraduate medical degree as to not add any required learner hours and created a yearly schedule of faculty and staff development sessions on ACP. We also consulted educators whose learning objectives dovetailed with ours.   Strategic and process management skills are necessary to develop a longitudinal competency-based curriculum and must included in the calculation of workload: 1) managed communication is key amongst faculty and staff across a variety of courses; 2) Educational IT is necessary as a competency dashboard is helpful; 3) Faculty and Staff development must be managed; 4) fostering a commitment to use shared language and definitions (e.g. shared decision making, serious illness) across the medical school is also essential.

 

Development and deployment of a National on line Supplement in Research Ethics: A Brazilian experience

Pollyana GONTIJO (Presenting Author)
Federal University of Minas Gerais
Brazil

Luciana DADALTO
Newton Paiva University
Brazil

Dirce GUILHEM
University of Brasilia
Brazil

Dominique SPRUMONT
University of Neuchâtel
Switzerland

Dirceu GRECO
Federal University of Minas Gerais
Brazil

Brazil is a continental country with over 200 million inhabitants and with a high turnover of Research Ethics Committees (REC) members, which often receive inadequate support from institutions for their maintenance. There are currently 765 RECs in Brazil and it is estimated that they comprise over 5,000 members. Despite the number of people involved with the ethical evaluation of research, there is a shortage of educational materials that target these members. Therefore, a Brazilian National Supplement was developed on the online platform TRREE (Training and Resources in Research Ethics Evaluation), in order to bring together information on research with human beings in a single document, adapted to Brazilian laws and regulations. This paper aims to describe the researchers’ experiences in the design of the Brazilian National Supplement.  Results: The Brazilian National Supplement consists of educational and advisory material in ethics in research with the objective of helping qualify REC members to carry out ethical evaluations of research projects. It consists of 100 topics in tem major areas, using the TRREE model. The working team consisted of tem people from different professions and areas of activity and two experts who were responsible for reviewing all the material. The development of the material lasted 18 months and the legislation on ethics in research in Brazil was included. The Brazilian national supplement will be available, at no charge, online through the TRREE Platform [http://elearning.trree.org].  Conclusion: Development and deploying a national supplement in research ethics is a complex task. Specific steps should be followed for the educational material to be valid, and people must be available to work in a multi-professional team. Financial resources are essential for the provision of a national affordable online supplement. Despite the challenges, building a source of local educational material on research ethics is a feasible and necessary activity.

 

What Kind of Neutrality? Keeping the Ethics in Ethics Consultation

Laura GUIDRY-GRIMES (Presenting Author)
MedStar Washington Hospital Center
United States

Jamie WATSON
Broward College
United States

Many ethicists and health care providers are skeptical of the idea that ethicists can speak authoritatively about ethical matters in practical contexts. Part of the worry is that when ethicists attempt to speak authoritatively, they end up ignoring the complexities of practical settings. Another worry is that ethical decisions are not the sort of decisions on which one person can authoritatively advise another. This skepticism has led to describing ethics consultation in the weakest possible terms, consulting that aims at conflict resolution and cultural and religious understanding within the constraints of organizational values. Although neutrality is often considered a virtue for how ethics consultation should be done, this approach falls into “hyper-neutrality.” We delineate types and degrees of neutrality that often go overlooked. The implications of the hyper-neutrality approach are evident in the consultation process, the content of the recommendations, and the language used in ethics chart notes. We demonstrate how this approach can subtly affect ethics consultation by working through established consultation methods and cases. We argue that a hyper-neutral approach undermines the central motive for and potential benefits of enlisting ethics consultants, and that we should either refrain from identifying such practices with ethics or develop a robustly ethical conception of ethics consultation. Further, we argue that, with some careful distinctions and a firm sense of the limitations of ethical expertise, skeptical worries can be allayed and a robust sense of ethics consultation with proper neutrality can be supported.

 

Impact of moral case deliberation in contemporary healthcare institutions: an integrative review

Maaike HAAN (Presenting Author)
IQ healthcare, Radboud University Medical Center, Nijmegen
Netherlands

Jelle VAN GURP
Radboud University Medical Center
Netherlands

Simone NABER
Radboud University Medical Center
Netherlands

Evert VAN LEEUWEN
Radboud University Medical Center
Netherlands

Stef GROENEWOUD
Radboud University Medical Center
Netherlands

Over the past decades multidisciplinary deliberations have been used to address moral questions and dilemmas that arise in patient care. Such deliberations have developed into a specific form of clinical ethics support, with various methods available. There is, however, little generalized empirical or conceptual evidence for the impact of those deliberations ? partly because of the variety of ways in which the phenomenon is described in practice and in research (moral case deliberation, ethics meetings, ethics rounds, ethics consultations, etc.).   We conducted an integrative literature review on this rich phenomenon of ‘moral case deliberation’. Because of the variety of used terminologies, we executed an extensive search strategy to cover the field. We (qualitatively) analyzed both empirical (e.g. observational, case or evaluation) studies, which provide information about the current practice, as well as conceptual (e.g. philosophical) papers, which provide statements about possible impact and results. In our presentation we will provide an overview of:  - types of moral case deliberation and terminologies used to describe these;  - expectations and conceptual assumptions for moral case deliberation by healthcare professionals, facilitators or researchers;  - empirical evidence for the impact of moral case deliberation, for example on quality of patient care, ethical competence, professional well-being or inter-professional communication within a team;  - and the relation between these expectations and assumptions, and the empirical evidence.   Often, in contemporary fragmented and pluralistic healthcare institutions, there is a lack of time and opportunity to thoroughly reflect on dilemmas together. With our review we hope to contribute to a shared understanding of moral case deliberation. This review provides support for implementation of moral case deliberation and may help convince stakeholders of its value. At ICCEC we would like to present our conclusions and discuss with the audience the anchorage and benefit of moral case deliberation in healthcare institutions."

 

Difficulty to approach individuality in clinical ethics

Kenji HATTORI
Gunma University School of Medicine
Japan

The orientation to individuality or concrete ethical issues of each individual case with specific circumstances, is vital for clinical ethics. And yet, due to apparent obviousness, little attention has been paid to how it is possible for ethicists to approach individuality of the case at hand. This question is the very topic in this paper. The first beacon of the modern clinical ethics, against principles-based biomedical ethics, was the revived casuistry introduced by Jonsen and Toulmin. It is the case, however, that casuistry is based on a typological way of thinking, in that casuistry puts each case in question at a certain point between the two poles, paradigmatic cases in the typological matrix as the ground. Without such a patterned tableau as a whole, the given case would be floating, and the method of casuistry itself would be impossible. Thus we should admit that, in casuistry, the paradigmatic types have precedence over each individual cases. Then how is it possible for ethicists to access and put priority on each individual case?  We can utilize a psychological and hermeneutical work (1895-6) by Dilthey, in which he explored the way to approach particular individuality, but in vain. In this paper, tracking down Dilthey’s thought on individuation and homogeneity as a clue and grope for another alternative, we argue about the legitimacy of the banner of clinical ethics, which claims approaching specific individuality of a given case as it’s the essential feature.

 

Family members’ experiences with and views on coercion in mental health care and the possible role of clinical ethics support

Marit Helene HEM (Presenting Author)
University of Oslo, Faculty of Medicine, Institute of Health and Society, Centre for Medical Ethics
Norway

Reidun NORVOLL
University of Oslo and Work Research Institute/Oslo and Akershus University College of Applied Sciences
Norway

Hilde LINDEMANN
Michigan State University
United States

The use of coercion in mental health care is not only influencing the individual patient, but the whole family. However, there are few studies exploring family members’ experiences with and views on coercion, and the (moral) dilemmas they face.  The aim of this narrative study is to explore experiences with and views on coercion and involvement in care from the perspective of family members. Methods: The empirical material includes three extensive semi-structured focus-group interviews and one individual interview with 20 adult relatives of adults with various mental health problems and experiences with coercion.  Participants were recruited through next-of-kin organisations from the southern and eastern parts of Norway. Data were collected in 2012-2013 and analysed using a thematic and dialogical narrative analysis drawing on a family ethics perspective. Findings: Family members held various views on coercion, influenced by their practical experiences with coercion over time.  We found four major themes of dilemmas in their stories: the ambiguity of coercion; struggling to keep connected and establishing collaboration; worries and distress regarding compulsory care; dilemmas regarding initiating and exercising power and coercion.   Discussion: Family members’ views and dilemmas should be broadly explored utilising family and triadic perspectives. Coercion can reduce burden, but also adds burden by creating strains on family relations, dilemmas, (moral) distress and retrospective regrets. These dilemmas are enhanced by lack of information, involvement and/or low quality care. Conclusion: There is a need to develop sufficient support and voluntary alternatives in the home, to prevent coercion. Further it is important to improve compulsory care and support family relations when coercion is undertaken. Health personnel should provide more guidance and balanced information regarding coercion in order to increase family members’ possibilities for informed decision-making. Clinical ethics support could play an important role regarding the necessity for establishing dialogue and cooperation among stakeholders.

