Column: Improving Access to Death

[Columnist Lisa Roling is one of our talented monthly columnists. Typically she writes our book reviews. However, this month she takes a break to share her personal experience as a care giver. If you enjoy reading Lisa’s work, consider donating to our Wild Hunt Fall Fund Drive. We are completely reader-funded, so it is you that makes it all possible! So, donate today and help keep The Wild Hunt going for another year. Thank You.]

I didn’t give it much thought when the staff psychologist called and asked me to perform a suicide assessment on Glen.* Since I worked in palliative medicine, it was not an everyday occurrence for me like it was for the psychiatry department. But it wasn’t my first assessment and, as time has proven, it would also not be my last.

It was, however, the most memorable.

Glen was an elderly gentleman who had lived with a slow-growing cancer for nearly a third of his life. Aside from his cancer, his life had been full and good. His marriage was deeply satisfying until his wife’s death a few years prior. Glen enjoyed being a father and a grandfather. He had been passionate about his career then equally passionate about his retirement. His cancer had not been very threatening, just a sort of background noise that he occasionally had to deal with and manage. That was until the week before I met him.

His health had begun to decline significantly over the previous year, a sign that his cancer had become worse. He put off going to the doctor as he already knew what the news would be. He focused his energy instead on getting his affairs in order – updating his will to include his grandchildren; cleaning out and packing up his house; travelling as best he could.

When he did finally go to the doctor and do all the follow-up testing, it was discovered that he was terribly malnourished, had a life-threatening infection, and that his primary tumor had grown substantially. His doctor, apparently choosing to err on the side of blunt honesty, informed Glen that because of the location of his tumor, his death would be by asphyxiation. The tumor was destined to close off his airway over the next several months even though he would remain otherwise relatively healthy and competent. He would likely be very much aware of his suffocation, much as a person drowning would experience theirs.

Naturally, Glen was a horrified by this nightmarish prognosis. He was admitted to the hospital to begin a regimen of IV antibiotics for his infection. In a moment of honest dialogue with his nurse, he admitted that he had decided to commit suicide.

It was at this point that I was asked to see him. For the first 30 minutes of our visit, I just sat at his bedside and listened to Glen. Listening to him talk about his fears, his joys, his plans, including his plan to end his own life before that tumor could strangle him. When he finally turned to me I could sense his anger and defensiveness, as though he was ready to fight with me. As though he was ready to tell me where I could shove my platitudes. But I sat quietly, allowing the silence to be.

He eventually asked indignantly if I was going to have him involuntarily committed. I shook my head and said I saw no reason for it. He looked perplexed. He repeated to me that he fully intended to commit suicide as soon as things got really bad. I nodded and acknowledged his plan. He said again, as though I didn’t believe him, that he would kill himself; that he had been stockpiling opiates and benzos; that he had given many of his possessions away; that he was serious.

I nodded and acknowledged it all. Eventually, nonplussed by my seeming lack of alarm, he asked how I could support him leaving the hospital in a few days with such a plan in place. It was a fair question. 

Taking a chance, I said to Glen, “You said you aren’t ready to do it yet. It sounds like it will take you a few more months to take care of the things you want to accomplish before you kill yourself, so this doesn’t seem terribly urgent.” He blinked and seemed genuinely mystified. I added, “Besides, you just want more control over how you die. Given your prognosis, that’s understandable.”

The next several minutes were spent listening to his anger about wanting to have physician-assisted suicide and it not being available. Perhaps he should move to Oregon. Perhaps he could pay someone to give him an overdose of insulin. Why doesn’t he have the right to control the circumstances of his inevitable death? Why doesn’t he have the right to avoid the suffering that was predicted for him? What does anyone have to gain by watching him suffocate rather than just go peacefully?

Glen was in most ways the opposite of another patient in the hospital at the same time. Jennifer was a young woman who had lived an impoverished life. Not only was she raised in a family that was frequently homeless and always hungry, she had been terribly abused and sexually exploited beginning in early childhood. Jennifer became a shut-in as an adult, terrified by the world and the people in it. She had no family. She had no friends. Because she lacked sound medical care for years, by the time it was discovered that she had cancer, it was quite advanced.

Like Glen, Jennifer also had a tumor that was cutting off her airway. Unlike Glen, she was taking every offer of life-saving medical care offered to her. It started with chemo and radiation. Then it was a tracheotomy. Then it was a ventilator. Then it was drilling a tunnel through the tumor to allow air into her lungs.

