Abstract
Human dignity, I feel, rests on choice.
“We fight, fight, fight to the bitter end, don't we Mama?”
“Mamma” was Wilma, a 65-year-old woman riddled with multiple myeloma. Her bed was surrounded by her son William, William's aunt, and her alcoholic ex-husband who was asleep, snoring on a bedside cot.
William grabbed his mother and repeated his refrain: “We fight, fight, fight to the bitter end, don't we Mama?”
Wilma had exhausted all treatments for multiple myeloma, and was imminently dying, but during her lucid moments, she had exhorted William with words that tormented his already difficult grief and bereavement: “Don't let me die. Don't you let me die.”
I was consulted to see William, his father, and his aunt to help them deal with the dying process, and to try to convince William to transition his mother (who was now nonverbal) to hospice and comfort care, and if possible, to an inpatient hospice unit closer to home.
As I looked at William, he pulled his hair, made fists, then pulled his hair again, all the while repeating his now common refrain: “We fight, fight, fight to the bitter end, don't we Mama?” William's anguish was palpable. His aunt stood to the side, almost cowering, her hands clasped together, her face a portrait of sorrow.
“William, your mother has fought her cancer; she has battled this horrible disease—” Before I could finish my sentence, William interrupted: “Dr. Rousseau, we never give up, we fight, fight, fight to the bitter end.”
William was concrete in his thoughts; his ability to think in abstract terms had been taken from him by a motor vehicle accident at the age of 17. He had suffered a closed head injury and was what everyone called “mentally challenged.” But the bond between mother and son was such that Wilma trusted William deeply, in spite of his cognitive disability, and as such, had encumbered him with the title of Power of Attorney (POA). She certainly did not want her alcoholic ex-husband making decisions, and her sister had deferred POA duties to William.
After a long period of time sitting with William, it was apparent he was condemned: his mother's death would leave a hideous wound that would not heal—there would be no scar, no closure with time—William would be burdened with an oozing, nonhealing emotional injury that none of us could do anything about. I felt so impotent, so hopeless, so empty—this was suffering I could not alleviate. Clearly, there would be no comfort care, no transition to hospice (although William did allow a morphine infusion for pain); no, there would only be intravenous fluids, antibiotics, and whatever treatment would stab at this horrible cancer, no matter how futile. And as treatments continued, Wilma intermittently opened her eyes, reassuring herself she was still alive, and that William was there. I wondered if Wilma knew of the burden and the horrific grief she had placed upon her son; I also wondered how this family had arrived at such a place of immense suffering, with no relief in sight. Wilma's room suffocated of guilt…and failure. And of my failure, at least in the eyes of one or two members of the medical team.
As I left Wilma's room, my heart ached, and my mind questioned if the desire to live somehow overwhelms all analytical dialogue and coerces us to make unsound decisions, or at least decisions that seem unsound from a distance? 1 Is the desire not to be dead so strong that we'll do anything to stay aliveto see one more day, to take one more breath, to do what it takes to fight the extinction of our humble and brief existence?2–3 Or do requests for futile and aggressive treatments serve as a protective mechanism to allow time to absorb life-threatening events, or provide some control over a life suddenly so out of control? When I have broached these questions with patients, they give me a variety of responses, but in the end, most just don't want to die, be it fear of the dying process, fear and sorrow of leaving loved ones behind, fear of what an afterlife may be like, or fear that there may not be an afterlife and that this may be all there is.
On the other hand, when I hear physicians discussing terminally ill patients who want aggressive care, the comments are often rather cynical and naïve, and typically share two themes: the lack of “dignity” with aggressive care, and the reduction of any “quality of life” with aggressive care. Dignity and quality of life are individual, based upon personal beliefs and values—and as noted by Wein, 4 what is undignified about wanting to live or to fight relentlessly? I also hear many of these same physicians lamenting “I certainly wouldn't want aggressive treatment if I was terminally ill,” but the reality is, that until we walk in the proverbial shoes of our own disease and confront the absence of a tomorrow, we truly don't know what we would want or do, irrespective of what we espouse while vibrant and healthy. Physicians do not, and cannot, understand what dying patients experience—they don't understand the torment of regrets or the vulnerability of illness, nor can they be expected to unless they have personally experienced the lessons and losses of disease. 5 But what they can do is be present, offer support, compassion, and empathy, and allow patients to die on their own time and in their own ways.
The next day, William was sitting beside his mother's bed. “How's your mother William?”
“We're gonna fight, fight, fight to the bitter end Dr. Rousseau. No comfort care, no comfort care.” His aunt stood in the corner, her eyes fixed on Wilma, her heart fixed on a tomorrow without her sister.
“Okay William, they're going to keep giving the antibiotics and intravenous fluids, and the morphine for her pain. You call if you need anything.” Wilma opened her eyes for the last time and stared straight ahead.
As I left Wilma's room, I thought about the transition from cure to comfort for patients confronting a terminal illness—when it comes time to change course, the complex emotions of fighting mortality may take time, and yes, may require aggressive care to the end. The only control terminally ill patients have is the circumstances of their deaths, and that may mean one more bout of chemotherapy, one more dose of radiation, one more time on the ventilator, and one more shock to the chest. And contrary to the pundits of health care economics and virtuous physicians condemning aggressive care at the end of life, that is okay.
So, as physicians confronted by the certainty of death and the eventual fallibility of our medicines and machines, we honor our own morals and beliefs, and do the best that we can—and we do this by honoring our patients' wishes for the treatment of their terminal illness, and in so doing, their wishes for the terms of their death. 2