 

Overcoming professional and system barriers to achieving patient-centred informed consent

Sucharita HOTA (Presenting Author)
National University Hospital
Singapore

Peter George MANNING (Presenting Author)
National University Hospital
Singapore

Teck Chuan VOO (Presenting Author)
Yong Loo Lin School of Medicine
Singapore

Jacqueline CHIN (Presenting Author)
Yong Loo Lin School of Medicine
Singapore

The case of Montgomery v Lanarkshire Health Board (2015) in the UK has led to a growing interest in how healthcare institutions can promote better patient-centred consent processes(Ref i).    This symposium will focus on the development and implementation of informed patient decision-making policy at an academic teaching hospital in Singapore, the National University Hospital (NUH). 4 speakers, comprising members of the NUH Clinical Risk Management team, Hospital Ethics Committee and the Bioethics Centre will address the following topics, with 15 minutes for taking audience questions: 1. Determining the value-basis and systemic implications of an informed consent policy This presentation will briefly explain the Reasonable Patient Standard from the case of Montgomery v Lanarkshire Health Board, and its implications for practice at the professional and system level. It reviews the requirements of high-value, shared decision-making between professionals and patients, its benefits and costs, and efforts to incentivize its implementation in practice.  2. Reasons for, and barriers to, achieving patient-centred informed consent at an Asian University Hospital  This presentation will report on the development of a quality improvement initiative for achieving patient-centred informed consent at the NUH, a tertiary care hospital, and a survey of healthcare professionals and administrators in NUH departments on their perceptions of the Reasonable Patient Standard for informed consent, shared decision making with patients, and an analysis of participant feedback on reasons for and against, and barriers to, achieving this in practice.    3. Developing patient decision-making tools for improving informed consent to treatment at an Asian University hospital  Patient decision-making tools or aids aim at improving patient knowledge, understanding of risk and patient participation in care decisions. Certification of patient decision-making tools depends on best available scientific evidence on the risks attached to medical treatments and procedures, and capturing patients’ values and preferences (Ref ii).  This presentation focuses on a small-scale controlled trial of two decision-making tools for informed consent for elective surgery and/or an elective medical procedure at the National University Hospital in Singapore. Expert reviews of the two patient information leaflets (PILS) will be conducted for scientific accuracy, and face validity will be tested.  A mixed methods study combining a tool for measuring patient participation in decision-making and a qualitative interview study will be conducted to assess the impact of PILS on patients’ knowledge, accuracy of risk perception and level of active participation in treatment decision-making. The presentation will also report on the work of the NUH with potential certifying authorities to incentivize systems improvement for achieving informed patient decisions.  References: i Spatz ES, Krumholz HM, Moulton BW. The New Era of Informed Consent: Getting to a Reasonable-Patient Standard Through Shared Decision Making. JAMA. 2016 May 17;315(19):2063-4. ii. http://www.hca.wa.gov/about-hca/healthier-washington/patient-decision-ai...

 

Sowing the ‘SEED’ for a Supportive Decision Making Model

Kim JAMESON (Presenting Author)
University of British Columbia
Canada

Soodabeh JOOLAEE
Iran University of Medical Sciences
Iran

Daniel BUCHMAN
University Health Network
Canada

Anita HO
National University of Singapore
Singapore

Background: Despite the centrality of individual autonomy in western bioethics, many clinical ethics dilemmas involving patients of diverse backgrounds highlight the need for attending to relational factors in considering treatment decisions. However, few relational tools exist to help health care providers (HCPs) support patients and families though complex decisions in ways that truly respect people’s agency.    Methods: This presentation focuses on findings from a multi-phased Canadian qualitative study examining intersecting factors affecting patients’ and families’ ability to make complex healthcare decisions between 2012-2016. Based on interviews with 41 HCPs, 86 patients, and 41 family supportive decision makers (SDMs) of diverse backgrounds in Vancouver, we developed a relational supportive decision-making model. Using treatment decision case examples, we then conducted three focus groups with 18 non-physician HCPs and an additional 8 physician-interviews in Vancouver and Toronto.   Results: Based on HCPs’ feedback, we refined a 4-step iterative ‘SEED’ model of relational decision making: 1) Seek collateral information, 2) Engage in conversation, 3) Explore options and preferences, and 4) Decide with patient/SDMs, document, and debrief. The model provides HCPs practical strategies, trigger questions, communication recommendations, and available resources for each step to engage patients and families. It embeds supportive and collaborative approaches at the interpersonal and system levels. By helping HCPs gather relational and contextual information regarding the patient, the SEED model is designed to help anticipate the needs and resources that are necessary to support healthcare decisions that are made in relational and social contexts.  Conclusion: An iterative relational model may facilitate collaborative decision-making that can empower patients and families in therapeutic encounters.  Prospective collaborative studies including medical teams, patients/SDMs, and clinical ethics committees/consultants may also help to explore the long-term effectiveness of preventing decisional dilemmas at the bedside.

 

Clinical Ethics Services in Tertiary Paediatric Hospitals in Australia and New Zealand: A Survey of Presence and Function

Melanie JANSEN (Presenting Author)
Centre for Children's Health Ethics and Law, Children's Health Queensland
Australia

Emma COTTLE
Centre for Children's Health Ethics and Law, Children's Health Queensland & Griffith University
Australia

Helen IRVING
Centre for Children's Health Ethics and Law, Children's Health Queensland & University of Queensland
Australia

Ben MATHEWS
Australian Centre for Health Law Research, Queensland University of Technology & Centre for Children's Health Ethics and Law, Children's Health Queensland
Australia

BACKGROUND: Ethical decision making in paediatrics is complex. A formal clinical ethics service (CES) can support clinicians and families in this often challenging arena. CESs are a relatively new concept in Australian and New Zealand healthcare but are considered important by accreditation bodies for quality healthcare delivery, and are mandated in some countries internationally. There is, however, a paucity of evidence on which to base the development and operation of CESs. A description of existing services is a key step in developing consistent standards.  OBJECTIVE: To explore the presence, purpose, function and governance of clinical ethics services in tertiary paediatric hospitals in Australia and New Zealand.   METHODS: One key person from each of eight tertiary paediatric facilities completed a 28 item, descriptive, quantitative survey about their local organisation’s approach to clinical ethics service provision.  RESULTS: 88% of facilities have access to a CES. All services provide clinical case consultation, 86% provide education, policy and guideline development, and 57% undertake original ethics research. Case consultation practices are heterogeneous, with just over half of the services having a written policy for how consultations are conducted. Only three services always document the consultation in the patient’s medical record. None of the services reported being funded by their local health service. Most rely on funding from charitable organisations and in-kind support from clinical staff and partner universities.  CONCLUSIONS: There is wide heterogeneity in how CESs operate in Australian and New Zealand paediatric hospitals. There is a need to develop consistency of practice such as clear guidelines for consultation and for documentation of case discussions. Funding models for CESs need to be developed. Further research to describe and analyse case consultation processes, define core competencies for CES members, and understand activities in non-tertiary, general hospital and community health settings where children are managed, is required.

 

Slow ethics ...2 years on!

Jenny JONES (Presenting Author)
Metro South Health, Brisbane, Australia
Australia

Eleanor MILLIGAN (Presenting Author)
Griffith University, Gold Coast, Australia
Australia

At ICCEC 2015 we presented a case study of Jane* a young woman in her early twenties living with borderline personality disorder and a history of persistent and extreme self-harm. Over the past 10 years Jane has damaged her body to the point where multiple surgeons agree that further surgery would not be in Jane’s best interests. In 2015 we sought to further understanding of the appropriateness of palliation for patients living with chronic life limiting mental illnesses as well as clarifying the role of the Clinical Ethicist within the context of this particular situation. In this presentation we revisit Jane’s story 2 years on. Jane’s case was referred to the appropriate statutory authority which determined that Jane had the capacity to make her own decisions. Should Jane lose capacity, her mother was acknowledged as substitute decision maker. Following this assessment, Jane was discharged and cared for by her mother with some community support. In recent months, Jane re-presented with the request for comfort care only. After extensive consultation, her care was transferred to the palliative care team and Jane was admitted to the palliative care unit. Staff have found it difficult to care for Jane. Her challenging behaviours, perceived ‘dividing’ of staff caused a considerable disharmony and distress amongst the practitioners, particularly nursing staff. A number of Compassion Cafés were facilitated to assist staff build their capacity to care not only for patients such as Jane, but also to strengthen their self-awareness, self-care and ability to respond appropriately to the multiple other complex and challenging situations encountered in the contemporary healthcare setting. In this presentation we will discuss the role the Clinical Ethicist has played in providing both Consultation services and the facilitation Compassion Cafés -  a concept similar to that of Sautet's Café philosophique.

 

Awareness, Attitude, Understanding and Perceptions towards Informed Consent among patients attending Tertiary care hospital in Kerala, India.

Sabin KATPATTIL
Yenepoya university
India

Introduction  Patient’s autonomy is an imperative issue in the health service area. It is a known fact that patient’s awareness of legal and ethical issues related to the consent process is often limited. The present study was therefore conducted to ascertain patient’s awareness, attitude and perceptions towards informed consent.  Methods  A structured interview schedule was developed and handed out to 343 patients attending the General surgery department in a tertiary care hospital, Calicut during January 2014 to June 2015.  Results:  88% of participants believed that they had no right to change their mind after signing the consent. 61.6% trusted their doctor to do the right thing and did not mind what happened to them provided they were made better. Level of understanding was satisfactory in only 32% of patients.  Conclusions  A great deal of misconception regarding the legal status of consent was seen. The study concludes that there exists a vast discrepancy between the informed consent that perceived by patients. Current consent procedures seem inadequate as a means for the expression of autonomous choice and their ethical standing can be called into question.

 

Ethics of health related quality of life influencing end-of-life decision making and futility of care in burn patients

Anjay KHANDELWAL 
Institue of Burn Ethics - MetroHealth Medical Center
United States

Monica GERREK (Presenting Author)
Institute of Burn Ethics - MetroHealth Medical Center
United States

Oliver SCHIROKAUER
MetroHealth Medical Center
United States

Simply stated, health related quality of life (HRQOL) is an individual's or group's perceived mental and physical health - that challenges of which are taken to the extreme in the burn patient.  The relationship of HRQOL with end of life and futility of care are well understood and clearly exist.  There are only a few articles discussing end-of-life (EOL) care and futility in burn patient, with the majority essentially revolving around a similar case, and articles that do discuss futility of care revolve mainly around survival. No article discusses the influence of  HRQOL on EOL care or futility.  However, there are significant ethical impacts of having HRQOL influence EOL and futility of care that are unique to burn patients. These include that burn patients are frequently not capable of making autonomous decisions about their own HRQOL and the burn team may need to act on behalf of the patient. In addition, due to the unique injury, burn patients tend to focus on their current state as an indicator of HRQOL without realizing the potential in the future, and therefore their view of HRQOL may be biased.  The impact of cosmetic versus functional quality of life needs to be addressed as treating these as equals could lead to an ethical fall-out.  The authors provide detailed analysis of each of these points with recommendations on how to address the influence of HRQOL on EOL decision making and futility of care.

