Denial and Dignity

“This is not your mum anymore.” Terry, one of the people Tim Falconer interviewed, talked of how even as his mother was described as being in a vegetative state, he always treated her as if she was there. Janet, whose daughter Stephanie was comatose after the removal of a brain tumour, spoke of not wanting to discontinue treatment for her daughter. While Janet did not expect Stephanie to wake up, she wanted to retain hope and respect for her life.

In the rescue culture of contemporary medicine, Terry’s and Janet’s stories illustrate families’ agony in deciding how to care for their loved ones facing irreversible decline. Beginning with recollections of his own father’s death and the role of ethicists in an increasingly complicated medical world, in That Good Night: Ethicists, Euthanasia and End-of-Life Care journalist Tim Falconer explores how modern high-tech medicine has ironically made dying worse, rather than better. Using stories of patients who agonize over their impending loss of control and discussions with ethicists who work with families fighting over end of life, Falconer examines how the juxtaposition of limited resources and heroic medical culture compounds the challenging question of who has the right to decide how and when one should die. Appealing to our common desire to “go comfortably and painlessly and with as much of our dignity intact as possible,” Falconer urges ethicists and citizens to engage in serious debate of euthanasia and assisted suicide.

As a bioethicist whose work in clinical ethics is also dominated by end-of-life issues, I particularly welcome how That Good Night includes multiple voices and perspectives—it weaves stories of patients, families, physicians and ethicists together in exploring how our healthcare system, despite its promises to be patient centred and respectful of diverse perspectives, often fails to honour the wishes of or provide comfort to those who are facing impending death. Various anecdotes illustrate how the lack of appropriate support has led to people dying alone, in pain or hooked up to machines.

Nonetheless, as powerful as the stories are in conveying patients’ and families’ agony, some of the discussions Falconer presents may also inadvertently oversimplify the meaning of a good death.

The journey of one of our patients in her mid seventies, whom I will call Helen, ran through my mind when I read some of Falconer’s stories and contemplated how our healthcare system and society in general can improve end-of-life experience. A woman with end-stage dementia, Helen had deteriorated to the point where she had severely locked joints and painful bedsores. Her adult children recognized that their mother was dying, although they also seemed to believe that she could improve with the help of intravenous therapy and aggressive feeding.

Helen’s medical team, who saw its main duty as promoting the patient’s clinical interests and physical well-being during her last days, was concerned that the family’s desired interventions were futile and would prolong the patient’s physical suffering—multiple attempts to restart IV therapy were painful, and Helen also risked developing aspiration pneumonia from oral feeding. Since these measures would not improve Helen’s functional status or quality of life, the team believed that palliative care would be more appropriate. Like some of the families in Falconer’s stories, there were worries that Helen’s children, who resisted the team’s recommendations, lacked insight into their mother’s prognosis or were in denial.

But what exactly are these families denying? And how do we define and measure benefits?

It is apparent that from Falconer’s point of view, a dying process like Helen’s, accompanied by physical distress brought about by the family’s desired procedures, constitutes a poor one.

But is physical pain the most important criterion in determining the quality of one’s dying?

When my physician-ethicist colleague Dave Unger worked with Helen’s family and the team in facilitating understanding and building consensus,

it became clear that appropriate end-of-life care is not simply a matter of easing Helen’s physical suffering. As a family physician working with HIV/ AIDS patients, Unger is not only knowledgeable in clinical issues—he is also astute to team dynamics and the emotional turmoil that families go through in processing difficult prognoses. Instead of focusing only on the medical factors, he invited the family to tell the team about their mother.

It is in the sensitivity to different value systems and the origins of such diversity that I think ethicists can help to move along discussions of futility and end-of-life care in general. Part of the initial impasse in Helen’s situation was the result of divergent value systems between the team and the family, even as both sides were trying to advocate for Helen’s best interests. The team came from the clinical perspective that focused on Helen’s physical and mental deterioration, whereas the children came from a relational perspective that centred on how their decisions would symbolize who they were as a tight-knit family. Helen’s children told the story of a woman who devoted her whole life to the family and never asked for anything in return. It was a tale that reminded us that despite being mostly non-responsive and incapacitated, Helen was still their mum. To the children, the IV therapy and oral feeding were not futile. Even though they did not improve Helen’s underlying clinical conditions and might have even exacerbated her physical discomfort, they slightly extended her life and allowed the children to ensure that, even as their mother’s functioning was deteriorating, they continued to attend to her and give her every chance at life, just as she had tirelessly cared for her children when they were younger.

Listening to patients’ and families’ stories can help us to resist prematurely labelling families that want to maintain hope as being in denial or reach the overly simplistic conclusion that pain by itself overrides all other considerations in making a dying process unbearable. Janet did not deny that Stephanie’s prognosis was grim. Neither did Helen’s children dispute that their mother’s functioning was declining. What these family members were questioning, it appears, is the common assumption that only clinical factors are relevant in determining appropriate end-of-life care, or that functional improvements are the only worthwhile benefits. In another ethics consultation, the son of a patient in his nineties with late-stage dementia and other co-morbidities, whom I will call Jack, told me that he resisted the team’s “ageist” recommendation to cease IV therapy because he was told the same thing two years prior, that the therapy would be fruitless to treat the elderly patient’s conditions and that his quality of life would remain poor. While the team wondered if the son was in denial, he said that if he had followed the team’s original recommendation, his father would have died, and he would have to live with the guilt of having given up on him without trying everything.

