“I want to do the right thing. She was a wonderful mother, and deserves only that.”
This common refrain comes from children of aged, ill parents. Families struggle with decisions, confronting the inevitable while providing parents with love and care. Modern medicine often offers endless treatments—but illnesses eventually progress and the focus must ultimately shift to end-of-life care. Moments that Matter: Cases in Ethical Eldercare reflects Dr. Gordon’s extensive experience with families struggling with poignant and difficult decisions.
“Caring effectively and lovingly for the elders in our families can present daunting dilemmas. Moments that Matter: Cases in Ethical Eldercare provides invaluable information and insights for all concerned. Dr. Michael Gordon has given us a timely and timeless gift with this book.”
—Steven R. Sabat, Ph.D., Professor of Psychology, Georgetown University
“Dr. Gordon has written a thoughtful and indispensible guide to aid families facing difficult choices in caring for aging family members. There is no other single resource that so deftly and expertly draws together the necessary elements to navigate this phase of the life course.”
—Ross Upshur, M.D., Director, Joint Centre for Bioethics, University of Toronto
“Drawing on a rich supply of vignettes from his vast clinical experience, Dr. Michael Gordon brings good advice and trenchant analysis to families caring for older relatives. Moments that Matter: Cases in Ethical Eldercare is informative, practical, and compassionate—everything that struggling caregivers need.”
—Muriel R. Gillick, M.D., Professor of Population Medicine, Harvard Medical School
Palliative Care: Achieving the Goals of Comfort and Dignity End-of-life decisions are always difficult, and may result in conflicts between healthcare professionals and family members. Even when treatment goals have been agreed to and palliative care is decided upon, problems can occur. Recently, a family member spoke to me about her mother who was in a nursing home and for whom palliative care had been chosen. The daughter indicated concern about the difficulties the family had in communicating with their mother’s attending physician. While they had previously enjoyed a good relationship with the doctor, the family believed that their requests regarding their mother’s palliative care and end-of-life needs were being ignored. A resolution was eventually found. The daughter felt that the issue had to be addressed so that, other families would have a smoother and more receptive response when transitioning from standard treatment to palliative care. During a subsequent teaching seminar a family practice resident, presenting the same case said, “It seems that the family had strong feelings about the kind of care they believed they should be providing their mother based on her earlier communications with them. They believed that, irrespective of the cause of her symptoms, she should receive pain management because she was suffering. They were unhappy that she was receiving minimal pain medication and [receiving] nothing that had substantial opiate effectiveness.” Evidently, the primary care physician wanted to know the cause of the pain and do some imaging investigations. The doctor believed that palliative care steps should not be taken until a definite source of the pain was evident. A geriatric medicine consultant who saw the patient with the resident recommended gradually increasing morphine doses. The attending physician was reluctant to comply because of the unknown source of the pain. The following questions were probed by the ethics seminar attendees: • What is the basis by which end-of-life decisions are made? • What does one do if members of the healthcare staff are uncomfortable implementing treatment with opiates because of the fear that it could be misconstrued as causing death and become the basis of regulatory or legal action? • A broader question is, “What about the feelings of the family who believe that their loved one is not getting the necessary pain management and is suffering in their final days? With the case presented and questions posed, the seminar attendees discussed the role and responsibility of the surrogate in interpreting the wishes of the patient; of the physician in responding to the wishes; and, the belief that providing pain management medications, such as morphine, marginally hastens death and may be seen as euthanasia. The Patient’s Perspective There must be respect for patient autonomy, either directly when possible, or through a surrogate if the patient cannot communicate. Healthcare professionals cannot easily dismiss the surrogate’s expression of the patient’s wishes. It is unfortunate that advance directives/living wills usually only confirm who the surrogate is and may deal with some major interventions, such as tube feeding and CPR. This means that the surrogate often has to make decisions about end-of-life care issues, such as pain management and symptom treatment, based on the surrogate’s knowledge of the patient, the patient’s values and belief system, and prior conversations about death and dying. I recommend that family members have frank conversations with their loved ones about what their wishes might be in the face of a serious illness for which little hope of recovery exists. The Physician’s Perspective It behooves the physician, when caring for a patient who has a surrogate, to ask in a supportive and sensitive way why the surrogate is making a specific decision. In the situation mentioned above, the children were adamant that their mother had clearly told them she did not want any more tests and treatments. She felt like she had lived a full life wanted to be allowed to die. She also told them that if she had pain, she wanted it treated. The family understood that the cause of the painful symptoms were not clear, but they wanted to honor their mother’s request and have the pain treated regardless of whether or not the cause was identifiable and treatable. The children wanted the focus of the care to be on symptom and pain control so that their mother’s last days were peaceful and free of suffering. If the attending physician had understood the reason behind the decision, it might have limited the tension from the very beginning. The next issue that needs to be examined through the lens of the physician is the use of narcotics in palliative care. Many physicians new to the principles and practices of palliative and terminal care struggle to reconcile administering narcotic medications in such a way as to meet symptom control requirements without appearing to hasten death. This is a concern because larger doses may be given for end-of-life pain management than are normally used for other types of pain. Many physicians fear the use of narcotics and especially the legal ramifications of not administering the narcotics correctly. North America has stringent regulations regarding the use of these medications. I encourage physicians to gain all the knowledge they can regarding including opiate and other symptom-management drug therapies available in end-of-life and palliative care. Some physicians have the luxury of transferring patients to physicians and facilities trained in palliative care. However, for many other physicians this is not an option, and so they must be proactive in seeking information. As to the issue about narcotic use marginally hastening death, there has been much discussion and research that challenges this belief. An article published in the December 2006 issue of the Journal of Pain and Symptom Management from the National Hospice and Palliative Care Organization challenged and appears to have dispelled the belief that the administration of opiates (including morphine) hastens death under the usual circumstances of its use in the palliative/terminal patient population. The study suggested that the timing of death among patients with advanced illness involves a complex interplay of variables, and that effective opiate use actually poses little risk of hastened death. Stephen Conner, co-author of the study, wrote, “Most clinicians understand the value of using opiates to relieve suffering at the end-of-life, but [their] fear of hastening the death of seriously ill persons contributes to unnecessary suffering. This study reassures clinicians that their effective use of opiates in the seriously ill will not hasten death and will lead to better quality care.” Key Points to Remember • Palliative care is a philosophy of care. While this type of care can take place in a specific facility or unit, it should be provided anywhere in the care system. • The goal of palliative care is the control of pain and other symptoms in patients in the terminal stages of their lives. • Once palliative care is agreed upon, acute interventions should not be considered and should be deemed unsuitable within the context of meeting end-of-life needs of those whose illnesses are no longer responsive to such interventions. • The goal of palliative care is to reduce suffering. Strong analgesics may be used, which in turn clouds consciousness as part of the process of achieving comfort. • Family members are encouraged to discuss with healthcare staff what to expect when their loved one is receiving palliative care, and what symptoms and issues might occur as their loved one approaches their final days.
Michael Gordon M.D., MSc, FRCPC is a professor, ethicist, and one of Canada's best known geriatricians. His work to advance the understanding of aging and end-of-life care is valued by both public and professional audiences. Dr. Gordon explores and addresses the difficult questions of caring for the elderly.