 

Ethical choice architecture? A framework for neonatal life/death decision making

André KIDSZUN
Department of Pediatrics, University Medical Center Mainz
Germany

Shared decision making (SDM) to withhold or forgo life-sustaining treatments in neonatal intensive care is a significant matter of research and ethical debate. In current approaches, a number of distinct problems are incompletely addressed. Parents - the primary decision makers - request different degrees of participation and support in decision making. They are emotionally stressed and often have insufficient time for informed decision making. They struggle with translating medical facts into something meaningful to them and are frequently faced with concealed value judgments and caregivers’ treatment preferences.  Probabilistic medical knowledge, moral values, but also the way choices are presented impact SDM. Ethical choice architecture merges these aspects into a comprehensible and transparent framework that is concerned to help parents to make decisions that serve the best interests of their affected infants and their families. Ethical choice architecture is based on three main pillars. (1) The scientific basis of medical information, including prognostic uncertainty and different levels of evidence, need to be disclosed. Ethical choice architecture expects the caregiver’s willingness to support parents in a way that is most appropriate for them, irrespective of the caregiver’s own moral and medical preferences. (2) Value judgments should be recognized and avoided or at least be communicated in an explicit and transparent manner. (3) Choice architecture techniques should deliberately be deployed. That may comprise: adjusting quantity and quality of medical information (e.g. decision aids), framing of options (e.g. defaults), giving feedback (e.g. coherence), and narrative co-construction. Ethical choice architecture is a non-coercive, non-persuasive, but structured and transparent approach that supports parents to the degree they request. It inheres a libertarian paternalistic view and a corresponding understanding of relational autonomy.  In summary, a reliable and practical approach to neonatal life/death decision making is presented that takes human behavioral psychology and paternalism into account.

 

Who makes the decision? Assisting clinicians when advanced directives conflict with surrogate decision makers

Sarah KLEINFELD (Presenting Author)
Medstar Georgetown University
United States

Mary Colleen O'ROURKE
Veterans' Affairs Medical Center, Washington, DC
United States

Mr. N is a ninety-eight year old male nursing home resident with a medical history of dementia, congestive heart failure, atrial fibrillation, and a chronic subdural hematoma who was admitted to the medical center due to a heart failure exacerbation, his ninth similar hospitalization in the preceding year.  His hospital course was complicated by acute delirium that was attributed to interval worsening of his subdural hematoma.  Review of records revealed that Mr. N completed an advanced directive in 2009 which stated his desire to forgo life sustaining resuscitation in this case.  In addition to Mr. N’s prior advanced directive, there were conflicting reports in the chart regarding the presence of a court appointed guardian and/or conservator, documentation suggesting that Mr. N’s son was his healthcare power of attorney, and documentation indicating alternating reversal of wishes by either patient or his guardian regarding resuscitation multiple times even in just the preceding calendar year.  Further concern was raised when the suspicion arose that the guardian was not authorized to make proxy healthcare decisions.  Court documents were not immediately available to the team, so a clinical ethics consult was requested when Mr. N’s condition acutely worsened to address the discrepancies regarding his prior wishes,  his current code status, and the appropriate surrogate decision maker.  This case highlights the challenges that face clinicians attempting to identify the correct surrogate decision maker, particularly when the distinctions between types of advanced directives and surrogate decision makers are not evident.   It also emphasizes the role that organizational ethics and systems play in individual decisions.  As more geriatric patients age to higher risk of dementia and need for court-appointed guardians, this issue of balancing patient autonomy and system efficiency is very important and indicates the need for pervasive systems-based interventions related to end-of-life care issues.

 

Ethics Consultation Involving Potentially Unsafe Discharges: Use of an Ethics Rubric for Assessing Discharge Readiness

Nicholas KOCKLER
Providence Center for Health Care Ethics
United States

Many ethics consultations require prudence in navigating tensions between respecting autonomy and professional duties to benefit and protect patients from harm.  A common example of this in our practice setting is an ethics consultation involving a potentially unsafe discharge.  In such circumstances, providers and discharge planners often recommend that the patient be discharged to a facility that may be able to better accommodate nursing care needs and continue care that began in the hospital.  However, in some cases, providers request an ethics consult when patients decline recommended disposition and express a preference to go home or to a place that professionals perceive to be less than optimal or unsafe.  The role of ethics consultation in such cases is often about finding a way to negotiate the values behind such expressed preferences by the patient and the professional commitments of caregivers.  Sometimes, such negotiation is unable to establish a viable option that meets all value commitments.  When such “viable” options are not feasible, ethics consultation may be in service to having moral confidence that such a discharge is safe enough and ultimately respects patient autonomy and sufficiently fulfills or demonstrates professional obligations to protect patients from harm.  This paper outlines the development and application of a rubric to assess a patient's discharge readiness through the lens of an ethics consultation wherein competing values and professional duties are in tension.

 

Virtues of moral case deliberation moderators

Jos KOLE (Presenting Author)
Radboud university medical center - IQ healthcare
Netherlands

Jelle VAN GURP (Presenting Author)
Radboud university medical center - IQ healthcare
Netherlands

Considerable attention has been paid to the ‘competences’ that clinical ethicists need to acquire in order to do their work ‘professionally’. Far less explicitly mentioned are the ‘virtues’ that would support professional clinical ethicists to do their work properly.  In this paper, we focus on clinical ethicists' role as moderator in clinical ‘moral case deliberation’ (MCD). We argue that an explicit virtue ethical approach towards moderating is both ‘desirable’ and ‘necessary’.   Taking a specific MCD that was recently moderated by a colleague in our clinic as an example, and taking into account observations of and retrospective reflections on multiple MCDs by colleagues, we analyze and argue dialogically how virtues of the moderator may play an essential role in the successful proceedings of this MCD. We will concentrate in our analysis on the interplay of the four cardinal virtues prudence, justice, temperance and courage.  Important points that we elaborate in our dialogue will be the possible ‘added value’ of the concept of virtue in addition to the concept of competence: the intrinsic relation between virtues and the internal goals of a MCD, and the close relation between emotion, attitude, skill and judgment in virtue. Besides, we will discuss how the cardinal virtues support the role of the moderator.  This paper is the first step of a larger empirical-ethical project to explore ‘whether’ and ‘why’ virtues are important for MCD-moderators and other participants, ‘which’ virtues are important an how we can cultivate them (if they are important). We will follow two tracks that contrast and support each other: an empirical explorative approach towards daily practice of MCD in our clinical wards and a philosophical-theoretical track focusing on theoretical insights concerning virtues. We invite attendees of our session to join us in our dialogue on the role of virtues in MCD.

 

Defending The Right to Starve: Hunger Strikers and The Right to Refuse Treatment in Israel

Zohar LEDERMAN (Presenting Author)
National University of Singapore
Singapore

Shmuel LEDERMAN
Haifa University
Israel

In 2015, the Israeli Knesset passed the Force-Feeding Act that permits the director of the Israeli Prison Authority to appeal to the district court with a request to force-feed a prisoner against his expressed will. A recent position paper by top Israeli clinicians and bioethicists, published in Hebrew, advocates for force feeding by medical professionals. The paper presents several arguments to support its assertion.   In this presentation, we posit three interrelated questions:   1. Do prisoners have a right to hunger strike? 2. Should governing institutions force feed prisoners and/or is it ethical to force feed prisoners? 3. Should healthcare professionals force feed prisoners?  We then focus on the first and third questions. We first briefly provide several arguments to support the right of Palestinian prisoners to hunger strike. Next, we critically review the arguments presented in the Israeli position paper, demonstrating that they are all misguided at best. Lastly, we briefly present arguments against force feeding by medical professionals, the most common (and strongest) one being the patients’ right to refuse treatment.

 

Health research in humanitarian crises: Towards a post-research ethics framework

Sapfo LIGNOU (Presenting Author)
Anglia Ruskin University
United Kingdom

Chesmal SIRIWARDHANA
Anglia Ruskin
United Kingdom

Shannon DOHERTY
Anglia Ruskin
United Kingdom

Prea Consortium PREA CONSORTIUM
PREA Consortium
United Kingdom

Distinctive ethical challenges regarding the conduct of health research in humanitarian crises have been identified and addressed in current research ethics literature. However, despite significant contributions, a widely accepted guidance on the issue is lacking. Given that existing ethical guidelines do not readily translate to health studies in challenging situations that are rapidly changing, where immediate attention and response is required, research investigators, IRBs and other stakeholders involved in these unique circumstances must consider decision strategies that are different from those used in ‘normal settings’.  It follows then that a humanitarian research ethics framework in the light of evolving situations is necessary to provide guidance on how research protocols should be developed and assessed and on what should be the ethical principles that guide research in circumstances, where there is great vulnerability and pressing humanitarian needs and where a balance between therapeutic access and scientific endeavour should be achieved. Aim of this paper is to present the initial findings of our project: “Post-research ethics analysis: A tool for ethical reflection and sharing lessons learnt from health research in humanitarian crises”, which aims to improve good ethical practice by gathering evidence on actual experiences of research ethics issues by researchers, research ethics committees and other stakeholders when conducting health research in humanitarian settings. We will present the fundamental ethical issues raised in research in humanitarian settings as they are identified in current literature on health research in humanitarian settings and discuss the limitations of current guidelines and regulations to provide an effective tool of guidance to those involved in such studies. We will then explain how our project seeks to address existing gaps by developing, testing and establishing a tool to analyse and share ethical challenges encounter in health research in humanitarian crises.

