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Conflicting Demands of Family at the End of Life and Challenges for the Palliative Care Team
Affiliations: 1Palliative Care, Baycrest Geriatric Healthcare System, Toronto, Ontario, Canada 2Department of Medicine, Division of Geriatric Medicine, University of Toronto, Toronto, Ontario, Canada 3Department of Family and Community Medicine, Division of Palliative Care, University of Toronto, Ontario, Canada
Abstract: Once a patient and his or her substitute decision-makers have accepted a palliative care plan, healthcare professionals often go to great efforts to prepare individuals and their families for the last period of their lives with the primary focus on compassion and comfort. Even when there is a shared understanding of the limitations of any current treatments at the end of life, public sentiment appears to tend towards the extension of life under any/all circumstances. Conflict arises when patients and their families seem to accept the palliative care philosophy in principal, yet demand or refuse interventions in a way that is contrary to the basic principles of comfort care. As illustrated in the case presented here, tensions can easily arise between patients and their families when requests for comfort measures at the end of life require interventions that clash with the personal philosophies of either the patient or substitute decision-maker.
Key words: Palliative care, care planning, quality of life, quality of care.
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Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.
—Dylan Thomas
Given the vast efforts across most Western countries to ensure that end-of-life care follow principles of comfort care, it can come as somewhat of a shock to many palliative care professionals that, rather than acceding to these principles, patients and their families often request medical interventions that are counterproductive to the palliative care process. At worst, such interventions prolong the process of dying rather than prolonging life, and the implications can be extended or exaggerated suffering for the patient.
In this article, we present the case of a patient receiving palliative care whose two daughters disagreed with each other about his medical treatment in his final days of life. The open arguments created great distress and tension among the family, patient, and healthcare team providing his care. The case highlights the responsibility of palliative care teams to facilitate open communication early and often among all stakeholders in end-of-life decision-making. The case is followed by a brief discussion of the numerous cultural and emotional factors affecting the decision to pursue symptomatic relief, rather than life-prolonging measures, in the context of terminal illness.
Case Report
The patient was transferred from an oncology center to a palliative care unit (PCU) for end-of-life care. It was understood that in a consultation before the patient’s transfer the nature of palliative care had been explained to the patient, who was still quite capable of expressing his wishes, and to his two devoted daughters, one of whom had the official proxy designation. The patient was diagnosed with metastatic sarcoma with pulmonary metastasis and severe infiltration of his pulmonary cavity. He had experienced a rapid physical decline over the previous few days and numerous symptoms had escalated. Most distressing to the patient was his shortness of breath and chest congestion, which he rated as 10/10 and 9/10, respectively, on the Edmonton Symptom Assessment Score scale.1 The patient’s Palliative Performance Scale score on admission was 20% and based on that score, his recent rate of decline, and his current physical state, the attending physician felt that his likelihood of survival was measured at most in days.2 After reviewing the goals of palliative symptom management with the patient and his daughters, the physician was taken aback when one of the daughters (the daughter without official substitute decision-maker [or proxy] status) began to challenge the physician’s choice of medication and indicated that she did not want any potent opiates given because she did not want her father to lose his ability to communicate.
The proxy daughter disagreed with her sister and the two continued their verbal disagreement in the presence of their father, much to the disquiet of the attending physician and associated healthcare staff. To help ease the altercation, the physician noted that the patient was still capable of making decisions and asked the patient in front of his daughters what he wanted to do. The patient stated clearly that he could not breathe and that he wanted his pain relieved and his shortness of breath better managed. The patient also verbally acknowledged that, “I am dying, help me.” The physician expressed to the daughters that her obligation and duty as a medical professional was to treat their father, and that she therefore would be doing so. When the daughters left the room, the physician also cautioned them against having such disagreements in front of their father; rather, they should make every effort to ensure their father’s final memories would not be of family dysfunction or conflict.
The patient and his daughters were able to have a conversation with the attending physician about how best to achieve the patient’s goals of care, which were for greater physical comfort in his last days. Both nonpharmacologic and pharmacologic options were presented for the relief of his severe shortness of breath and congestion. As part of the patient’s management strategy and after having discussed his alternatives, the patient with the support of his proxy verbally consented to start scheduled opioids and anticholinergics. Once again, the nonproxy daughter challenged the use of medication. At this point, the attending physician reminded the daughter that her father’s death was imminent “with or without the use of medications for symptom control” and described what she could expect over the ensuing hours in either scenario. It was made clear that the degree of suffering her father would experience in the last period of his life would be very much dependent upon the decision to use appropriate analgesics and other therapies. The concept of accepting some risk for appropriate symptom control at the end of life was further discussed, as well as methods for selecting and titrating medications in order to minimize that risk as much as possible. The patient was able to direct his care and felt relief within a short time after the appropriate combination of medications was initiated.
