Plenary Abstracts

PLENARY ABSTRACT

Knowing When is Enough: A Policy to Promote Ethical Management in End-Stage Organ Failure

Dr. Chin Jing Jih
Tan Tock Seng Hospital
Singapore

Medical futility and the withdrawal/withholding of inappropriate interventions are generally discussed in the context of intensive care unit (ICU). Ironically, the inappropriate imposition of aggressive interventions in general non-ICU settings with the sole intent of achieving survival in patients with limited life expectancy and functional abilities due to advanced end-stage organ failures tends to be less questioned. The goals of care of many such patients are assumed by default to be survival from the acute illness and quantity of life. Consequently, many such patients spend the final 6 to 12 months of their lives mostly in acute hospitals, undergoing multiple rounds of invasive investigations and interventions which incur inevitable trade-offs in their already marginal quality of life, as well as limited lifespan. This paper discusses the ethical and professional imperative to achieve beneficence and best interests for these patients, and a policy-based practice framework to ensure its systematic application in acute hospitals. This will involve consultation with patients and their families, transparent guidelines for decision-making, and adequate opportunity to obtain independent clinical opinion and ethics consultation. The paper will also discuss the critical and practical importance of such structured protocols in helping to bridge and translate ethical principles advocating beneficence for patients at end-of-life with routine and consistent application in acute hospitals where the principal focus tends to be on survival and prolonging life at all cost.

 

Patient Involvement in Big Data Research: How it all fits together

Johannes JM van Delden
Utrecht University
Netherlands

More and more data are being captured. These are health related and personal data which are associated with certain health outcomes. These data collections are boundary-crossing in many ways. Current science is not very well organized to enable this kind of work to happen. Hence the necessity of science in transition. That movement is not about fraudulent scientists, nor about quality versus quantity of research output. It is about the need to reinvent the sociology of science in order to enable it to perform the tasks society has entrusted scientists with.

Care is also in transition. We can see attempts to shift payment models from volume based to value based. The lines between care and research gets more and more blurred and also there is a shift in focus from illness and what the health care system can do to help, towards a focus on health and how patients themselves can work on what constitutes the most important element of health for them. This is where patient involvement comes in. There are a number of reasons for their input in research. First, nothing should be done "about them without them". Also, the purpose of patient engagement is ultimately to improve health (not health care!) by asking the right questions, using the right endpoints, making the right choices during the research project and by implementing the answers in the right way. Lastly we need patient data to scale up to the level of big data that we need if we want to further our understanding of health and disease.

Download presentation slides here

Working Well with Less? Considering Ethical Responses to Diminishing Health Care Budgets

Vikki Entwistle
University of Aberdeen
United Kingdom

Socioeconomic changes of various kinds impact the provision and use of health care in a number of ways. In recent years, some relatively wealthy countries have experienced significant economic downturns. Their health service budgets have been cut, and the resources available to many households have diminished. In this presentation I will illustrate some of the practical and ethical challenges these situations can raise for clinicians. I will start to explore how clinicians should respond when people become less able to bear the costs of professional health services and to engage in personal health care work that might benefit them. I will highlight the importance of discussing and developing shared understandings of what constitutes good (ethical) clinical practice in increasingly constrained circumstances.

Download presentation slides here.  

 

Addressing Stigma: Lessons for Clinical Ethics Committees

Lee See Muah
Ng Teng Fong Hospital
Singapore

Stigma can affect ethical decision making in health care. Stigma can arise as an unintended consequence because of potentially modifiable personal lifestyle factors associated with diseases, such as Diabetes Mellitus. Stigma can influence the way choices are made by patients as well as the way care is delivered by providers. Clinical ethics deliberation should be sensitive to stigma as a contextual feature, impacting on autonomy and justice in care decisions.