 

Ethical and social issues in fecal microbiota transplantation

Yonghui MA (Presenting Author)
Xiamen University
China

Faming ZHANG
Center for digestive diseases, Second affiliated hospital of Nanjing Medical University
China

Fecal Microbiota Transplantation (FMT) has demonstrated efficacy and is increasingly being used in the treatment of patients with recurrent Clostridium Difficile infection. Despite a lack of high-quality trials to provide more information on the long-term effects of FMT, there has been great enthusiasm about the potential for expanding its applications. However, FMT presents many serious ethical and social challenges that must be addressed as part of a successful regulatory policy response. In this paper, we draw on a sample of the scientific and bioethics literatures to examine clusters of ethical and social issues arising in five main areas: 1) informed consent and the vulnerability of patients; 2) determining what a “suitable healthy donor” is; 3) safety and risk; 4) commercialization and potential exploitation of vulnerable patients; and 5) public health implications. We find that these issues are complex and worthy of careful consideration by healthcare professionals. Desperation of a patient should not be the basis for selecting treatment with FMT and the patient’s interests should always be of paramount concern. Authorities must prioritize development of appropriate and effective regulation of FMT to safeguard patients and donors, promote further research into safety and efficacy, and avoid abuse of the treatment.

 

The ethics of fertility preservation for prepubertal children: should clinicians offer procedures where efficacy is not proven?

Rosalind MCDOUGALL (Presenting Author)
University of Melbourne
Australia

Lynn GILLAM
Royal Children's Hospital, Melbourne
Australia

Clare DELANY
Royal Children's Hospital, Melbourne
Australia

Yasmin JAYASINGHE
Royal Children's Hospital, Melbourne
Australia

Young children with cancer are treated with interventions that can have a high risk of compromising their reproductive capacity.  Techniques aimed at maximising reproductive potential for these children are being developed and evaluated.  “Fertility preservation” for children who have not yet reached puberty involves surgically removing and cryopreserving  reproductive tissue prior to gonadotoxic therapy or gonadal decline, in the expectation that strategies for the use of this tissue will be developed in the future.    Fertility preservation for prepubertal children is ethically complex because the techniques lack proven efficacy for this age group.  Current guidance from professional bodies is insufficient, and clinical practice varies substantially between centres.  The key question addressed in this paper is: when, if ever, is it ethically justifiable to offer fertility preservation surgery to prepubertal children?    We present the ethical concerns about prepubertal fertility preservation, drawing both on the broader literature about paediatric fertility preservation and our experience discussing this issue with clinicians in clinical ethics case consultations at the Royal Children’s Hospital, Melbourne. We argue that offering the procedure is ethically justifiable in certain circumstances.  For many children, the balance of benefits and burdens is such that the procedure is ethically permissible but not ethically required; it is the parents’ decision to make.    We suggest that an ethical approach to prepubertal fertility preservation requires more than reliance on research ethics protocols.  We argue that clinical ethics processes are useful to assist clinicians to engage with the ethical issues and enable each case to be examined individually, and describe the clinical ethics process that evolved at our hospital.

 

Gamete Donation: Islamic Sunni and Shia Perspective

Farid MD SHAIKH
The University of Hong Kong
Bangladesh

ARTs have been practiced in Islamic societies within married couples since their introduction. However, there are divergent views over the issue of gamete donation among Sunni and Shia scholars. This paper illustrates the different views of Sunni and Shai Muslims surrounding gamete donation and practices, and ethical issues involving gamete donation in the Islamic world. The study was based primarily on a combination of examination of available literature and some primary sources i.e. relevant verses from the Quran, relevant Hadiths, various fatwas of Sunni and Shia religious clerics. The  literature was retrieved from various databases such as Web of Science, PubMed, BioMed, Philosopher’s Index, Google Scholar using the following key words: egg donation Islam, sperm donation Islam, assisted reproduction Islam, gamete donation Islam, and Fatwas and ARTs Islam.  The study found that Sunni religious scholars are totally against third-party donation and argue that third-party donation is a breach of the marital contract between husband and wife. They also assert that it confuses kinship, descent, paternity and the law of inheritance and may lead to incest among the offspring of donors.  On the other hand, the Iranian Shia religious scholar, Ayatollah Khamenei, proclaimed a fatwa permitting gamete donation with certain religious conditions. His fatwa has paved the way for gamete and embryo donation and has evoked certain reactions from other Shia scholars. Recently, the Iranian parliament also passed an act on embryo donation. But the conditions stipulated by Shia religious scholars in their fatwas contradict with the general practice of gamete donation. The paper argues that  lack of laws and guidelines on ARTs raises many ethical concerns about gamete donation. Only based on religious decrees, gamete donation has been practised in a vacuum of a legal and an ethical framework without foreseeing the well-being of a donor child.

 

Narrative Ethics and the Response to Suicide Threats

Lewis MEHL-MADRONA (Presenting Author)
Eastern Maine Medical Center Family Medicine Residency
United States

Denise MCKEE (Presenting Author)
Eastern Maine Medical Center Family Medicine Residency
United States

Barbara MAINGUY (Presenting Author)
Coyote Institute
United States

Speaker 1 presents case studies of suicide threats and attempts. She compares the responses of medical personnel to patients who make serious and completed suicide attempts to threats or gestural attempts made repeatedly by people who have not actually made an attempt or who have only made mild attempts. One representative male patient drinks heavily and when his partner kicks him out of the house, presents to the Emergency Department (ED) where he seeks shelter, food, and care stating he is suicidal. Using his case and others, we discuss the ethical options for how to respond to repeated threats of suicide.  Within the American/Maine health system, patients like this can present repeatedly with threats of suicide that resolve in several days.  Medical personnel express their anger at such patients for overutilization of resources.  When we adopt a narrative perspective and collect the stories guiding behavior, these patients appear to be optimizing available resources. Questions arise as we seek solutions. Should the times a person can present to the ED with claims of being suicidal be limited? Can we establish levels of suicidal risk for which we will not intervene in a litigious society like the United States?   Speaker 2 moves this discussion to indigenous suicide attempters in Canada and how we can address them.  A total of 54 patients were interviewed in depth. The mean age was 21.0 with a standard deviation of 6.1 years.  Psychotherapy proceeded with 27 of this group.  Twenty-four of these patients made no further suicide attempts.  No patients completed suicide.  Psychotherapy lasted an average of 9 sessions, the range being 1 to 16.  Frequency ranged from weekly to monthly.  Of the patients who did not engage in psychotherapy, 21 attempted suicide again at least once.  Average length of follow-up was 15 months, while the range was from 5 to 19 months.  Medication was available to these patients if desired. Twelve patients chose to take medication (primarily SSRI’s), five from the group who did not choose psychotherapy, and 7 from the group who did.  Review of the life story interviews revealed three common plots/themes preceding suicide attempts: 1. Relationship break-up, usually sudden, unanticipated, involving a third person. 2. Being publicly humiliated by another person(s), accompanied by high levels of shame. 3. High levels of unremitting, chronic life stress (including poverty) with relative isolation.  Speaker 3 reviews the five common strategies, successful in psychotherapy with aboriginal suicide attempters: 1. Create delays and alternative pathways from the habitual thinking that occurs before a suicide attempt. 2. Among these alternative pathways, create a sense of narrative agency of being a person with other options for revenge and other ways to show people how much the hurt has been. 3. Build narrative competence by assisting the Aboriginal suicide attempter to build and rehearse stories of positive futures, face-saving when necessary. 4. Find islands of humor, which can. 5. Engage culture and elders to the extent possible.  We conclude with discussions about responses to suicide threats that balance cost and effectiveness.

 

The weight of expectation: challenges in implementing advance care planning

Sumytra MENON (Presenting Author)
Centre for Biomedical Ethics, National University of Singapore
Singapore

Marijke KARS
Utrecht University
Netherlands

Johannes VAN DELDEN
Utrecht University
Netherlands

This paper focuses on a qualitative study conducted in Singapore that explored the perspectives of 61 doctors, nurses, medical social workers, caregivers and patients with life-limiting conditions, on advance care planning (ACP). A dominant theme that emerged from the study was participants’ expectations. Patients and caregivers expectations regarding having ACP conversations were dominated by genuine concerns such as making the wrong decision, causing the patient to lose hope, and not burdening family members. Healthcare professionals expectations, to a limited extent, reflected those of patients and caregivers. They expected that ACP conversations might burden family members, and cause patients to lose hope but they were also concerned that ACP may not be beneficial if it is not legally enforceable, and it may not be helpful to some patients, such as those who refuse to make decisions, preferring instead to defer to the family member paying for treatment. ACP has been introduced to give patients a structured and supported opportunity to express their future preferences for healthcare, and thereby respect their autonomy. However, ACP also has the potential to significantly disrupt the settled expectations of healthcare professionals, patients and caregivers, with respect to decision-making at the end of life. This paper will explore the societal and legal framework that seeded these expectations and allowed them to flourish, and consider steps that could be taken to sensitively and successfully implement ACP.