Without romanticizing caregiving work and physical or emotional suffering, I would like to point out that many disability scholars and activists have cautioned against our negative stereotype of dependency and our biased views on quality of life. While clinicians generally focus on patients’ functional status and physical symptoms in assessing quality of life, these are often not the only relevant considerations for families, some of whom also worry about the symbolic meanings of their decisions, particularly regarding how they see their actions as promoting their familial duties to uphold what they perceive to be the patient’s best interests. Helen’s and Jack’s families remind us that our human condition and personal identity are more than a compilation of clinical facts and functioning status. They are also about respect, hope, relationships, devotion, love and memories, all of which affect how patients and families deal with grim prognoses and prepare for the impending demise. As Kerry Bowman, an ethicist Falconer interviewed, also points out, the end of a loved one’s life is a profoundly emotional experience. When we treat end-of-life care as primarily a clinical event and focus only on physical symptoms, we miss many important factors that contribute to the patient’s overall well-being and quality of life.

Helen’s and Jack’s stories also raise questions of what it means for one to have dignity, which I contend is a much messier concept than Falconer seems to acknowledge. While I applaud Falconer’s critique of our society’s uncritical use of high-tech medicine to extend life indefinitely, some of his discussions appear to imply that to have dignity is to be pain-free and in control, or that a “painful existence” is by itself “degrading.” Robert Buckman, an advocate for legalizing euthanasia, is quoted as saying that patients suffering severe pain lose “their individuality and humanity.” While being comfortable and maintaining control are important and desirable, it is unclear how we can leap from arguing for minimizing dying patients’ pain and respecting their values whenever appropriate to concluding that a life without control is one lacking dignity or humanity.

In the western philosophical tradition, most notably following Immanuel Kant’s concept, a being with dignity is one who has absolute worth and who ought to be respected no matter what. A person’s dignity imposes constraints on our treatment of them, leaving open the question of what we may be allowed to do to those considered to lack dignity. Helen’s family did not seem to think that their mother’s dignity depended on her capacity to respond, or on her being in control or pain free, even as they treasured the rare moments when Helen appeared to be smiling at them and were torn about how repeated initiation of IV therapy caused or exacerbated discomfort. Jack’s son also never thought that his father’s dignity was compromised by depending on others to care for him. While acknowledging how financially and personally taxing such work had been, he insisted that it was his honour to have the opportunity to give back to his father. It was perhaps exactly because these families believed that their respective parents still possessed dignity that they considered it appropriate or even obligatory to continue treatment.

As Falconer’s title suggests, this book is also a discussion of euthanasia, so it is no surprise that many stories carry the message that our society should seriously consider the merits of legalizing euthanasia and assisted suicide. Elizabeth, a young woman with advanced multiple sclerosis, travelled to Switzerland to seek physician-assisted suicide when she decided that it would be too much to endure imminent paralysis. Peter, who was deeply concerned that his mother’s cancerous body was riddled with pain, joined his brothers in hastening her death with drugs—“she wasn’t living anymore, so [they] recognized that she had to be put out of her misery.” Terry, who initially resisted professionals’ suggestions that his mother was no longer there, later thought that “there was no endgame that’s recognizable as being worthwhile” and opted for an aggressive course of morphine therapy. While it is unclear that the latter cases fall under the definition of euthanasia or assisted suicide, they do clearly urge discussions of legalizing such procedures.

Whether it is because euthanasia and physician-assisted suicide are illegal or because few would admit to thinking about putting their loved ones out of their misery (or believing that they have such a right or duty), no patient, family or professional has ever approached me about hastening the death of a patient. In fact, most end-of-life ethics consultation requests that I receive relate to issues of families insisting on continuing treatments that are deemed by the professionals to have little or no clinical benefit. As we gradually lose sight of how we die in the era of rescue medicine, I applaud Falconer’s attempt to facilitate discussions of end-of-life care. Nonetheless, an offhand quotation of Bowman suggesting that attention to dying patients’ spiritual well-being is a form of “mandatory intimacy,” which may misconstrue the nature of palliative care in the first place, does not fully explain why changing Canada’s policy on euthanasia and assisted suicide is a better alternative than improving utilization and understanding of various forms of palliative care. Many of Falconer’s stories are powerful as individual tales of heartbreak and frustration, and urge us to look at the larger social and contextual issues surrounding death and dying; but they offer little reason to believe that legalization of euthanasia and assisted suicide implies better end-of-life care. It is unclear if proper supportive care was made available to Peter’s and Terry’s respective mothers, and if not, whether it would have eased the patients’ suffering and the families’ agony. (Ironically, Peter’s mother, who was “wracked with the most unbearable pain,” “wouldn’t go” because “her five favourite planets [her sons] were orbiting around her”—Peter had to convince her that she should “let go” and “make that step.”) Notable American legal cases have shown that some people who seek assisted death would want to live if social support and other arrangements were available, even if their physiological condition remained unchanged. While such a revelation does not by itself refute euthanasia and assisted suicide, it cautions against a simplistic assumption that legalizing these procedures would necessarily mean better respect for our autonomy and more humane end-of-life care.

As Falconer warns that judges and physicians are the wrong people to give us answers in end-of-life disputes, it is interesting to note that there is at least one hospital in New York that requires an ethics consultation for each case involving withholding or withdrawing of life-sustaining treatments. It is not clear whether mandatory ethics reviews would change the dynamic of team decisions, but as the experiences of Bowman and our hospital show, ethics discussions can often help promote better dialogues and understanding for all sides, bringing to light previously neglected perspectives and providing greater clarity in adjudicating end-of-life disputes. Rather than bestowing authority to yet another group, ethics consultations can be a humbling experience, demanding us all—ethicists and clinicians included—to appreciate the humanity and dignity in each of us, as we find appropriate ways to help dying patients to go gentle into that good night.