Somewhere around 2004 or so—I no longer remember the exact year—my father was diagnosed with Parkinson’s disease. We’d been wondering why his legs had been feeling weak, and at first had thought he might have cervical spinal stenosis (a condition in which the spinal cord becomes compressed in the neck). But when the tell-tale cogwheel rigidity appeared, a neurologist confirmed Parkinson’s was the cause. We weren’t too concerned as even I, with my doctor’s knowledge, considered Parkinson’s primarily a disorder of movement, and a treatable one at that. I’d had many patients with Parkinson’s whom I’d cared for over the years and all seemed to me to have maintained a fairly good quality of life right up until they died.
At first it seemed as if this would be my father’s fate as well. He continued to jog and lift weights, and every year on his birthday continued to do a number of push-ups equal to his age (he’d ceased to be able to do them without stopping when he hit 50, but stopping only once at the age of 70 was something no other person I knew at that age could do).
But then his memory began to falter. We all noticed it before he did, but soon he was noticing it as well. I knew that Parkinson’s disease was sometimes associated with dementia—as well as depression, anxiety, and even hallucinations—and soon it was clear to us that his cognition was being affected by the disease perhaps even more than his movement.
And then he began to develop leg spasms. Intense and unpredictable, they would strike at a moment’s notice and pull him out of whatever conversation he was in. Then one night while lying in bed his calves began to hurt so badly my mother called 911. An ambulance took him to the emergency room where he was diagnosed with Parkinson’s dystonia. He was sent home on narcotics. After that he seemed to deteriorate quickly. (Though, as with many neurodegenerative diseases, that was only how it seemed to us. As more and more neurologic function is lost each subsequent loss becomes more significant—making up a larger percentage of what function is left—and making it appear as if the disease is accelerating when in fact it’s only nearing its end-stages.) A few months later, my mother told us that he was awakening her in the middle of the night and insisting she call 911 on weekly, if not nightly basis. The pain was just too much, he told her.
Around that time we began noticing that his personality had changed as well. No longer the supremely confident patriarch of our family, he freely admitted how often he felt afraid, especially when he would hallucinate in the middle of the night (when getting up to urinate, he would frequently describe “insects crawling around the bathroom rug.”) He became unsure whether things that were happening to him were real or “dreamed.” (Again, all well-recognized symptoms of Parkinson’s.)
One night, then, he again woke my mother and insisted she call an ambulance to take him to the hospital. This time he was admitted for uncontrolled leg pain and given Ativan (a sedative) for his accompanying anxiety. Shortly thereafter he became nearly unresponsive. His pain was controlled, but it took almost a week for his mentation to return to its baseline. After lying in a hospital bed all that time, then, he’d become too weak to stand. So he was discharged to a rehab facility in a nearby suburb.
There he received physical therapy and began to recover his strength. But by this time my mother no longer believed she could care for him by herself at home. We (that is, my brothers and I) agreed, so we told my father he needed to be transferred to the nursing home wing of the rehab facility. To our great surprise, he agreed.
Over the next two years, then, his decline continued to appear to accelerate. He began having difficulty finishing his thoughts. He would begin to speak with a clear purpose in mind, but then his words would taper off, leaving his sentences mostly unfinished. And then a strange symptom appeared: whenever he would become emotionally aroused—even by a pleasant conversation—he would be gripped by intense leg spasms. So we began to truncate our conversations so as not to overly arouse him. I thought this a particularly cruel symptom of the disease, one I’d never observed in any of my own Parkinson’s patients ever before.
And then he lost the ability to read. We were never sure if it was because he could no longer understand what he read or that reading itself would cause dystonia. But as a result of this, he was never able to read my book. He glowed with pride in my accomplishment, I could tell. But he couldn’t understand it.
About six months ago, then, he was found one morning to be unresponsive. He’d been found this way many time before—had, in fact, been taken to the hospital only to wake up spontaneously without any intervention—so we all thought this was most likely due to the same causes as in the past, namely his being over-sedated by narcotics or simply the mysterious workings of the Parkinson’s itself. As a result, we told the nursing home not to send him to the hospital when he was found that way but to observe him for 24 hours as the pattern (of return to his baseline) was the same every time.
This time, however, he remained minimally responsive for two days. When I came to visit him in the nursing home, he looked bad. He hadn’t eaten since he’d become unresponsive, nor had he urinated. The nursing home had given him 2 liters of fluid intravenously, but then stopped. I knew if we didn’t admit him to the hospital, he would die soon, from dehydration if nothing else.
My family and I needed only a few minutes to decide we weren’t ready to allow that to happen. We thought that if there were some cause at work here other than the Parkinson’s disease we might be able to reverse it and return him to a better baseline than we’d seen in months, a baseline that might be worth returning to.
At that point, my mother quietly reminded us about the conversations we’d all had with him decades earlier regarding end-of-life care. He’d expressed his desire in those conversations not to have his life continued if continuing meant he wouldn’t be able to live a satisfying existence. I even recalled a specific talk he and I had during my first year of medical school when he’d asked me if I would “prescribe a pill” if he ever got to the point where his life was no longer worth living. My response at that time was bewilderment—not because the idea of providing my father the means to kill himself was so abhorrent to me, but rather because I had no idea how I would be able to make it happen. What pill would I prescribe? How would I know the right dose to give him? What if I was discovered?
As a result of those discussions we all believed we knew what he would want if some acute catastrophe befell him. But we never discussed a scenario in which he slid into an unendurable existence gradually. Though I was never clear on exactly what he meant all those years ago by “a life no longer worth living,” I thought that if he’d been able to look into his future back then and see what was to happen to him that he would have judged the existence he’s living now as the life he most feared.