 

Are Palliative Care Patients Too Vulnerable to Participate in Research? Perspectives on an Ethical Dilemma

Jessica MOORE (Presenting Author)
UT MD Anderson Cancer Center
United States

David HUI
UT MD anderson Cancer Center
United States

Donna ZHUKOVSKY
UT MD Anderson Cancer Center
United States

Elizabeth O'TOOLE
Case Western Reserve University - MetroHealth
United States

Are Palliative Care Patients too Vulnerable to Participate in Research?  Perspectives on an Ethical Dilemma Good medical practice requires evidence of effectiveness to address deficits in care, strive for further improvements, and justly allocate scarce or finite resources. Those who deliver Palliative Care are dedicated to providing the highest quality of care that supports the needs of the whole patient as a person. Scientific advances in this field are partially limited by perceived ethical challenges that distinguish dying patients as a vulnerable population requiring special protections, thus limiting their participation in research. For example, only 13% of studies in the palliative care literature involved patients in the last month of life.   There has been debate of this issue in the literature for almost fifteen years leading to the conclusion that, provided investigators compassionately apply ethical principles to their work, research involving palliative care patients is justified. Our panel consisting of bioethicists, palliative care physicians and clinical investigators will be discussing many important themes related to conducting research in palliative care populations, including (1) the needed precautions for research in a perceived vulnerable population balanced with the need for an evidence base for quality of care and access to the best options (Moore & Zhukovsky); (2) unique burdens and benefits (Zhukovsky); (3) concerns regarding informed consent, voluntariness, and decision-making capacity (O’Toole); (4) logistical difficulties (Hui); (5) conflicts of interest (Hui); and (6) rigorous review of research proposals (Hui and O’Toole).   We will revisit the debate regarding what constitutes vulnerability, what protections are necessary, how this can be balanced with access to and general advancements in quality improvements, and the importance of conscientious scientific design and rigorous review, by presenting both sides of the argument. Ultimately, though there is concern about research in what is widely considered a vulnerable population, research that has been rigorously reviewed for adherence to the regulations meant to protect all research participants and provides access to quality care should be permitted.  At the conclusion of this presentation the audience member will be able to: 1. Recall the elements of good research design that have been identified by others to be areas of concern for the ethical conduct of research in a participant population considered to be vulnerable 2. Articulate arguments as to how and why research can be conducted in the palliative care patient population, even at the end-of-life 3. Integrate sound ethical approaches regarding clinical research into their own Palliative Care practices

 

Jehovah's Witness and Liver transplant : Ethical dilemma

Shrijit NAIR (Presenting Author)
St Vincents university hospital
Ireland

Niamh CONLON
St Vincents University Hospital , Dublin
Ireland

BACKGROUND  Jehovah’s witness present a unique challenge in medical management. Religious concerns play significant role in clinical decision making of these patients.  The issue of transplantation is not straightforward and is compounded by the refusal for blood transfusion. Transplantation itself was not allowed for Jehovah’s Witnesses until 1980’s, which views decision to transplantation as an individual choice under assumption that no blood is transplanted. We present an unusual case of ethical dilemma of a Jehovah’s Witness being considered for orthotropic liver transplant.  CASE REPORT  A 58-year-old gentleman, Jehovah’s Witness who have been diagnosed with Hepatitis C cirrhosis and decompensated liver disease. The patient has grade 1 encephalopathy post trans jugular intrahepatic Porto systemic shunting. Patient has a modified end stage stage liver disease score of 9. Past histories of intravenous drug abuse but currently clean. He lives with his wife and daughter and has a good family support. He is pre operative investigations are normal. He was discussed at the multidisciplinary meeting for orthotropic liver transplant. The salient points of the meeting are follows: - Meeting attended by transplant surgeons, anaesthetist , psychiatrist , haematology, hepatology Patient will accept only cell saver or synthetic blood products  Patient happy for liver transplant  In the meeting it was said that liver transplant would improve the quality of life of this patient.    DISCUSSION  This case is a unique case in terms of professionalism and ethical issues involved with religious belief driven clinical decisions in treatment for Jehovah’s Witnesses. Firstly refusal of blood transfusion for a liver transplant surgery which involves significant blood loss putting the life of patient at risk and secondly giving organ, which itself is precious and rare to someone who in which there is high risk of organ failure due to patient autonomy .

 

A doctor in the house - Ethical considerations when doctors treat themselves and those they are close to

Kanny OOI 
Medical Council of New Zealand
New Zealand

Having a doctor in the family is often regarded as beneficial as there is easy access to medical advice and care. It is common for doctors to treat themselves and those they are close to, and some doctors even consider it their right to do so.    However, such care arrangements are not without pitfalls. Primarily, being in a close relationship with someone and being their doctor simultaneously can impair a doctor’s judgement about the correct diagnosis and course of treatment. The lack of clinical objectivity can in turn lead doctors to treat problems that are beyond the doctor’s skill and competence or to be pressured to do so by someone close to the doctor. Other pitfalls include trivialising or over treating a medical condition, failing to document the care provided, and making assumptions about a person’s medical history and personal circumstances such that the doctor avoids asking sensitive questions or omits to take a full history and to examine the patient. Consequently, despite good intentions, a doctor may not provide the best quality treatment to those they are close to.     This paper explores the ethical issues that arise when doctors treat themselves and those they have a close relationship with. It argues that in the vast majority of clinical situations, doctors should not engage in such care arrangements, and explains why it is important for doctors to have their own general practitioner. Several cases where doctors have been censured by the Medical Council of New Zealand for engaging in self-treatment or in treating those they are close to will be discussed. The paper concludes by outlining exceptional circumstances where it may be appropriate for doctors to treat themselves and those they are close to, and what measures doctors should take in those instances to safeguard themselves and those they treat.

 

Aid-in-Dying Session

Mathew PAULEY (Presenting Author)
Kaiser Permanente Northern California
United States

Jana CRAIG (Presenting Author)
Kaiser Permanente Northern California
United States

Theresa DROUGHT (Presenting Author)
Kaiser Permanente Southern California
United States

In October 2015, the End of Life Option Act legalized Physician-Aid-in-Dying (PAD) (also commonly called Physician Assisted Suicide) in California. Hospitals, healthcare providers, and health agencies then had until mid-June 2016 to decide whether they would opt-in or opt-out of providing PAD and create policies and workflows to respond to requests when the law became active. Kaiser Permanente (KP) is the largest managed care organization in the United States, and its two largest regions are in California accounting for 11 million Members divided fairly evenly between the North (NCAL) and the South (SCAL) (roughly 28% of the population of California).  Although each region is a part of the parent organization, both regions operate with significant autonomy from one another. KP in California had two advantages in responding to the new law: 1) KP had experience providing PAD in its Pacific Northwest regions (Washington State and Oregon) and; 2) KP had clinical ethics leadership in both of its regions to provide direction. KP NCAL and SCAL worked both independently of each other and collaboratively with each other to prepare for PAD.  This 1-hour symposium will include ethicists from both NCAL and SCAL regions and will seek to provide insight into the regions’ processes, approaches, moral concerns and strategies for addressing Physician Aid-in-Dying. With thousands of doctors in the Permanente Medical Group, and thousands of potentially qualifying patient-members, ethicists at KP were directly in the middle of a storm of changing attitudes toward death, the practice of medicine, and changing institutional policies. California is the 5th state to legalize PAD, and it is thought that adoption will now accelerate across the other states.   This Symposium will break-down as follows:   3 speakers, speaking for combined total of 30-35 minutes, leaving 25-30 minutes for panel discussion and questions.   The speakers and their specific topics are:   Speaker 1 will speak specifically on the work done preparing for PAD rollout in NCAL, collaboration with SCAL and other health care organizations, and obstacles faced. Specific attention will be given toward the role ethics played in the process. Speaker 2 will speak on the 11-months-later perspective. KP has been collecting both quantitative data and  qualitative information about the PAD experience.  Moreover, Ethics will begin a review process at the 6-months mark to address concerns, processes, and unforeseen matters regarding PAD. ICCEC 2017 will occur 11-months after PAD went into effect in California, and relevant information will be provided on nearly a full year of work. Speaker 3 performed a values clarification exercise with approximately 150 physicians prior to and as the legislation went into effect, in an effort to establish a baseline of physicians feelings around PAD, and to help guide policy implementation. Dr. Drought will present her findings as well as information on the learnings in Southern California.

 

Decisional capacity and autonomous choice with regard to the Jehovah’s Witnesses blood policy: A study in justified paternalism.

Daryl PULLMAN
Memorial University
Canada

The position of the Jehovah’s Witnesses (Watch Tower Society) on the refusal of blood transfusions has long been a matter of consternation for health care providers. Although the courts have ruled that the decisions of competent adults must be respected, and health care providers have come to appreciate the need to care for “the whole person” including respecting beliefs that may appear irrational or harmful, dealing with individual believers can still be a source of moral distress. The Watch Tower Society has done an admirable job of establishing hospital liaison committees to educate health care providers about their beliefs and with regard to alternative bloodless surgical procedures, and to support Jehovah’s Witness believers in navigating the health care system.  Nevertheless many still struggle with whether it is ethically appropriate to challenge individual believers about their beliefs and/or to attempt to persuade them otherwise.  In this paper I revisit the question of autonomous choice and justified paternalistic intervention as it pertains to members of the Jehovah’s Witness faith. Central to the argument is the general claim that identifying with a particular faith community does not entail that one subscribes to every particular belief. This is true for Roman Catholics, Muslims, Buddhists and virtually any faith tradition. So while the official orthodox position of the Watch Tower Society with regard to that church’s beliefs is one thing, the specific beliefs of any individual Jehovah’s Witnesses could be quite another. Hence it behooves health care providers to explore the individual beliefs of particular patients and to engage in debate when necessary. It is argued that such paternalistic intervention can be justified, and in some instances may even be morally required.

 

Why do ethical standards drop among interns in medical settings? Ethical erosion in medical psychology as a test case for other medical professions

Rebecca REICHER-ATIR (Presenting Author)
THE ACADEMIC COLLEGE OF TEL-AVIV - JAFFA
Israel

Sigal LEVY (Presenting Author)
THE ACADEMIC COLLEGE OF TEL-AVIV - YAFO
Israel

Rooty YAVOR
Private clinic
Israel

A previous study found that psychology internes in medical institutions tended to ignore ethical issues more at the end of their internship than at the beginning. This lowering of ethical standards, termed ethical erosion (EE), was found to be a risk factor for moral distress (MD). Consulting relevant others has proven crucial to coping with ethical conflicts.  The current follow-up study examined reasons for EE and interns’ patterns of consultation regarding moral and ethical concerns. Findings show that the three leading reasons for EE are: fearing damage to self (“my professional future is in the hands of my seniors, so I had to keep quiet”) (M=3.77, SD=0.172), obeying authority due to pressure and submission (“my seniors pressured me into falling into the conventional behavior patterns”) (M=3.6, SD=0.152) and avoiding conflict or confrontation (“I knew what the right way to act was but felt uncomfortable doing so”) (M=3.48, SD=0.177).  Those reasons for EE correlate with interns’ preferences regarding whom to consult. For example, the more interns fear damage to self, the more likely they are to consult with friends or family outside the medical institutions, while the more interns comply with authority as matter of principle rather than pressure, the more they tend to consult in-house supervisors. The findings are organized according to notions of ethical silence; distinction between two styles of ethical norm assimilation ? blind-obedience vs. open-minded-adherence; and the idea that ethics is a never-ending project among all the medical professions. "