Jennifer lived in a bed in our hospital for 6 months. What began as medical care to extend and improve her quality of life moved into the realm of medical interventions designed simply to delay death. Jennifer’s day consisted of pointing at letters on a board to communicate her needs, having diapers changed, getting bed baths, getting tube feedings, having her tracheotomy cleaned out, being shifted in the bed every hour to prevent skin breakdown, and pushing a button for more morphine.

It baffled most of her doctors and nurses when she still refused to sign a Do Not Resuscitate order. Despite a quality of life most of us would consider dismal and unthinkable, it was the first time in her life that her basic needs were met. It was the first time in her life that she felt safe and cared for. She went into cardiac arrest several times during her last week of life and each time her medical team helped her put her death off a little longer so she could enjoy this, the best time of her life.

I don’t think I would make the same decisions in the end of my life, but I understand how she came to value the life she had in the end, as much as I can understand it from my relatively privileged point of view. After her death, I grieved Jennifer’s life deeply, carrying the burden of her story in each chamber of my heart. I still think of her every Samhain, sending my love and care for her into the ethers.

I think of Glen each time I hear about the right-to-die movement. I think of his righteous anger, about his justified terror, about how cornered he felt to make a decision that did not fit in with his values because the options available to him were terribly inadequate. I think about the relief he expressed when I explained to him the potential option of a rarely used intervention called palliative sedation – the use of medications to reduce or remove conscious awareness of intolerable suffering at the end of life. I think about the strings I pulled to find a hospice that would consider providing this type of care, as it was (and still is) highly controversial.

But I mostly remember his smile and the immediate change in energy when he realized that he would not have to end his own life to avoid his doctor’s grim but accurate prediction. His change in plans when he realized he had a choice other than suicide. He went home the following week with my office number in his discharge paperwork.

I received a call from him several months later saying that he was ready to go on hospice care. His breathing had become difficult and he was too weak to care for himself at home. He moved into a hospice unit and, for a few weeks, moderate doses of morphine helped to ease the difficulty he experienced with his breathing. He spent those weeks sharing his most cherished memories with his family, laughing with the hospice staff, and enjoying his favorite foods for the last time.

When the morphine no longer sufficed and his gasping for whatever scraps of oxygen he could manage to inhale became too unbearable, palliative sedation protocols were implemented and he spent his last several days sleeping as comfortable as he possibly could. His dying process was peaceful as he wished for it to be. I also think about Glen each Samhain, grateful for the opportunity to sit at his bedside and help him plan the death he wished for himself.

I have no doubt that people will read Jennifer and Glen’s stories and have strong reactions. Death does that, but especially these sorts of deaths – the ones that are prolonged and full of difficult decision-making. It’s rare for me to find people who want to know they are dying. Most of us would rather die in our sleep or have a sudden aneurysm or stroke and die instantly, never knowing it was coming.

I also hear many people say vehemently that they would not accept any “life support,” having no awareness of how remarkably complex those decisions can be. There is no simple equation, after all, that can be implemented to determine the “best” course of action for any given person. Every person comes to death with unique life experiences, values, beliefs, and hopes and every person comes with different pain thresholds, physical abilities, and responses to medical intervention. All of these considerations (and so many more) contribute to the decisions made about how one will move toward their death. This is why I was able to sit with two different people going through nearly the same medical problem and be able to view each of their very different deaths as “good,” or at least as good as possible given the choices available.

Choice is the impetus behind support for physician-assisted suicide, and this desire for choice is leading to a growth in legislation securing terminally ill people access to medications that will hasten their dying. Though there are few states that allow for this, public support in the United States is strong and growing, with younger generations overwhelming in favor of this option being available. In some cases, just having the option is enough. It’s a comfort to know that there is a way out even if we choose not to take it.

I am grateful for the work being done to make this option available to people with terminal illness, who are facing unfathomable suffering in their bodies, minds, or spirits. I am grateful to people like Brittany Maynard for helping us put aside the political rhetoric of the “Obamacare death panels” and to see a real person attached to these issues. I am grateful to the hundreds, if not thousands, of people who have welcomed me into their homes and hospital rooms and helped me understand better what dying is and what it can be.  

This Samhain, I raise my chalice in toast to the people working to ensure we have a right to the best options medicine has to offer us at the end of our lives. I raise my chalice to the doctors, nurses, social workers, and countless others who sit at our bedsides with caring hearts and listening ears. And I raise my chalice to Jennifer, Glen, and Brittany to celebrate their courage, their lives, and their deaths. May they never thirst.

[Author’s Note: The names and identifying information have been changed or withheld to protect the privacy of my former patients and colleagues.]

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