A Summer of Ethics: 3 Cases Presenting 3 Ethical Challenges in Medicine

In modern health care facilities, medical ethics are embedded into the complexities of the clinical decision-making process. It is quite common and is considered a normal part of contemporary health care for the professional staff, whose goal is to achieve high-quality health care, to face ethical conundrums. Achieving an ethically accepted resolution is not always easy; it is important to remember that rather than the outcome being the measure of success, it is the robust process and deliberative undertaking that often is the measure of success.

Until the 1970s, medical ethics in most cases was a fairly loose collection of beliefs and activities followed by physicians, based on an informal reservoir of religious, philosophical, and legal practices that had evolved over the centuries. A major component of Western medical ethics was the impact of the Hippocratic oath, which although ancient in its roots, did set the concept that physicians are not like others in society and have duties and obligations to other physicians, students of medicine, and those who are cared for by physicians. Its focus on the prevention of harm was important, although from the perspective of contemporary medical ethics, it would be considered too limited and narrow in scope.

Since the 1970s and the introduction of so-called principlism as the basis of medical ethics’ formulation and deliberation, a major reconfiguration of the scope of medical ethics in the practice of medicine has occurred.¹ As an outcome, almost all health care facilities now have developed organizational structures in order to meet the regulatory requirements of medical practice and address the expectations of patients and their families that doctors “do the right thing” in their practice of increasingly complex and demanding medicine.

A Summer of Ethics

The phone message asked whether I could cover the institution’s ethics program for the summer. As program codirector, I did not have too many options, since my colleague had decided to go abroad for the year, and the previously hired locum tenens replacement could not come back until the fall. So I agreed.

For the first few weeks, not much happened. When my colleague called from overseas and asked how things were going, perhaps expressing a modicum of guilt for having left me to unexpectedly carry the ethics ball for the summer, I responded, “Very quiet.” And then, the requests started coming in, each one a lesson in ethics on its own.

Case 1

The first case, like many such requests, crossed the interface of ethics and law.

A patient being transferred to our multilevel academic geriatric facility in Toronto from an acute-care facility had sustained a stroke and was unable to speak, but she was awake and responsive and could indicate preferences by shaking her head “yes” or “no.” She had only one family member, a very estranged son who refused to be involved in any way with his mother. The only person who came forward was a friend of 10 years to whom the woman rented part of her home. According to the friend, they had become friends but adamantly indicated “nothing more.” Still, he said that he cared very much for her, that she had been very kind to him during a difficult personal time, and that he felt very beholden to her. When he discovered that there was no one to make decisions on her behalf, he put his name forward.

Our staff, who were not as familiar as they might have been with Ontario’s Health Care Consent Act (HCCA), initially did not realize that it was perfectly legal for a nonfamily member to become a person’s official substitute decision-maker (SDM; often referred to in the United States as a health care proxy) even if the person had a family, if those family members refused to take on the role.² Such arrangements for SDMs are similar across North America, with variations among states and provinces. For example, the regulations of New York State³ mirror Ontario’s concept of the public guardian and trustee, with judicial relief being the source of resolution.

Ontario’s Office of the Public Guardian and Trustee, to whom the hospital referred the situation, indicated no problem with such an arrangement. When the patient arrived at our continuing care unit, we had to provide documentation confirming the situation for our legal department. In addition, the unit’s social worker and I, in my role as ethics consultant, were requested to confirm that the SDM was willing to undertake the decision-making, and to approach the patient, even in her noncommunicative state, to verify as best we could that she did not want her son involved in her care. When asked that question, she shook her head, and when presented with the friend, acknowledged that he was someone she wanted in her presence.

A question also arose about her feeding tube, which had been inserted before she came to our institution. The SDM indicated that when the tube had been inserted, he felt that there had been a lot of pressure for him to agree to it, even though he felt that she would not have chosen such a treatment (despite not having discussed it with her specifically), and that her philosophy was always one of “letting nature takes its course.”

After discussion among the social worker, a speech language pathologist, and me, with the input of nursing, it was decided to try to get an indication from the patient herself about whether she wanted to continue the tube feedings. She was not able to indicate her preference, but in view of the SDM’s position as representing her previously expressed wishes, the decision was made to stop the tube feedings. In addition, attempts were made to offer her small amounts of food such as ice cream, which the SDM said that she always liked, but each time, the woman turned her head away.