 

Evaluation by case-series: top themes of ethics consultations in psychiatry as compared to somatic medicine

Stella REITER-THEIL (Presenting Author)
University Hospital Basel
Switzerland

Jan SCHÜRMANN
Psychiatric Hospitals of the University Basel / University Hospital Basel
Switzerland

Background Clinical Ethics Support (CES) in psychiatry, especially its acceptability, is still developing. Its evaluation can strengthen the quality and reputation of the field. Evaluation research on CES in psychiatry is even rarer than in somatic medicine. Approach What are the top issues brought to Ethics Consultation (EC) in psychiatry in comparison to somatic medicine? This question was investigated in a series of 50 psychiatric and 50 somatic cases of EC on demand. Classification of themes and evaluation judgments were made by at least two researchers. Results Among the 100 cases the top five themes were: coercion (28%), care management (24%), treatment-plan evaluation (17%), end-of-life-care (16%), and pregnancy / assisted reproduction (12%). In EC in psychiatry, the single most significant main ethical issue is coercion (34%), followed by care management and treatment-plan evaluation (both 20%). In EC in somatic medicine the top 3 main ethical issues concern end-of-life care (28%), pregnancy / assisted reproduction (22%), and coercion (20%). Decisional capacity was given in 34% of all EC in somatic cases, while only in 10% of all EC in psychiatric cases; competence was more often impaired or questioned in EC in psychiatry (40% resp. 22%) than in EC in somatic medicine (24% resp. 12%). In total, the patient’s competence is either unclear, impaired or not given in 77% of all EC cases. Feedback from requestors whether CES was helpful was positive in both fields (100%). Conclusions As EC in somatic medicine and in psychiatry focuses on partly different topics, ethics consultants need to prepare for handling these themes competently. Learning from the advanced evaluation of CES in somatic medicine is certainly useful for CES in psychiatry, although EC in psychiatry does require specific adjustment.

 

Healing Conflict ? Mediation in End-of-Life Care"

Amy SALAPAK
WA Department of Health
Australia

End-of-life care presents a myriad of challenges for healthcare institutions, clinicians, patients and their families. Factors such as advances in medical technology, differential opinions as to prognosis and treatment, and various cultural and family dynamics all have the potential to create a climate of high emotion, dissension and conflict.  In an acute critical care setting there is often limited time and expertise for institutions and clinicians to focus on dealing with conflict as well as the medical and ethical complexities that may arise in end-of-life decisions and care. Such a tension is frequently required to be carefully balanced against the desires of the patient and the wishes of often conflicting family members and surrogate decision makers.   It is often said that 10% of conflicts are due to differences in opinion and 90% are due to the wrong tone of voice. Mediation provides a powerful means to allow parties in a dispute to communicate and to be heard. It presents an opportunity to assist parties to identify issues, recognise interests, develop options, and consider alternatives to empower them to make decisions in an effort to reach an agreement to resolve the dispute.  This presentation will identify the nature, causes and the cost of conflict in end-of-life disputes. It will explain the process of mediation, and the role of a mediator. This presentation will then explore how mediation can be used as an effective tool to resolve conflict, and to establish agreement in order to deliver the best quality end-of-life care for the patient.

 

Personalized Medicine Challenges Boundaries Between Research and Care: Could Ethics Consultation Provide Answers?

Salla SAXÉN (Presenting Author)
University of Eastern Finland
Finland

Heikki SAXÉN (Presenting Author)
University of Tampere
Finland

Personalized medicine, sometimes labeled as a “new paradigm for healthcare,” refers to the tailoring of care according to patients’ individual attributes, especially in relation to their genetic and molecular profile. In practice, this personalization means moving toward treatments that have been targeted to small patient groups, potentially subcategorizing the patients into ever smaller groups as understanding and technologies improve.   In order to personalize treatment according to patients’ genetic profiles, patients would have to go through much closer genetic screening during the span of their treatment. For example, since the genetic profile of cancer cells changes as the disease develops, a need to constantly analyze patients’ genetic profile is raised. How does this affect the traditional roles of different kinds of professionals involved? Should scientists’ findings routinely influence treatment?   These scenarios challenge traditional boundaries between research and care, as typically the lines have been drawn between scientific advancement and individual health benefit. Even though participating in research may have potential to lead to individual health benefit for patient-research subjects, health benefit should not be the reason to participate in medical research. Blurring the lines between treating a patient and carrying out scientific research raises many ethical questions, for example, concern for potential hidden conflicts of interest as it may be harder for outsiders to distinct treatment goals from research interests.   As personalized medicine brings clinicians and scientists closer to each other, flexible structures may be needed to allow free flow of communication, moving between the IRBs, clinical ethics committees, patients, clinicians and scientists in cases that raise conflict or concern. We suggest that the bridging of communication and identifying ethical issues when visible, traditional lines are blurred, may be a role suited for ethics consultation services.

 

Incidental Findings and Data Sharing: From Perspectives to Consensus Policy

Owen SCHAEFER (Presenting Author)
National University of Singapore
Singapore

Jacqueline CHIN
National University of Singapore
Singapore

Tamra LYSAGHT
National University of Singapore
Singapore

Sangeetha WATSON
National University of Singapore
Singapore

The growth of genetic testing for clinical purposes worldwide has raised a number of ethical concerns, including reporting of incidental findings (findings not originally sought in a test or intervention but that may be relevant to the patient) and sharing of clinical data with researchers.  Absent formal legal regulations, resolving these issues requires institutions to develop local policy.  Consensus policy guidance is desirable, because it a) provides institutions with a well-reasoned and informed framework; b) creates consistency, leading to less arbitrary differential treatment based on institution; and c) is more likely to be taken up due to its consensus nature.  In this paper, we report on a Singaporean project that uses empirical evidence to develop such local consensus policy guidance.  After analyzing the latest literature on incidental findings and data sharing, we developed a structured focus group approach.  Stakeholders (both clinicians and patients) were presented with a set of circumstances and policy options, and asked to discuss and justify their policy preferences.    We also report on the outcomes of follow-up stakeholder workshops facilitated in Singapore with the purposes of generating consensus on key aspects of incidental findings and data sharing policies.  The workshop and focus groups then form the basis for a set of consensus policy white papers for uptake by Singaporean institutions.  Our findings and experiences will be of interest to those studying the ethics of incidental findings and data sharing, particularly those from countries that are also in the process of developing locally tailored ethics policies related to clinical genetic testing.

 

Explaining Ethics Consultations in a Video

Kurt SCHMIDT
Center for Medical Ethics at the Agaplesion Markus Hospital
Germany

Although Clinical Ethics Consultation (CEC) has been established in our hospital for years and is well known to longstanding staff, patients and next-of-kin usually have their first contact with CEC as the result of an (unplanned) stay in hospital. Even if somebody has informed them about it beforehand, it is still difficult for next-of-kin to imagine what will happen during a consultation because of the stress they are under and the decisions they have to make. Having often experienced this problem, the Ethics Committee of the our hospital decided to make a video showing the course of such a consultation. This video is available to next-of-kin or other interested parties on the internet and can also give hospital staff a better insight into the procedure. For the Ethics Committee, it was not only the finished video which was important, but also the creative process and writing of the screenplay: the video shows an anonymized consultation in which all the participants play" themselves; only the two family members are played by members of staff. But which elements of an ethics consultation was the video to highlight? Which elements were particularly important? Which elements required further explanation? In writing a screenplay for the internet, all participants were forced to reach an agreement about its central content and principal message in the full knowledge that their underlying approach or method would become "public". One of the things which came out of this process was the importance of the right "atmosphere" in a consultation, and that this ?" and not only the contents ?" should also be captured in the video. Technical support (filming, soundtrack, editing) was provided by professionals. Following an introduction, the talk will include a presentation of the video (6 minutes) and a report of the experiences resulting from it."

 

Balancing Compassion and Honest: A Case Study in Communicating Difficult and Unwanted News in Pediatric Medicine

Nneka SEDERSTROM(Presenting Author)
Children's Minnesota
United States

Maurice SHOLAS (Presenting Author)
Children's of Minnesota
United States

The culture of medicine has evolved from paternalistic to a more patient/family-centered model. That change has done much positive for the patient doctor relationship. However it has introduced challenges to the practice of medicine; chief among which is a barrier to communicating information that is difficult for the patient and families to receive. There is such a prize placed on keeping patient's and families happy that care givers actively or subconsciously avoid topics and information that are perceived as hurtful even if they are essential to the management of the case at hand. This paradox will be discussed in this case study regarding post critical care maintenance and rehabilitation in conflict with parental autonomy for decision making. Understanding the role of surrogate decision makers and communicating difficult and unwanted news for patients who suffer significant injury and require long intensive care management is the point of this case study. As we will describe, the pendulum from paternalistic to more family/patient centeredness can at times be a hindrance to good quality clinical interventions. This topic will look at this new problem through the lens of a severely ill child and his mother refusing standard rehabilitation post ICU. This is a case of a young male with metastatic medulloblasoma that resulted in a high cervical spinal cord injury. He received chemotherapy and radiation therapy such that his survivability from an oncological standpoint was strong. However, the spinal cord injury left him ventilator dependent, and without functional use of his arms and legs. Based on standard scoring and classification, it was predicted that his paralysis was significant and durable. However, the patient's mother rejected the validity of that assessment and forbade the treatment team from revealing the diagnosis and prognosis to the patient which led to compromised care and his eventual death.

