Choosing Death
At the beginning of the 2020 Coronavirus pandemic, I started seeing a patient unlike any other I had visited. Due to the virus, the circumstances were, at the least, bizarre. I had to get used to completely different procedures, PPE (Personal Protective Equipment), and touching and social distancing rules. For the first time, I faced a patient whose choice to die was more striking because of my biases. My experience taught me about choices concerning the quality of life and how every choice is personal and unique.
As I walked up the path to the front door, I checked my PPE. Gloves, check. Mask, check. Face shield, check. Remember to keep my distance, check. No touch, check. A month earlier, there were no PPE requirements, and volunteers were encouraged to touch patients. Just a month into the Coronavirus shutdown of 2020, I was about to meet a new patient.
And to answer the question everyone asks about why I would do this work, meet new people, and enter homes I was unfamiliar with during a pandemic. It's simple. Death from other diseases did not take a break. People with devastating illnesses still needed comfort and companionship. The same people required support as they began their death work and transition from this world. Our work did not stop during the pandemic. All hospice workers, including volunteers, were considered essential medical workers. The hospice service gave volunteers PPE and ensured we would be among the first vaccinated.
I gave the family a wide berth when I entered the cute little cottage. I felt so awkward with everyone in masks and the smell of hand sanitizer in the air. It was almost hospital-like. This hyper-protective environment was a far cry from the coziness of all my previous hospice home visits. After awkward introductions, I sat at a white pine dining table across from a small, elegant woman who looked to be in her late sixties. I was first struck by how healthy this lady appeared. She did not seem to be sick at all. I was used to a healthy rebound look in patients on hospice service for a few weeks after removing the devastating effects of chemo, radiation, and other harsh treatments. Still, Susan looked great. She was not gaunt and profoundly weak like most of my patients. She seemed calmer than other patients I've visited, somehow at greater peace and lacking that reluctant resignation many patients exhibit.
“The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time.”
We made the usual small talk, getting used to each other. Susan was a calm and regal woman. She sat up straight. Her diction was perfect. Early on, I began to think of her as a school teacher. But when I asked if she was an educator, she told me no, that she was an executive assistant. I could see that in her also, running an office and being the gatekeeper for the E-Suite. I could tell she ran an efficient and disciplined office. She related that secretarial work was one of the only options for a typing school-educated woman in the 1940s.
I did a double-take. After a quick mental calculation, I forgot my manners and blurted, "You're in your 90's?" She looked no more than 70. I'm sure I turned red when I realized my faux pas.
Susan tittered kindly and rescued me, "Oh, that's ok, young man, I'm way past worrying about my age."
I was taken aback by this and could only say, "I'm 55!"
"Oh, so you are just a baby!"
We both laughed.
"Well, you do look pretty good even —"
"It's alright, you can say it. I look pretty good for a hospice patient."
I nodded, and she continued more slowly, "That is because I'm not too sick yet."
She stopped to let this sink in and added, "Well, I have some pain, and I'm a lot more tired than I ever was in my life."
She could see what I was thinking and continued, "I'm in renal failure; my kidneys are stopping."
"And that's a result of what? Cancer?"
Susan looked down and sighed, "No. My kidneys are giving up on me. That is all."
"What about dialysis?"
"What about it? Being hooked up to a machine five times a week for hours? Tubes permanently in my body. Infections. Hospital stays. No, thank you!"
"So, you're refusing treatment?"
"Yes, and don't look at me like that. I am 93 years old, and I'm done. I don't want to spend the rest of my life sick and dependent on others, hooked up to machines more often than not."
"But your family!"
"My family will be fine without me. I don't belong to them any more than they belong to me. I still have to make the decisions about my life that are right for me."
“I’m the one that’s got to die when it’s time for me to die, so let me live my life the way I want to.”
She was clear about her choice, but I first wondered whether she was depressed or suicidal. I had always considered DNRs and choosing to die to be only the resort of people with irreversible mental impairment or other super severe debilitation. Just 14 years earlier, my parents and I decided to remove my brother from life support after a devastating auto accident. We made this decision after doctors told us that he would have quadriplegia and be without the cognitive capacity to understand someone was brushing his teeth for him. It was an excruciating decision to make, but it was not a difficult one. We knew my brother would not want that life.
I wondered if Susan would change her mind as time got shorter and shorter. She did not. She never wavered in her decision to allow her death to come naturally and sooner, even as she weakened.
Over the subsequent few visits, I learned that Susan grew up in the Deep South, Alabama. Her family was poor, as many people were then, and they grew and raised most of their food. After typing school, she found a local job but eventually moved to southern California for the many work opportunities. She married and started a family. After she and her husband retired, they moved back to Alabama and stayed there for about 20 years.
"You wanted to go back there?" I was used to people leaving behind them permanently the place where they experienced a youth of poverty. Here was someone who returned to her roots, even though she fled years earlier.
"Of course. It was not all bad. The pace of life is slower there, and people are real friendly. Most people just want peaceful lives."
"You have good memories?"
"Yes. I do have fond memories. It was a different life than in the big city of Los Angeles."
"More life choices that you had to make?"
"You got it!"
“Life’s all about choices. Everyone’s destination is the same; only the paths are different.”
I learned a lot about Susan's life. She could maintain an egoless distance from her history, own it, and speak her truth like no one I've ever met. She could recount mistakes and bad luck as readily as her triumphs and brilliant moves. But the most important lessons from her came in her bearing, strength, and quiet determination in the face of death. The fact that she chose to leave the world on her terms and stuck to that decision was powerful to witness. She made life decisions that might not have been what many other people might make. And she embodied one of the core principles of hospice, that patients are in control of their own lives all the way to the end.
The last time I saw Susan, she was bedridden and confused due to the unfiltered poisons in her blood. Her daughter and I talked to her, sang, and patted her for comfort. The next day I received word that Susan had passed in the evening, peacefully asleep, on her terms.
I still see Susan's choice to die as different from the choice I can imagine making in that situation. Of course, I'm not in that situation, so I might not feel the way I do now. Still, I respect her right to choose that path. When I think about it, most hospice patients choose to die gracefully and with dignity. We often hear stories about doctors telling patients that there is nothing more they can do to slow or stop the disease's progression. But this is not the only or the most prevalent situation. Many people choose to die in peace rather than pursue debilitating treatments that won't extend life by much but will make any life extension a miserable one—the quality of life matters. I think Susan made decisions based on the quality of her life, and that was her greatest teaching.
