By Dr. Michael Gordon
Editor’s Note: The following is an edited excerpt from the manuscript of the book: Moments that Matter: Cases in Ethical Eldercare, A Guide for Family Members. We thank Dr. Gordon for sharing the information with us.
End-of-life decisions are always difficult, and often result in conflicts between healthcare professionals and family members. Even when the goals of treatment have been agreed to and palliative care is decided upon, problems can occur.
A recent experience highlighted these difficulties. A family member wanted to talk to me about her mother who was in a nursing home and for whom palliative care had been decided. The daughter said she was concerned about the recent 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 didn’t believe that their requests regarding their mother’s palliative care and end-of-life needs were being honored. After much discussion a resolution was found, but the daughter felt that the issue had to be addressed with me so that, in the future, other families would have a smoother and more receptive response when transitioning from standard treatment to palliative care.
Not too long afterward, I attended an ethics seminar where a young physician presented a similar case. The family practice resident, who was in her first year of postgraduate training, said she was consulting at a nursing home where there was a difference in opinion between providing palliative care for a patient, including pain management, and in performing tests to identify the cause of the woman’s pain and then treating it.
The resident 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 have some tests run. The doctor was of the opinion that palliative care steps should not be taken until the source of the pain was clear.
The geriatric medicine consultant, to whom the young resident was reporting, requested a pain management evaluation. The resident continued, “When a recommendation for graded morphine doses was made, the attending physician was reluctant to comply because of the unknown source of the pain.” Thus, the following questions were given to 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 treatments with opiates because of the fear that it could be misconstrued as causing death and become the basis of regulatory and/or legal action?
The broader question, of course, 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 asked, the seminar attendees discussed the role and responsibility of the surrogate in interpreting the wishes of the patient; the role and responsibility of the physician in responding to the wishes; and, the interpretation that providing pain management medications, such as morphine, marginally hastens death and may be seen as euthanasia. The rest of this article looks at each issue in more depth.
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 question 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 off 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 if conditions result in a serious illness for which little hope of recovery exists, or should functioning become compromised.
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. For example, in the situation I mentioned at the beginning of the article, 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 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 would 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 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. Considering that North America has stringent regulations regarding the use of these medications, the fear is understandable but avoidable. I encourage physicians to gain all the knowledge they can regarding analgesic use, including opiate and other symptom-management drug therapies available in end-of-life and palliative care. Some physicians have the luxury of transferring patients at this stage 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 belief that opiates do hasten death has previously led healthcare staff to under-administer pain-reducing opiates. Thus, patients end up suffering up until their final moments. 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. We all want to be kept comfortable and pain free at the end of our lives.”
Key Points to Remember
- Palliative care is a philosophy of care—not a location. 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.
- As the goal of palliative care is to reduce suffering, it is implied that strong analgesics may be used, which in turn cloud consciousness as part of the process of achieving comfort.
- Family members are encouraged to discuss with healthcare staff what to expect once their loved one is receiving palliative care, and what symptoms and issues might come up as their loved one approaches their final days.
Conclusion
It is the ethical and professional responsibility of physicians to ensure that they have the knowledge and commitment necessary to respond to the end-of-life pain management needs of our patients.
About the Author:
Dr. Michael Gordon is the medical program director of palliative care for the Baycrest Geriatric Health Care System, and a professor of medicine at the University of Toronto.
|
|
|
|