This scenario of open disagreement unfortunately occurred again on the same day, and the attending physician again counseled the daughters about trying to avoid open conflicts in front of their father. The doctor struggled to provide the care necessary to ameliorate the patient’s suffering, which she succeeded to do. But the majority of the time the nonproxy daughter hovered over, sometimes taking an adversarial stance towards the physician and the PCU staff.
Following the death of the patient, which occurred within 12 hours of the initial disagreement, the nonproxy daughter requested a meeting with the staff. She arrived with a range of complaints about her father’s final hours and a subliminal threat that she would sue the organization for deficiencies in their care and processes.
Discussion
The case described above is just one of several encountered by our PCU staff during the previous year in which family members chose complex medical interventions despite having had the philosophies of palliative care and end-of-life care explained to them prior to admission. Even when there was an apparent agreement about the philosophy of palliative care, family members went on to demand medical and associated interventions that were contrary to its espoused principles of care with the primary focus on symptom management, relief of anguish and suffering, and psychosocial support for the patient and families.
According to a recent study conducted by the Pew Research Center, data in 2013 show that two-thirds (66%) of Americans felt there were at least some situations in which doctors and nurses should allow a patient to die, whereas nearly one-third (31%) felt that medical professionals always should do everything possible to save a patient’s life, in all circumstances.3 These results represent a growing trend over the past 25 years; the number of people who share the view of extending life under any circumstances has increased from 15% in 1990.3
The Diverse Landscape of End-of-Life Care
Several factors can affect the preferences of individuals and family members who may be the proxy care decision-makers. In multicultural societies that incorporate people of many religious and ethnic backgrounds, there can be vast differences of opinion about the end of life, perceptions of pain and suffering, and beliefs about death. The study by the Pew Research Center found that personal preferences about end-of-life care were strongly related to religious affiliation, race, and ethnicity.3 For example, the majority of white mainline Protestants (72%), Catholics (65%), and evangelical Protestants (62%) reported that they would halt their medical treatment if they had an incurable disease and were suffering a great deal of pain. By contrast, 61% of black Protestants and 57% of Hispanic Catholics said that, under those same circumstances, they would ask their doctors to do everything possible to save their lives. Overall, blacks and Hispanics were less likely than whites to say they would halt medical treatment under these circumstances.3
In some cultures, talking about death and dying is not socially acceptable, is considered disrespectful, or is thought to cause bad luck or feelings of hopelessness, and in fact in many cultures the prognosis is kept a secret from the dying family member.4 Patients who have emigrated from countries in which the physicians make all healthcare decisions may be uncomfortable with being asked to take an active role in choosing treatments or deciding when to stop treatments.4 Alternatively, whereas concepts of individual autonomy and the right to direct one’s life and decisions about death and dying are commonplace among Americans, collective decision-making about death is the norm in many other cultures.4
Culture can also affect the way an individual responds to or perceives pain. For instance, pain might be seen as a positive sign that the body is fighting the illness, or it could be perceived as a test of one’s religious faith or personal strength or integrity. In such contexts, the acceptance of medication to reduce pain might be perceived by the patient and his/her family as a sign of weakness.4
A range of studies have examined this dynamic in an effort to understand the relevance of cultural diversity to how we approach death and dying, and have found that the greatest barrier between the healthcare provider and the patient or family during the end of life was communication.4-7 Lopez8 concluded that providers in palliative and end-of-life care settings need to have an understanding of the following concepts in order to exercise cultural competency in the facilitation of end-of-life care:
• The patient’s and his/her family’s perspectives on death and dying
• The patient’s and his/her family’s perspectives on hospice and palliative care services
• The patient’s and his/her family’s acceptance of Western healthcare practices—as well as their use or nonuse of alternative healthcare practices
• The role of spiritual or religious belief and practice in the lives of the patient and his/her family
• The role of the family to that patient and his/her family members—including having a firm understanding of which individuals are considered a part of the family
• How the patient and family communicate with each other and with others (eg, is an interpreter needed? Are certain words unacceptable when discussing illness or death?)