 

No one Should Die Alone": A Discussion on Neonatal End of Life Practices when Parents are Absent"

Nneka SEDERSTROM (Presenting Author)
Children's Minnesota
United States

Carolyn SERIE (Presenting Author)
Children's Minnesota
United States

Kris CATRINE (Presenting Author)
Children's Minnesota
United States

Heidi KAMRATH (Presenting Author)
Children's Minnesota
United States

For most families, an infant’s birth is a time of pure joy but the lives of some neonates (babies under 28 days of life), are filled with hardships. Many of these neonates are admitted to the Neonatal Intensive Care Unit (NICU), a time which is highly stressful and emotional for all involved. For some babies, the beginning of life and end of life occur close together and when parents are facing the death of their infant, the distress can be overwhelming leading to a crippling sadness for both families and the team providing care for the infant. The clinical team often provides not only medical care but also focuses on memory making for the family before and after the infant’s death. This includes but is not limited to maximizing bonding time, hand and foot molds, bathing the infant, and newborn photos. These rituals are important for the infants, families and staff but what about the neonates who are not able to have their parents with them? Data shows that babies who are able to be held skin-to-skin with a parent are calmer and less distressed, a goal that is of utmost importance at the end of life. How do we deal with the added stress of not having parents around when their child dies? Understanding how to address the clinical team distress, potential patient distress, and navigating absent parents is a multidisciplinary team goal. Through the lens of 2 cases of neonates facing end of life without parents present our panelists will address the ethical, psychosocial, palliative, and clinical complexities involved in their care. The death of babies is a global tragedy. These cases will highlight some of the issues unique to dealing with end of life care in neonates at a Children’s Hospital in the Midwest of the United States.

 

Exploring the Interface between Palliative Care and Physician Assisted Death: Growing tensions between Policy, Ethics and Clinical Practice

Linda SHEAHAN
SESLHD
Australia

The issue of 'Physician-Assisted Death' (PAD) remains highly contested. This said - an increasing number of jurisdictions around the world have introduced legalised assisted death, in the form of 'Physician Assisted Suicide (PAS) and/or Voluntary Euthanasia (VE). This shift in the international context toward a more widespread acceptance or endorsement of assisted death is coupled with an under-explored tension in clinical practice, arising from within palliative and end of life care practitioners. The international literature demonstrates that physicians who are more likely to deal with dying patients are less likely to support legalised PAD. The question of why has not yet been adequately explored empirically. This paper will revisit the ethical arguments for and against legalised assisted death, touch on the international experience of assisted death in jurisdictions where it has been legalised, and examine the recent shifts toward acceptance of end of life practices related to 'hastening death' (both in ethics and the law), in the context of best practice palliative care.

 

When the bosses do not like your ethics consult recommendations

Shahla SIDDIQUI
KTPH/ NUS
Singapore

Clinical ethics committees function as independent unbiased bodies that are consulted for a variety of clinical ethical dilemmas that clinicians may face. These ethical/ moral tensions may arise in the care of the patients and may involve end of life decision making, conflicts with surrogates or within the medical teams as well as questions about professionalism, a general question about patient privacy or confidentiality, and a question about ethical practices in the workplace, human resources, resource allocation, or the business practices of the institution. Although traditionally employees do not raise issues that compromise their position in the workplace, there are times when in advocating for the patient may come in direct conflict with the senior management of a hospital. I share a case of a foreign worker who presented to the hospital with chest pain and was found to have a liver tumour. The surgeon offered resection however the patient could not pay for the procedure. An ethics consult was sent and a unanimous recommendation of surgery was the reply from the CEC. However the senior management of the hospital took exception to this as they were not in agreement and rebuked the CEC.

 

The eleven-year-olds who want their legs amputated

Merle SPRIGGS (Presenting Author)
University of Melbourne
Australia

Lynn GILLAM
University of Melbourne / Royal Children's Hospital
Australia

Doing things to alter children’s bodies or their appearance when it is not medically necessary is controversial. Examples are infant male circumcision and cosmetic genital surgery for infants at the request of parents.  A recurring theme in these debates is the idea of leaving the decision to the child when old enough to make their own decisions. We are presenting two very specific examples of a child (both eleven years old) where the decision to have a major surgical alteration to their body is their own.  One is based on appearance concerns and the other is about physical function. They both want a leg amputated under circumstances where it is not medically necessary. Neither are what is generally considered to be a “mature minor”.   A key feature of these two cases is uncertainty; uncertainty about what is best for these children, what they will think in the future, and how much weight to put on their desires at the age of eleven.  In particular, these cases prompt us to think about how to balance children’s current distress with possible future distress.  This is important to think about.  It is central to the work of clinical ethics committees and clinical ethics consultants in the paediatric setting where having to balance these things is common.  These cases also highlight the important role for children in decisions about their immediate and long-term interests ? without the need for misleading or potentially damaging pronouncements about their competence.   "

 

Institutionalized Consent: A mask to protect 'patient autonomy'

Supriya SUBRAMANI
IITMadras
India

Consent discussions can be traced across most of the human interactions in the society. There is ocean of literature on the concept of consent based on different contexts and applications. Context plays an important role in understanding the concept of consent. This paper is an exercise in conceptual and empirical analysis. It is to identify what do court judgments, surgeons and patients and patients' family members mean when they refer to consent in medical practice. This paper employs qualitative research methodology using content analysis to contested consent court judgments and in-depth interviews of above stated participants. The major goal of this paper is to  examine the significance and functionality of the consent expected and applied within law and medical practice in India. This paper presents, based on the analysis, that institutionalized consent is observed and it's a tool to protect physical autonomy as it protects bodily integrity or physical wellbeing and also which underscores respect to patient's right to information. I will elaborate on how respect for patient autonomy is capsuled within physical wellbeing of the patient. In this paper, I critically question the ethical and legal basis of institutionalized consent and state it does not protect patient autonomy in it's intrinsic value. I further analyze and examine its role within law and medical practice and present my argument that in order to value consent to be morally transformative transaction it should go beyond institutionalized consent. Thus, this paper explores the present understanding and application of consent within medical law and practice in Indian context.

 

Trade-off between health informatics access and dissemination and Zika/Ebola epidemics ethical, social and medical issues

Ernest TAMBO (Presenting Author)
Public Health P Laboratory, Jeddah, Saudi Arabia
Saudi Arabia

Adama KAZIENGA
Public Health Pests Laboratory of Jeddah Governate, Jeddah, Saudi Arabia
Saudi Arabia

Emad Im KHATER
Public Health Pests Laboratory of Jeddah Governate, Jeddah, Saudi Arabia
Saudi Arabia

Chryseis F CHENGHO
Coventry University, Leciester
United Kingdom

Michel TALLA
Africa Intelligence and Surveillance, Communication and Response (Africa DISCoR) Institute, Yaoundé, Republic of Cameroon
Cameroon

Zika and Ebola epidemics devastating and complex complications exposed the flaws in the global surveillance architecture to deal with cross-border health pandemics. This paper examines the impact of information technology-based health informatics data access and dissemination and Zika virus (ZIKV)/ Ebola epidemics complications implications in care delivery solutions in pre-, during and post-ZIKV epidemics response. Our findings showed that IT-based health informatics is evolving and minimum global standards to open access and sharing of relevant epidemics data and information on risk communication. Public alertness, health promotion and education, counselling and guidelines on syndromic surveillance and response were the most common goals and objectives during viral epidemics reduce and avert further transmission. Using mobile applications as means of communication raises issues regarding personal data security, privacy and confidentiality. Health informatics use via open channels (e.g. Tweeting, public image-sharing websites, public forums), and individuals posting sensitive information presents potential threat to personal  and community informed consent  and security, misinformation and stigma related Zika and Ebola epidemics showed the need to be addressed and developed legal, social and medical guidelines and regulations. Moreover, we found that the uses in healthcare services delivery, management, and planning was also documented and have played a critical role in raising awareness ZIKV travel restriction and delay pregnancy to women at reproductive age, effective use of personal protective equipment and against about ZIKV infections through cultural practices, communication with affected individuals, training health responders, advocacy, and monitoring and evaluation capabilities. Zika and Ebola epidemics emphasize the importance of ethical practice, patient dignity, and the process of seeking consent; while solving and forecasting unforeseen and emerging negative consequences. Addressing the consequences including medical and socio-ethical issues regarding privacy and confidentiality, security, informed consent, autonomy, accuracy of information, stigmatization and marginalization allow better preparedness and response solutions.

 

Reconciling the Science of Medical Advancements at the End-of-life with the Art of Dying Well: Advocating for the Introduction of Legislation on Advance Decisions in Malaysia.

Mark TAN KIAK MIN
St. Mary's University, Twickenham, London
Malaysia

End-of-life care decision-making in Malaysia is difficult because of the multi-cultural and multi-religious aspects of its population. This becomes even more challenging as most patients rarely communicate their wishes for treatment beforehand.  How can we know what treatment patients want and how can we be sure that we are really acting in their best interests? The answer lies in planning for our death, which firstly requires patients to have a conversation with someone else about this topic, and secondly to have it in some recorded form.  In attempting to advocate for the introduction of legislation on Advance Decisions (AD) that is currently lacking in Malaysia, this presentation first explores some different forms of ADs currently available including Living Wills, Advance Directives, Lasting Powers of Attorney and the Physician Orders for Life-Sustaining Treatment form. This is followed by a brief consideration of current AD legislations in the United Kingdom and Singapore, and also some other relevant Malaysian legislations and guidelines.   The presentation subsequently highlights some of the current medical, legal, ethical and social aspects of end-of-life care in Malaysia that will help determine the best possible approach to implementing AD legislation here.  A step-wise approach is then suggested to overcome this problem. The first step of this approach entails encouraging people to talk about their wishes and life values, and the second simultaneous step involves improving the communication skills of all parties involved in end-of-life care. These need to be done before the third step of legislating provisions for ADs can take place.   We conclude by identifying and examining how legislating ADs may subsequently impact decision-making practices on end-of-life issues in Malaysia, This includes the possibility of changing current consultation practices to implement a shared decision-making approach, and the prediction of an increase in demand for palliative care services.

 

Outpatient ethics consultation: How can ethics consultants support health care professionals and patients in decision making?