Eventually, it was decided that she was in the palliative mode of care, with the focus on comfort and quality of remaining life. She was given simple analgesics for apparent episodes of nonspecific pain and small doses of calming medications for episodes of non-pain-related agitation.

After 2 weeks, the woman died, having received comfort-focused nursing care with skin care and mouth care to avoid the sensation of thirst. Her death was inevitable, and we were able to support the SDM, who clearly cared very much for his friend; when her death came, he could feel that he had done the right thing—which is the goal of ethical care.

Case 2

A second ethics case that summer was more complicated, involving ethics and religious values. In this case it was Jewish values, but it could just as easily have been Muslim or Christian values.⁴

An older woman living in a nursing home had been on dialysis for 4 years for chronic renal failure, with no prospect for renal transplantation. While talking to the unit’s social worker, the woman indicated that she was “getting tired” of the whole routine and wondered out loud if it would not be better if she could just stop and be allowed to die. Physicians involved in dialysis programs have a long experience with patients choosing to stop dialysis at some time and die of their progressive renal failure. In most cases, a patient can be made very comfortable in this palliative stage of illness; in the absence of life-maintaining dialysis, death usually occurs within some weeks of cessation, often with little in the way of discomfort or suffering.

When the social worker pursued the musing, the patient said she would not consider such a move without an opinion from a rabbi, since she would not do anything that would contravene Jewish law, known in Hebrew as Halakhah. The case was brought before a rabbi who was not very experienced in some of the nuances of interpretation of Halakhah; he took the view was that she was obligated to continue the dialysis because it was “saving her life”—a paramount value in the Jewish tradition—and that failure to continue would present a serious abrogation of her duties. She chose to drop the request, not only to the concern of the social worker but also of the attending physician who wondered about the halakhic interpretation and the implications of the HCCA, which allows a person to discontinue even lifesaving treatment.

I was asked for my understanding of the case. From the perspective of my ethics role and from my own understanding of Halakhah (although not an expert, I have studied Halakhah and have access to experts for their interpretation), the woman was having many adverse events from her dialysis but, according to her nephrologist, she was not yet in a state where it could not be continued, albeit with some difficulties and challenges.

I was aware that the same challenges and religious concerns occur in Islam and Christianity. The prominent Terri Schiavo case, in which the U.S. courts eventually decided that her legally appointed SDM husband could withdraw her feeding tube, had attracted a great deal of media attention, including not only political opinions, but also the Pope having promoted the continuation of artificial nutrition and hydration through a feeding tube. The more recent case of Hassan Rasouli in Canada involved a Muslim patient whose wife obtained a ruling through the Supreme Court of Canada preventing his physicians from withdrawing life-maintaining treatment and transferring him to palliative care. Although the focus of the decision was not specifically on religious values, those who supported the patient’s right to continue with the treatment felt it was a victory for religious freedom of expression.

I sought advice from halakhic scholars, whose subtle interpretation of the law included a way for the woman to decide to forgo further treatment if she wished without abrogating her adherence to Jewish law. Still, despite knowing that she could forgo dialysis without conflicting with her Jewish values, she decided to continue treatment and would consider the alternative only if her situation progressed. It was a relief for her to know that she could make the decision, which helped her to not make the decision. 

This psychological dynamic is seen in jurisdictions that allow for assistance in dying. Quite often, when a person finally gets permission to receive assistance in dying, they choose to live, knowing that they can now take another course if they so wish; the issue becomes a matter of their personal choice and control.

Case 3

The third challenging case that summer is very similar to a recent case in British Columbia,⁵ in which a woman’s daughter wished to fulfill her interpretation of her mother’s advance directive that she did not want any artificial feeding were she no longer able to make such decisions or to have late-stage dementia. With that situation apparently achieved, the daughter consistently opposed the actions of nurses who offered her mother food on a spoon, which she took willingly with no indication of rejection. When the mother was not interested in eating anything, she turned her head away. There was no evidence that the nurses in any way had forced the woman to eat; they had merely offered food as part of the accepted and required basics of care.⁶ This approach of comfort feeding has become increasingly accepted in long-term care as an alternative to artificial nutrition and hydration. The daughter also claims that drugs are being used to “extend” her mother’s life. But it has been made clear that the few medications her mother is receiving are solely for symptomatic and comfort care, a withdrawal of which would be an abrogation of health care and institutional duty.