• The patient’s role in problem-solving and decision-making
How these disparate values might intertwine with other demographic factors is unknown. For instance, it is unclear whether an individual’s choices merely reflect the psychosocial and religious makeup of the population he/she identifies with, or whether they also reflect the socioeconomic structure of the jurisdiction.4,9,10 Individual decisions about end-of-life measures might reflect the overarching values of the healthcare system that are dominant in that person’s everyday life or in their general society. For instance, individuals residing in communities with a publicly funded healthcare system might be less suspicious of end-of-life decisions that focus on comfort measures, than would an individual whose healthcare system is for-profit and therefore might be advocating for measures that are financially driven. Perhaps it is a change in perspective, when suddenly faced with the options of life and death, that drives the belief that all that can be done should be done. Or perhaps it is due to a excessive faith in the power of modern medicine.10,11
Lessons Learned From Our Case Patient:What Could Have Been Done Differently?
The day following the death of the patient, the attending physician communicated with the transferring team in a debriefing. It was noted that verbal disagreements between the two daughters had occurred before transfer, however not to the extent of the altercations noted at the PCU on the day of admission. The transferring oncologist had counseled the patient and both daughters about the noncurative nature of his metastatic sarcoma, its recent progression, and end-of-life care in general. However, when the patient suffered a sudden functional decline prior to admission to the PCU, the family was clearly in conflict. Discussion about the potential for an unanticipated or sudden functional decline as a sentinel event was missing from the initial consultation about prognosis. So, although the outcome of death was understood by the patient and his daughters, not having addressed the possibility of sudden decline contributed to the daughters’ distress, as they had been left under the impression of there being “more time.”12
This case also highlights how a dying patient in his last hours was able to direct his care, even while in distress. This patient, in a credible and consistent way, had made his wishes known to his daughters, both of whom had erroneously assumed that once their father had become physically dependent for all his personal care he would also have become incapable of directing his care. As such, this case raises the issue of how to determine when a proxy is, in fact, legally and operationally permitted or expected to make important healthcare decisions, especially crucial decisions about life and death. When a patient is very ill, it is also easy for the physician to lose sight of the patient’s enduring decision-making capacity, and this can result in a great deal of physical and psychological distress for the patient. Creating the opportunity for the patient to safely communicate his or her wishes at the end of life, and then dutifully carrying them out, upholds the patient’s dignity and contributes to the so-called “good death.”
It was recognized after further debriefing about this case with the PCU multidisciplinary team that a preadmission meeting would have been beneficial. However, such meetings may not always be possible. In practice, preadmission meetings are not routinely offered, or they are only offered when “red flags” have been identified by the sending or receiving teams. Although the resources for preadmission meetings are potentially available in most palliative care and long-term care programs, the usual budgetary and staff allocation for such meetings may not always be possible. Although written materials can be provided, families in distress frequently do not read such materials and need the face-to-face interaction with the doctor—the ability to question the doctor and/or healthcare team before accepting the fact that the end of life is imminent and that comfort should become the primary goal of care. For example, family members may not fully understand that the more commonly used comfort measures include medications that cause somnolence, and they may view these measures as prematurely taking their loved one away from them.13
Conclusion
Many times, the family of a patient who is dying will imply an understanding of what is meant by “end-of-life care” within the PCU or hospice setting, but are not fully prepared for the realities of their loved one’s death. They may not fully appreciate the fact that, in this context, clinical care does not extend to the treatment of events, such as infection or malnutrition, with anything beyond comfort measures, and the deliberate avoidance of medical treatment for events that are so commonly treated in otherwise healthy individuals can seem disturbing or unkind.
Despite the extensive efforts of professionals committed to delivering the best palliative care, and the more widespread use of advance care planning, including advance directives, it appears that individuals continue to embrace complex late-life clinical interventions that attempt to salvage or extend life; this tendency persists even in light of an individual’s apparent understanding of the limitations of treatment in these contexts. To prevent undue suffering in patients at the end of life, it is important to create numerous opportunities for patients to express their wishes and to facilitate open communication among the patient, family members, and interdisciplinary team with the goal of balancing realistic expectations with dignified, compassionate care.
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Disclosures: The authors report no relevant financial relationships.
Address correspondence to: Michael Gordon, MD, MSc, FRCPC, Baycrest Geriatric Healthcare System, 3560 Bathurst Street Room 1C24, Toronto, ON M6A 2E1, Canada; m.gordon@baycrest.org
Acknowledgements: The authors would like to thank the staff of 6 West palliative care unit at Baycrest, whose efforts help those in need receive the care they wish and deserve.