 

The Rise and Fall of Clinical Ethics is Taiwan

Daniel Tsai
National Taiwan University College of Medicine
Taiwan

Clinical Ethics committees and ethics consultation have become growing interests and challenge to hospital practice in the past 15 years in Taiwan. Apart from increased social expectations for better ethical standards in health care services, some factors also facilitated such development, which include ethical requirements in the “organs transplantation act” (1987), the “hospice and palliative care act” (2000), and the “patient self-determination act” (2016), as well as the hospital accreditation standards (2002) to require specific mechanisms and functions of medical ethics committees, ethics education and ethics case consultation. The medical ethics committee in the Ministry of Health has once led an important role in promoting medical ethics policy establishment and clinical ethics network development which supported hospital ethics committee operations for about 10 years. However, such support was not properly maintained due to governmental party change and lack of awareness in changing leadership. In this presentation, the speaker will examine the social and cultural factors which are relevant to the development of clinical ethics and ethical consultation in Taiwan, and share the experience and reflection of developing ethics committee and ethics consultation in National Taiwan University Hospital. The speaker will point out that the awareness of and commitment to institutional ethics in leadership is essential to successful development of clinical ethics.

 

How to Sustain (and Grow) your Hospital Ethics Service in a Time of Tight Budgets

Matthew Wynia
University of Colorado’s Center for Bioethics and Humanities
United States

When hospital and health system budgets are tight, which is just about all the time, how can you secure the resources needed to run a robust clinical ethics case consultation service? Three complementary strategies can be helpful. First, improve efficiency and expand your base. Second, learn how to document the value you bring. Third, pursue alternative funding streams. Recognizing that each organization is unique and will need to adapt these strategies to its particular strengths, there are real-world examples of how to use each of these strategies and how to fit them together into a cohesive plan for sustainability and even growth.

Download presentation slides here

 

Changing Concepts of Personhood in Geriatric Oncology

Lalit Krishna
Division of Palliative Medicine, National Cancer Centre
Singapore

How we conceive personhood or “what makes you, you” impacts many elements of our daily lives. Within the confines of oncology the conception of ‘what makes you, you’ has been largely defined by local sociocultural beliefs that maintain the primacy of familial identity and their responsibility in leading care determinations and provisions. Interviews with elderly patients within a local oncology center suggests that younger (<65yrs old) oncology patients perceive themselves as individuals who value their independence and autonomy whilst elderly patients (>65 years old) valued their familial ties and familial identity underlining continued faith in familial determinations. Subsequent vignette studies on end of life decision making revealed most patients accept the primacy of the family in care determinations. Drawing on these 7 large local studies, the impact of familial determinations in end of life care remain dominant and have a significant implication upon how we should educate our clinicians and how we should engage the family in care determinations and even Advanced Care Plans.

Download presentation slides here

 

Ethical and Legal Debates in End of Life Care in Japan

Hitoshi Arima
Yokohama City University Graduate School of Urban Social and Cultural Studies
Japan

Recent public debate on the ethics of terminal care in Japan was triggered by a number of incidents that occurred during the first decades of the 21st century. Important court cases and incidents that were widely reported during these years, and the guidelines that were later published by the government and medical associations, will be introduced in this talk. All of these guidelines allow doctors to withdraw life-sustaining treatments from some patients, and the focus of the debate today is whether we should be content with the present situation or whether we should move on to legalization. The controversy over the legalization will be reviewed, with some emphasis on the concerns voiced from the vulnerable populations (e.g., disability groups).

Download presentation slides here

 

Delivering Primary Palliative Care in the Hospital: A New Pathway to Guide Professional Practice