But prior to this recent decline, when my mother had asked him if he wanted heroic measures applied if his heart stopped beating or he stopped breathing, his answer had been yes. We were all greatly surprised by this as it represented (to our way of thinking, given his current state) a complete reversal of his prior wishes. Yet he seemed to understand exactly what my mother was asking and had been quite insistent and clear, she believed, about his answer. Given this, as well as our reservations about doing nothing when we had the power to do something, we decided to admit him to the hospital.
There doctors discovered he had an empyema (infected fluid around his lungs). They put in a chest tube and placed him on intravenous antibiotics. It took several weeks, but eventually the infection resolved. He came back to the nursing home, mentally more alert, but physically unable to get out of bed.
So over the next several months, he had more physical therapy. Eventually he was able to sit up in a chair and transfer from the bed to his wheelchair with help. His ability to think, however, has continued to decline. It’s now become impossible to have conversations with him. He recognizes everyone, remembers events from his past well—even seems at times to understand our conversation. But he’s unable to complete a single sentence. In fact, most days, he can barely even start one.
When I look back on our decision to admit him to the hospital for what turned out to be an empyema, I feel no regret. None of us, I think, were quite ready to allow him to die by our inaction when our action had the power to save him—and when saving him might have meant a return to a baseline that enabled him to find some small enjoyment in life. We turned out to be wrong, but at the time we had no way of knowing we would be.
For though he may yet experience joy occasionally (when my son hugs him goodbye, for example), the great bulk of the time he no longer seems to. We don’t think he’s suffering physically. But we can’t tell if he’s suffering emotionally because he can’t tell us.
Yet I don’t believe the father I knew would want to live like this. He can’t read anymore. He can’t exercise. He can’t walk. He can’t even talk. How could he not be suffering, no longer being able to do these things he loved so much?
Then again, maybe he isn’t. Maybe the Parkinson’s disease has (mercifully) so impaired his mind that he’s no longer able to perceive the true meaning of these losses, that they don’t impact him the way the would have had he somehow been able to maintain his cognition. Maybe the small joys he gets from seeing us and his other family and friends is enough to make his life still sweet. I simply don’t know. He once started to tell us that “his life isn’t very enjoyable these days” but we never found out where he was going with that thought because he could never complete it.
So I want my father to die. Or I should say: I don’t want him to live. Not, at least, like he is now—and here I will admit many of my reasons for this are selfish—for the longer I see him as he is now, the harder it will be to remember him as he was. I don’t want to dread going to visit him (as I do). I don’t want the rest of my family to see him as he is or be sad about it. I want to be able to start mourning the father I knew, who has been gone for at least a year, but who I cannot yet mourn because some vestige of him still remains. (One thing this experience has shown me is that the notion that there exists an essential essence of who we are, some central core, is a fallacy. We are, rather, the sum of innumerable neurological circuits. And as I’ve watched my father’s circuits slowly be shut down, one by one, I’ve not once come across a point in time, a loss of a particular function, or a statement he’s made that caused me to say, “There! He’s no longer my dad.” Rather, he arrived at the person he is today by an invisible, gradual process of pruning. Whatever it is that makes us us is not a single switch that can be flipped on or off. It’s thousands, if not millions, of little switches, each which contributes only partially to the light we shine.)
In his book Stumbling on Happiness psychologist Daniel Gilbert argues convincingly that most of the time most of us mispredict how we’ll feel about future events, both good and bad. We imagine ourselves to be far more more positively impacted by good events and more negatively impacted by bad events than we actually end up being. So perhaps my father really is finding his current state less awful than he anticipated all those years ago when he and I talked about my “prescribing him a pill.” I fervently hope this is the case.
But I don’t actually know. In fact, I’m not sure he knows. So at times I find myself haunted by the question of whose end-of-life instructions we should follow, the father who spoke to us while in full health, years away from death, or the father who’s now changed those instructions but whose thoughts are so addled I wonder about his ability to understand—or judge—the consequences.
It seems impossible to consider helping him to die now given that his last cogently expressed wish was to live. Even if he’s changed his mind since then, he’s no longer in a place where he could persuade me to do it, for he’d have to argue with a force of will and intellectual conviction he no longer has. Allowing a person to die through inaction is difficult enough—but actively helping someone to die? It may be morally equivalent, but the weight of it feels entirely different.
Yet I believe a patient’s autonomy in situations like my father’s remains the most important thing. When a patient says it’s time to go, it’s time to go. I wrote in a previous post, The Six Reasons People Attempt Suicide, that one basic reason people want to kill themselves is because they have a philosophical desire to die. That is, in the face of a painful life that is soon to end anyway, they want to assert their autonomy, their sense of control over themselves, and be able to decide not only that life is no longer worth living but also how and when they want it to stop. I believe now, as I believed then, that we should do more than respect this; we should support it. For life is limited no matter what we do or want. Suffering, however, modern medicine has given us the power to control. And as modern medicine has also given us lives that are paradoxically more likely to end in suffering by prolonging them beyond what it once could, I believe we’re obligated as a society to muster the courage to make the end of suffering—not the mindless prolonging of life—our principle aim.
Unfortunately, however, my father can no longer tell me about his suffering. I surely wish he could, though. I wish he and I could have a conversation now like the one we did when I was in medical school. Because if he asked me to “prescribe a pill” for him now with the same conviction he did then, I just think I might.