While hazarding the hospital for a non-Covid emergency, Doña Quixote revisits her end-of-life decisions
There is no time like having emergency surgery during our worldwide reckoning with Covid-19 to revisit one’s notions of what the end of a life might look like. On the morning of Saturday August 8, I first became aware of intense, lingering stomach pains. By noon, I had to cut short an outdoor get-together with friends because of the increased severity of the pain. By 3 pm, the pains were unabated, and I started vomiting. Shortly after that, we called our family physician and was told to go to the emergency room at the University of Utah Hospital. After hours of tests, during which my pain did not budge before the medications offered, I was diagnosed with a blockage in the lower end of my large intestine. Given the life-threatening nature of such a blockage, I was scheduled for emergency surgery at midnight. Thanks to my privileged status of having medical insurance and being close to a great hospital, my life was not really in danger at any time. However, the experience of having to go to the hospital during a time when Covid death is all around us caused both Peter and me to think and talk about the thin line between life and death and circle back to the end-of-life plans we had made after my dementia diagnosis.
After five days in the hospital, I was happy to be at home—never mind the surgery cut that reached around my belly button down to the bikini-line scar left by previous abdominal surgery. Alas, my bikini days seem to be over!
During my misadventure, Doña Quixote (a.k.a. My Dementia) took a front seat, all but banishing me from the scene for the first few days. During the year before my hospitalization, Peter and I noticed an acceleration in my downward slide. Before the start of Covid, I started getting badly lost in the two formerly well-known malls that had been a haven of independence to me these last year. My kids and my American family have also noticed my downturn: I change topics in the middle of a sentence, drift out of conversations without noticing. I, who used to track the story in a movie perfectly, have to ask Peter all the time what’s going on in the video we’re watching. In the middle of going somewhere, too, I ask Peter where we’re going and he tells me “the doctor, Starbucks, grandkid night.” A minute later I ask again. Again.
A piece from Erik Thor Sandberg’s Cerebral Bloom paintings
Needless to say, with pain added to my usual confusion I was not able to say much for myself when we arrived at the hospital. Peter explained about my inability to give any information other than my name, and they allowed him to go into the inner sanctum of the hospital wards with me. After my surgery ended at 3 am (I would later learn), a nurse made a bed for Peter from the fold-out couch in my room and he spent the rest of the night with me. During the days after my surgery, he came to visit me at least once a day for a long time and for the first day or two acted as my communication interface with the hospital staff. A day or so into my stay, he discovered that my ongoing state of extra confusion was caused by a “misunderstanding” by which the hospital staff kept giving my narcotics as pain meds rather than just the Tylenol we stipulated when I was admitted. I would never have figured that out by myself. While I’m pissed that an untraceable employee of the U of U hospital made a prescription mistake, I was so grateful to the same hospital for having understood my need for a “translator” during my stay.
During my hospital stay, I experienced indignities of the kind that—if they should be permanent—I described in my my end-of-life plans as red flags that would indicate that I have reached a quality of life that I do not deem acceptable: I totally lost control of my bowels about four times, after which I groggily but stubbornly cleaned myself up in the bathroom/shower but for which I needed the nurses to bring me clean clothes and clean up after me in the room. Because fecal incontinence is not a usual after-effect of my kind of surgery, I had not been given any protective underwear such as Depends. I only received these after the fourth time. I also underwent projectile vomiting four or five times to the extent that each bout required a change of my bed and hospital gown and a big room cleanup—owing to my usual confusion, drugged state, and slowness on the uptake, I every time failed to locate the throw-up bowl with which they had supplied me.
My experience of confusion combined with almost total dependence on others for every daily need briefly threw me into conditions I had expected to experience in the late stages of dementia—conditions I had resolved not to live through once they became the pattern of my life. Peter and I, together with our family, had read, talked through, and watched movies about what happens to people in end-stage dementia. My family agrees with me that one should not have to live through them if the option of death is possible.
The quality of life in the last stages of dementia falls below what is acceptable to me for a meaningful life
After long-term family discussions about my dementia and other end-of-life scenarios, Peter and I each confirmed our wishes in writing: both of us decided that when we are utterly dependent on others and/or when what is most important to us—interacting with the people we love—is no longer possible, our wish is to die by a suicide for which the dying person alone is responsible. No legal jeopardy to each other or our family. My biggest fear is that I will miss the point where I can still mix my own death potion, bring it to my mouth, and swallow it myself. One day you can, next day you can’t.
With the help of my family, I have banished that fear. During a two-year process we called “The Saunders Family Dementia Project,” we figured out a way for me to obtain a legal assisted death when my quality of life drops down below a level that I find acceptable.
As a result of the “Dementia Project,” Peter and I—together with our family, doctors, financial advisor, tax lady, and lawyer—completed a financial plan, Last Will and Testament, and Advance Health Care Directives that give shape to our wishes. As you’ll see in the short film below, our children and their spouses were present when we signed the documents at our lawyer’s office.
Our family addressed, among others, the following questions: What is a quality of life or degree of incapacitation each of us would find acceptable? What long-term care is available for a dementia sufferer of my and Peter’s financial means, through Medicare and private funds? How do we feel about last-ditch life-extending efforts and what would their financial and psychological consequences be? Under what conditions would each of us commit suicide or seek an assisted death? How would each of us react to another’s decision to end their life?