Nancy Berlinger
The Hastings Center
United States

Palliative care is integral to good outcomes for seriously ill people, yet the limited size of the specialist palliative care workforce constraints access and hampers integration into standard care. Primary palliative care has emerged as a new strategy for meeting palliative care needs that do not require specialist consultation. Key domains of primary palliative care described by Timothy Quill and Amy Abernethy (NEJM 2013) include discussion of prognosis and goals of care, symptom management, and psychosocial support. Professional societies in medicine and nursing in the US have undertaken focused work to consider how to integrate primary palliative care into treatment for seriously ill patients in different settings. The Hastings Center and the Society of Hospital Medicine (SHM), representing hospital-based internists (“hospitalists”) responsible for the care of patients in medical wards, have collaborated to develop a primary palliative care pathway for discussions about prognosis and goals of care from admission through hospitalization and discharge planning. Nancy Berlinger, the co-director of this collaboration, will present the pathway, practice standard, and implementation tools. She will discuss how the values of hospital medicine informed the development of practical guidance for clinicians who are not palliative care specialists, and how the pathway presents clinical ethics consultation as a potential resource for these clinicians. She will offer reflections on the pathway’s potential usefulness to efforts outside the US to improve serious illness care and to engage clinicians beyond palliative care specialists.

 

Limits of Patient Autonomy and Vulnerability in Clinical Innovation

Tamra Lysaght
National University of Singapore
Singapore

Clinical innovation offers the promise of new therapies for patients suffering with chronic and incurable diseases. Innovative therapies are particularly attractive to patients who have not responded to standard of care treatments and/or have exhausted all other options. Yet patient access to innovative treatments is often restricted to the context of clinical research until scientific evidence demonstrates that the therapy is safe and effective for use in patient care. Demands for improved access to innovative therapies have generated a discourse claiming that, as an exercise of personal autonomy, patients have rights to choose treatments that may be beneficial, even if evidence that demonstrates the safety and efficacy of the therapy is lacking. This rights-based discourse is grounded in assertions that claim third parties, such as hospital ethics committees, ought to not interfere with the free choices of patients and clinical decision-making. Drawing on a case example involving autologous hematopoietic stem cell transplantation as an innovative treatment for multiple sclerosis, I scrutinize these arguments to defend the ethical permissibility of interference in contexts where the uncertainty of benefit and potential for harm creates vulnerabilities that undermine patient capacity for self-determination. Set against the backdrop of an emergent global industry that exploits vulnerable patient populations with the provision of unproven stem cell-based therapies in innovative contexts, I argue that patients do not have rights to demand treatments that are unlikely to benefit. Interference in these contexts is ethically defensible and necessary to decrease patient vulnerability and protect patients from unjustified and potentially harmful innovative interventions.

Download presentation slides here.

 

Clinical Ethics Support: A Useful 'Ethical Scaffold' for Innovation in Health

Ainsley Newson
University of Sydney
Australia

Innovative treatments and modes of health service delivery can be sources of clinical, ethical and regulatory uncertainty. Even if a research and development phase has been completed, it is often not until a novel health intervention is scaled up that more certainty can emerge. Further, ethical dilemmas can remain even if aspects such as clinical facts have been resolved. In this paper I will use the examples provided by my co-panellists to reflect on what clinical ethics support (CES) can offer when health innovation is being implemented or contemplated. The talk will comprise three parts: In Part 1, I will synthesise existing debate over the division between research and clinical care and its implications. Innovations can put pressure on this distinction. Part 2 will pick up on this pressure by describing innovative treatment committees and how these could fit with CES as more typically understood. Finally, in Part 3 I will make a wider and potentially more contestable claim: that CES structures are currently under-utilised in the innovation pathway. By their very construction, CES offers an interdisciplinary, knowledge-rich forum for deliberation, partnership and support for those implementing innovation (or receiving it, for that matter) in health. They are adept at handling complex problems, dealing with important contextual features and complex reasoning. Clinical Ethics Support can and should play a greater role in the innovation pathway; offering an ‘ethical scaffold’ for appropriate technology use. That said, I will also deal with some potential counter-claims to this view, including issues in CES scope, pragmatic applicability, expertise and the risk of inappropriate ‘pigeon-holing’.

Download presentation slides here. 