Sandra THIERSCH
Institute for Ethics, History and Theory of Medicine, Munich
Germany

Outpatient ethics consultation: How can ethics consultants support health care professionals and patients in decision making?  Context: In 2012, an outpatient ethics consultation was founded by a multidisciplinary team in Bavaria. The target group contains family doctors, nursing homes, relatives and patients. During the last three years, 48 case deliberations were made. Besides the realization of case deliberations, the outpatient ethics consultants also want to act in a preventive way. This means that ethics consultants try to qualify capable persons to make “right” medical decisions in case of consent inability. For example, one possibility is to prepare an advance directive. Another point is the health care professionals’ awareness training about prevailing legal norms, especially the mental capacity act in Germany.  But how can ethics consultants manage this job? And what are the expectations of the target groups?  Method: To answer the preceding questions, three qualitative guideline oriented interview studies with 32 persons were made between 2013 and 2015. Ethics consultants, members of the Bavarian outpatient ethics consultation and persons who requested a case deliberation were interviewed. In 2015, a questionnaire study with local family doctors was conducted.  Results: The ethics consultants offer further educations for health care professionals. They also offer informative meetings in nursing homes about advance care planning.  The ethics consultants reported that residents as well as nurses were very glad and thankful about the informative meetings. Sometimes, residents and even their relatives decided to prepare an advance directive after the meeting.  Discussion: There are many possibilities for ethics consultants to work in a preventive way. People are often grateful about the offer. But there are also problems: Sometimes, the offers aren’t well-known or persons, especially family doctors and nurses, are afraid of using it. And the ethics consultants’ participation in nursing rounds is often not permitted.

 

MEDICAL MIGRATION IN  GLOBAL CONTEXT - ETHICAL ISSUES REGARDING THE INTEGRATION OF CULTURAL DIVERSITY

Elena TOADER
“ GR.T.POPA“ UNIVERSITY OF MEDICINE
Romania

In a globalized world which does unavoidable contacts increasingly closer between different societies and cultures, migration of doctors faced with the problem of integrating cultural diversity. Ethical problem is represented by how the migrant doctor can maintain their own values and genuine respect for a variety of values, traditions, experiences from varied professional and social circumstances. As a approach, we extract the main ethical issues that the interconnection between globalization, migration of doctors, multicultural context involve them in the medical field. For a realistic picture we analyzed information obtained, from national context, through participatory observations and comprehensive interviews conducted during the jobs fairs for doctors Career in white" with staff representatives of the recruitment companies, participating physicians present at the jobs fairs and physicians who have experience or intend to experience migration. All aspects of the empirical work will be reported to the debate litertura specialty and legal framework. In conclusions we emphasize the existence those situations considered representative of how migrant doctor adapts and integrates professional cultural diversity. We will identify, present and motivate the aspects which determine how to report migrant doctor to fundamental values in meetings with ethnocultural patient."

 

Should brain death certification be hastened in a presumed consent system for organ donation?

Teck Chuan VOO (Presenting Author)
National University of Singapore, Yong Loo Lin School of Medicine, Centre for Biomedical Ethics
Singapore

Shahla SIDDIQUI (Presenting Author)
Khoo Teck Puat Hospital
Singapore

In view of competing conceptions of what it means to be dead, the debate on brain death within transplantation ethics has focused on the normative issue of whether this is the appropriate point for deeming a person dead for the purpose of human organ transplantation. Less has been said on the “technical” aspects of brain death testing and certification, which can be a clinically and ethically challenging affair.  Brain stem death causes a series of pathophysiological changes, such as hypernatremia, which need to be managed to enable brain death certification. As a prelude to organ procurement, brain death certification (BDC) can thus be difficult and circuitous, and subject to variable performance. On the one hand, rapid control of hypernatremia can be the cause of brain death itself. On the other hand, delays in BDC can affect the viability and quality of organs procured, and cause distress to already distraught families.    In this paper, we first discuss the process for BDC, and the moral issues raised by BDC delays, under Singapore’s presumed consent donation system as set by its Human Organ Transplantation Act (HOTA).  Two cases will be used to discuss these issues, with focus on the conflict between families and intensivists due to delays in BCD and lack of knowledge of HOTA. This serves as background for consideration of a protocol to “hasten” or avoid delays in BDC as a form of donor management. We examine autonomy, best interest and family centred care as ethical grounds for this protocol.  We conclude that these concepts support BDC hastening under certain conditions: intensivists' recognition of deceased organ donation as part of their professional responsibility, and the need to inform the public of the intricacies of BDC as part of public education on HOTA.

 

Should incarcerated persons be allowed to access legal assisted death?

Eric WASYLENKO
Health Quality Council of Alberta
Canada

Jurisdictions that have legalized assisted death incorporate clinicians in all or some of the process steps.  In some jurisdictions, the formal health care system coordinates policies, regulations, training and provision.  Even if not explicitly justified, and the while the claim is open to criticism, assisted death is therefore considered to be part of health care in these jurisdictions. Health of, and health care for, incarcerated persons is subject to declared principles promulgated in at least some countries.  Several of those also have legalized assisted death.  But the standards for health care delivery have not generally contemplated assisted death within prison health programs, despite the recognized aging and chronic health challenges of prison populations.  This leaves patients/prisoners subject to potentially discriminatory treatment arising from non-equitable access to a legitimized service that non-incarcerated persons can avail themselves of.  It also leaves health providers at the mercy of idiosyncratic policies, regulations and program provisions when faced with the vexing practical issues and ethical uncertainty at the intersection of prison health and assisted death. Further, incarcerated populations have been shown to have high rates of mental illness and drug addiction, two situations that impact on autonomous choosing precepts that underlie assisted death regulations.  Together with the potentially unique coercive influences inherent in incarceration, assisted death considerations are therefore even more challenging to sort out. This paper will explore: a) potential grounds for supporting differential access to assisted death between incarcerated and non-incarcerated individuals, considering specific vulnerabilities that are exposed by incarceration; b) potential arguments in favor of equitable access; and c) ethics considerations that health personnel might bring to bear in their deliberations with patients who are incarcerated and who may wish to consider assisted death.

 

Pitfalls and Potentials of A New Clinical Ethics Consultation Service: An Experience from Turkey

Murat CIVANER
Uludag University School of Medicine, Department of Medical Ethics
Bursa, Turkey

Although it has been a routine component of healthcare in North America and European countries for a couple of decades, it is almost ‘unborn’ for the other countries. It could be claimed that as of the year 2010 clinical ethics consultation (CEC) was almost absent in Turkey reserving for some sporadic examples. Considering this problem, it was aimed to establish a CEC service in Uludag University Centre for Health, Practice and Research (UU-CHPR), located in Bursa, the fourth most populated city of Turkey. In the first phase, a cross-sectional survey was conducted to determine the quantity and quality of CEC needed. It was found that there was a substantial unmet need for CEC services, and the majority of clinicians stated that they would use it in a variety of situations. In the light of this needs assessment, a Hospital Ethics Committee (HEC), comprised of 11 members, was established in 2012 within the UU-CHPR. It has a directive about its structure and functions, which states its main functions as “Case consultation, Policy review, and Education.” Three years after the establishment of the Committee, a retrospective research on the applications was conducted to examine how the Committee was utilized by the healthcare workers and patients, and what were its effects on guidance on dilemmas and improving healthcare. Two-thirds of the applicants are patients and the issues largely related to right to health, patient rights, and claims of infringement of professional obligations in the context of specific cases. Applications involving CEC request, on the other hand, have a share of only 6.1% in total. Since the Committee members have not undergone any specific training in ethical analysis in general, they are prone to making mistakes in both spotting the existence of ethical problems and determining the justifiable option with due regard to relevant rights and obligations when confronted with a range of options. The members, who are mostly clinicians, may adopt a paternalistic angle, and tend to protect their colleagues. The absence of healthcare workers other than physicians in the Committee as well as patient representatives makes it difficult to express different views and have these views taken into account. Prioritization of legislation in processes of decision making shifts the weight to existing legislation in case of any mismatch between ethics and legislation. In addition to these, perhaps the most important problem source is giving priority to economic considerations in decision-making. In spite of difficulties mentioned, the Committee still has a meaningful role to play in improving healthcare and reducing cases of violation of rights. In this sense, primary objectives should include a) increasing applications, or more correctly utilization of the HEC, b) ensuring continuous improvements in HEC decision making processes, and c) strengthen the implementation of decisions of HEC policy / guideline development. Promoting HEC as a consultancy service by organizing activities to inform clinicians and patients will boost awareness. Besides, it may be rewarding to train clinicians in recognizing and finding solutions to ethical problems in their daily practice. Ensuring participation of all parties into moral deliberations as much as possible could provide more accountability and trust, and therefore increase applications to HEC. There is a need for conducting researches, preferably qualitative ones, in order to gain insight about clinicians’ mind set, expectations and the conditions surrounding them, and to develop initiatives accordingly. In addition, what must be done in order to prevent the emergence of many problems is to promote, in longer term, a culture that integrates CEC into all available services. It can be envisaged at this point that health policies would play a crucial role besides institutional support.

 

Clinical Ethics Consultations at an Academic Hospital in South Africa: Challenges and Opportunities

Keymanthri Moodley
Stellenbosch University
South Africa

A Clinical Ethics Committee (CEC) comprising 11 members was established 8 years ago at an academic public hospital in Cape Town, South Africa with two goals in mind – firstly, to assist clinicians with difficult decision making in the face of ethical dilemmas and second, to develop policy on critical and recurrent dilemmas in the hospital. The CEC meets quarterly for a formal discussion and on an ad hoc basis, at the bedside, for urgent referrals and consults. Where possible the CEC meets with the treating medical team, the patient and family members. Most of the referred cases to date have involved withdrawal of treatment. Other cases have included termination of pregnancy, Jehovah’s Witnesses who refuse blood transfusions, other treatment refusal such as amputation, treatment of foreign nationals, HIV testing & treatment, paediatric consent and the use of off label drugs or innovative therapies in the clinical setting. Policy development on refusal of blood transfusions and withdrawal of treatment have been prioritised over the past 2 years. Since its inception, the CEC has continued to play an important role in the hospital and is being used by various departments with the medical, surgical and neonatal intensive care units (ICUs) calling on the committee most frequently.