An excerpt from my Advance Health Care Directives:
“A worthwhile life should include joy, acceptance, ‘being with family, having the touch of others, being mentally aware, and not becoming a burden to others.’ Death is as much a reality as birth, growth, maturity and old age.”
We listed flags that would indicate when my quality of life is dwindling below acceptability: Do I appear happy for more hours per day than I am disaffected? Do I spend more hours per day consuming care than just living on my own? Are my caretakers’ children or jobs or marriages or health or quality of life suffering? Do I still make a positive mark on the world, no matter how modest? For example, do I still receive pleasure by cuddling with a friend or child or grandchild? Is it a pleasure for them or am I inappropriate and scary?
When enough of these flags are red, my family has agreed to support me in an assisted suicide. For someone with dementia, though, a legal assisted suicide is not obtainable in the United States. In states where assisted death is legal, only so-called “people of sound mind” can choose to die. Once you have a dementia diagnosis, you are legally no longer of sound mind. No matter that my Advance Directives are signed and sealed in our doctors’ and lawyer’s offices, my wishes before I have lost my reason do not count once I have lost my reason. Therefore, my family and I have planned what we call a “death trip” to Europe. If we can find a way for me to die at home without putting my family in legal jeopardy, we would much rather do that: one possibility is VSED, the voluntary stopping of eating and drinking. People with dementia, with the help of family members who remind them of their wish to die, have succeeded in starving and dehydrating themselves to death. However, VSED has to be done while I can still cooperate with my caretakers. Another possibility for ending my life is to hoard prescription opiates and barbiturates (which I am doing) so that I may use those to die at the right time.
Death tourism to Switzerland
My hospital experience of total dependence on several other people to just get through a single day brought my end-of-life plans to the forefront of my mind. It also emphasized the fact (often discussed in our family) that serious medical mishaps can happen in an instant and that nobody—however much you plan your last days—can ever control the exact circumstances of your death. For example, what if I do not have a gradual decline such as happened over the past nine years, but a sudden one? In the context of microvascular disease, which is the cause of my dementia, I am prone to blood clots in the brain. Some so little I don’t even notice at the time, but some could be large enough to cause a stroke. What happens then? Who in my family will decide whether to just leave me to die as I would want to, or call 911? Is it a reasonable idea to accept medical care until it is clear how big the damage is? But once one is resuscitated and/or hospitalized, you fall under what physician Atul Gawande calls the “seemingly unstoppable momentum of medical treatment,” even in the case that you might have sustained enough brain damage to meet the criteria in my advance directives. No matter how thorough my end-of-life plans, there will be a moment when Peter and my children will have to decide (or the family and I for him) not to intervene in a life-threatening illness or other medical emergency where the pace is much faster than in a dementia decline.
“Humans plan, god laughs”
When Peter and I decided to go into seclusion in March this year, we had each separately decided that we would not agree to be hospitalized or intubated if we contracted the virus: we felt that—given the then (and ongoing) scarcity of hospital resources—treatment should go to younger and stronger people with a better chance of long-term recovery; given our underlying medical conditions, combined with the long-lasting damage then already evident in intubated (particularly elderly) survivors, we believed that—even should we get through the arduous treatment—the damage caused by the virus-cum-intubation would result in a quality of life we did not deem acceptable. We informed our children of our decision and they promised to do everything possible to respect our wishes.
A July 31, 2020, article titled “From ‘brain fog’ to heart damage, COVID-19’s lingering problems alarm scientists” reports that COVID-19 “can disrupt a breathtaking array of tissues in the body…The lungs, heart, gut, kidneys, blood vessels, and nervous system are vulnerable.” Together with many other physicians, Adrija Hajra from Albert Einstein College of Medicine in New York City emphasizes the long and difficult duration of recovery and the fact that some people are left with what appears to be permanent, often body-wide, organ damage. She continues to care for those who were infected in the spring and are still recovering.
What my hospital stay and recovery at home also etched on my brain is that Peter would be the caretaker I would “use up” if I should permanently be totally dependent on him. (Although both my children and their families kicked in with food that kept us eating for days, with the danger of Covid they could not otherwise help.) Peter was my go-to person. I could see the wear on him as the days went on, even though he never said anything and did not lose his desire to help. Even though my time at the hospital and the help I needed afterward at home was not as long and presumably not as exhausting for him as a permanent state of looking after me in the later stages of dementia would be, the toll on his body and spirit was large enough. He himself has serious health issues, and the stress and physical hard work to care for me did his health no good. Fortunately I recovered to a point where I could be more independent within a week after arriving home—that meant that by then he had already gone through two weeks of stress and errand-running and cooking and caring for me. I would not ever want to put him through two more such weeks, never mind years of caring for someone who no longer talks or recognizes him. See the movie Away From Her, in which the husband of a woman with Alzheimer’s falls in love with a male patient in the care center. Heartbreaking, despite what seems like a “good” ending—one that doesn’t cut it for me whatsoever. I don’t want Peter or my children to ever go through such pain. I’d rather be dead.
Peter, my helper, my husband, my lover, my Rock. Photo credit: © Paul Hanseen, 801-637-0777
Despite the re-thinking that I’ve done at the start of Covid and during my recent hospitalization, I still find great peace in my family’s promise to assist me in dying in the most feasible way when the time is right. Planning and communicating with my family has freed me to take the best from each moment and live my daily life with joy. Their gift makes me feel similar to what religious people claim in the phrase “let go, let god.”
Lezley Saar. A piece from her Monad Series, 2014