 

Responsible and Irresponsible Medical Innovation with Stem Cells

Jeremy Sugarman
Johns Hopkins University
United States

Medical and surgical innovations have unquestionably contributed greatly to providing important treatments for patients. For example, umbilical cord blood transplantation was largely developed under an innovation pathway and is now considered to be an acceptable treatment option for an array of malignant and non-malignant conditions. However, innovations may pose substantial risks to individual patients who are among the first to receive them. Moreover, populations of patients could be harmed if innovations are not promptly and properly evaluated. Here, a paradigmatic example is the use of autologous bone marrow transplantation and high dose chemotherapy for breast cancer, which was delivered to thousands of women before data from randomized clinical trials demonstrated that this burdensome treatment was not beneficial. In order to help minimize such ethical concerns, the International Society for Stem Cell Research has offered guidelines for stem cell-based medical innovation. Under these guidelines, innovation in a small number of patients is permissible provided that there is: 1) a written plan; 2) peer-review and approval; 3) the patient is not eligible for a trial; 4) institution is accountable; 4) personnel are qualified; 5) informed consent; 6) an action plan for adverse events; 7) resources for complications; and 8) a commitment to contribute to generalizable knowledge. While it is unclear how well this particular approach to governance of medical innovation works in practice, a formalized approach to medical innovation is warranted.

Download presentation slides here. 

 

International Migration of Human Resources for Health: Clinical Consequences and International Responsibilities

Leonardo D. de Castro
University of the Philippines
Philippines

This presentation offers an assessment of the roots and impact of HRH migration across countries based on statistical data and selected case studies. It also seeks to explain why analyses rooted in the brain drain paradigm fail to deal with the injustices associated with HRH migration and why a reduction of the ethical issues to economic considerations ignores significant social responsibilities as well as other commitments relating to the noble ends of medicine and health care. In the end, the presentation points out that while the impact of HRH migration is something that needs to be addressed by policy makers nationally and across national boundaries, it is also something that must be seen as an urgent concern to be addressed by health care providers directly in the clinics where the consequences are experienced.

Download presentation slides here. 

 

From the Abstract to the Real: Through the Lens of Living Related Kidney Donation in Pakistan

Farhat Moazam
Centre of Biomedical Ethics and Culture (CBEC), Sindh Institute of Urology and Transplantation
Pakistan

In the initial years, the donation of an organ by one person for transplantation into another aroused awe and wonder but this field is now routinized, merely one surgical procedure among many others. The two common motifs that have come to define ethical organ donation globally are “altruism” (selfless act without expectation of any personal gain) and the “gift of life” (a supererogatory act which is praiseworthy but optional). In their influential book, Principles of Biomedical Ethics, philosophers Tom Beauchamp and James Childress present these concepts as universally applicable and believe that ethical organ donation rests on autonomous decisions of individuals without “emotional, social, and family pressures.” My presentation is based on ethnographic research in a Pakistani institution involving live, related kidney donors and physicians involved in their care. I will argue providing examples that within family centered societies in which members are profoundly interdependent socioeconomically and draw moral guidance from religion, considering these motives and motifs as universal is a reductionist approach to the ethical complexity of human lives and illnesses. Moreover, within the context of countries with large burden of kidney disease and insufficient/inaccessible health systems, it can be shortsighted to interpret the intricate field of organ transplantation as merely an encounter between a patient and a physician.

 

 

Cultural Competence and Its Ethical Implications for Cross-Border Healthcare

Ilhan Ilkilic
Istanbul University Faculty of Medicine
Istanbul

Worldwide migration has led to a situation where intercultural healthcare situations have become a regular part of medical everyday practice in many countries. Treating patients with a migration background raises a number of ethical issues in medical routine. An adequate provision of healthcare services, including an appropriate solution to these ethical problems, requires cultural competence. The concept of cultural competence includes skills and abilities facilitating the realization of potential conflicts and the understanding of their background in an intercultural context, allowing for an ethically appropriate action orientation as required by the situation. These capabilities include cultural knowledge, culturally sensitive communication, critical tolerance, and avoidance of stereotyping. This talk will describe and critically discuss the importance, ethical implications, and limitations of these abilities in the context of a multicultural healthcare service.

Download presentation slides here.