The daughter in the British Columbia case was so opposed to the position of the nursing home that she went to the media, then went to the regulatory bodies, and ultimately took legal action to bring pressure to the unit’s administration to cease the practice.⁷ She did not succeed in the courts.⁷ In our case, the daughter who objected to simple food being offered to her mother did not go through the legal system but nonetheless was not happy with the position taken by the health care professionals, who felt that they were obligated to offer food as long as the patient willingly took it.

A number of issues about the complex legalities and professional obligations and duties of nurses and other health care professionals came out in the final British Columbia ruling, which we explained to the daughter in our case. First, feeding in a nonartificial way (that is, without a feeding tube) is not considered a medical activity and therefore lies outside the purview of a SDM according to most provincial legislations, including Ontario’s HCCA. Since it is not a medical act but rather part of normal personal care, such as providing mouth care, skin care, and continence care, it becomes a reflection of the professional standards of each health care professional and the institution’s own regulations to determine what it is their duty to provide.

In a previous case at our facility, a patient had written a very detailed advance directive many years before being admitted in a minimally conscious state, with a feeding tube already in place, as agreed to by her children. After admission, the advance directive, about which the children claim to have had neither knowledge of nor conversation about, was produced. It stated a clear opposition to artificial nutrition and hydration and was executed by a competent lawyer. The children objected on religious grounds; despite the expectations of the lawyers acting on behalf of the patient and our facility, a Superior Court ruling came down in favor of the family. The result was permanent artificial nutrition and hydration for a patient who had tried to prevent such an occurrence from happening.

The irony is that the degree of passion each family expressed for their interpretation of instructions, and how the legal systems dealt with each one—using nuances of law and interpretation of health care consent to come to their decisions.⁸

It is hoped that in this case, which at the time of writing had not been resolved, good communication will allay the concerns of the daughter and promote the best of symptomatic and palliative care principles for the mother, who ultimately deserves the best of comfort and quality; if that includes her occasionally taking something by mouth, however limited, it should not be denied.

Michael Gordon, MD, MSc, is the medical program director of palliative care at Baycrest Geriatric Health Care System in Toronto, and a professor of Medicine at the University of Toronto, Ontario, Canada.

References:

1. Gillon R. Medical ethics: four principles plus attention to scope. BMJ. 1994;309(6948):184-188.
2. Health Care Consent Act, 1996. Statutes of Ontario 1996, chapter 2, schedule A. http://www.ontario.ca/laws/statute/96h02/v13. Accessed February 2, 2016.
3. NY PBH Article 29-C § 2984. Provider’s obligations.
4. Clarfield AM, Gordon M, Markwell H, Alibhai SMH. Ethical issues in end-of-life geriatric care: the approach of three monotheistic religions—Judaism, Catholicism, and Islam. J Am Geriatr Soc. 2003;51(8):1149-1154.
5. Supreme Court sides with nursing home in spoon feeding case. AdvocateDaily.com. http://www.advocatedaily.com/supreme-court-sides-with-nursing-home-in-spoon-feeding-case.html. Accessed February 2, 2016.
6. Cantor MD, Kayser-Jones J, Finucane TE. To force feed the patient with dementia or not to feed: preferences, evidence base, and regulation. Ann Longterm Care. 2002;10(8).
7. Fayerman P. Euthanasia: BC Court of Appeal rejects family’s bid to let their mother die: read decision here. Vancouver Sun. March 13, 2015. http://blogs.vancouversun.com/2015/03/03/euthenasia-bc-court-of-appeal-rejects-familys-bid-to-let-their-mother-die-read-decision-here/. Accessed February 2, 2016.
8. Gordon M. Guest article: who can you trust with your most important end-of-life decisions: lessons from the Ontario Court of Appeal? Whaley Estate Litigation Web site. http://whaleyestatelitigation.com/blog/2013/12/guest-article-who-can-you-trust-with-your-most-important-end-of-life-decisions-lessons-from-the-ontario-court-of-appeal/. Published December 20, 2013. Accessed February 2, 2016.