Abstract
When my father died, I had the great privilege of spending time with him. I came to realize that my internal medicine training was no preparation for the death of a parent. Clinical detachment was never an option. The experience influenced me for the better, because after that I never hated unreasonable families. Two decades later I miss him dearly, yet I often smile and reflect “he loved me, he was proud of me, he was a good man.” His trust in me was a deep and abiding gift, and many other details of his death no longer matter. In retrospect his was a good death. 1
My mother's death was another matter. Over time she'd become reclusive and erratic. My brother and I learned to limit conversation to safe topics or face unpredictable wrath. She was always critical, sometimes charming, often in pain herself, yet oblivious to the pain she inflicted on others. Relentlessly she pushed away family, friends, and neighbors. While not labeled with a formal Diagnostic and Statistical Manual diagnosis, she carried the burden of undifferentiated and untreated mental illness.
One day I sensed a change in her voice. On a hunch I hopped on a plane, even though by history there was only a 50:50 chance she'd come to the door. She did, and for the first time I can ever recall she looked me straight in the eye and said:
“What do you want to know?” “What do you have?” “Leukemia.” “Acute or chronic?” “Acute.”
She produced a packet of laboratory results, and I collapsed inwardly upon seeing her white blood cell count of 106,000/μL, nearly all blasts. At that moment I knew she had only weeks to live (which turned out to be longer—she was a tough old Greek). We hugged silently.
Almost immediately, this sharing left my mother exposed and vulnerable, feelings that were practically intolerable. She admonished me not to inform my brother, my wife, or contact anyone. I didn't realize it, but she had told her doctors and others that she had no children. She had instructed a funeral home “no newspaper announcement, no family, no guests, no embalming, immediate burial” and had altered the spelling of her name in pursuit of anonymity. On one of my subsequent visits she invoked privacy rights to block the hospital from allowing visitors. I lingered in the lobby hoping for a change of heart that did not come, then flew home. Apart from the pain of rejection, I wondered how I'd find out when she had died. She had set a course to die in virtual isolation and appeared to embrace that aloneness, although in reality she was deeply terrified and conspicuously unable to process what was happening.
Sheer intelligence and resourcefulness kept my mother independent, but her volatility intensified under the strain of a mortal diagnosis. She called to say “you need to get up here, I'm dying,” and within hours that transformed into “don't come, I won't answer, I'll call the police.” Or “mind your own business, I want you out of my life” followed by an urgent phone message “I have a rapid heart rate, what should I do? call me!” I did not know what to do. I cried on my drive to work at the thought of her suffering, my inability to alleviate it, and the overwhelming uncertainty of everything except her impending death and our end-stage pathos.
As a hospitalist I've cared for mentally ill patients and for terminal patients, but it hadn't occurred to me that the intersection of these two worlds would be so agonizing and confusing. In the hospital we pounce with medications and compartmentalize problem lists. We do not routinely devote attention to the influence of mental health on the experience of dying for patients and families, despite an estimated 20% of adults thought to be living with mental illness. Perhaps this is because our tools are so limited. If my mother's complex issues could have been managed better, would her end of life have been less anguished? I will admit that if multiple caregivers over many years had consciously or subconsciously downplayed her psychiatric burden, I had not exactly taken it on either.
I could have made a case to pursue guardianship, given my mother's fluctuating decisional capacity. Ten days before her death, despite barely making it up three flights of stairs to her apartment, she applied for a passport and overdrafted her bank account booking a European luxury cruise. But I was having enough trouble coping with emotional whiplash to risk making things worse. I was striving for moments of meaningful connection, and we had some of those. So I chose to make minute-to-minute decisions, place instinct over intellect, and hope for the best. I learned that guardianship decisions are not cut and dry for a child taking care of a parent.
She liked her oncologist, at least the one she kept after firing the others. Yet no doctors seemed to recognize that paranoid thinking had led her to conceal family and nearly die anonymously. Her oncologist, resolutely committed to keeping her alive, did not realize she had any children until I called, and then I was a liability. “We could be taken to jail” I was told by nervous office staff (thanks, HIPPA). It was a numbers game: counts are up, treat… counts are down, follow… Everyone did what they'd been trained to do. Yet the connection between my mother's mental state and her inexorable decline could not have been more obvious to me. Her kitchen drawer overflowed with unopened bottles of chemotherapy.
I lobbied for hospice care when I could. She at first thought hospice meant rehab but haltingly came around to the idea. At one point she stated, “I don't have time for that right now.” She never saw the irony in that. Incredibly, she kept up her usual routines despite triple-digit white counts and debilitating pain from erythromelalgia. Eventually she became too weak to walk. She called a hospice nurse who summoned firemen to break in since she could no longer get to her front door. Lying on the floor, she somehow convinced them all to leave. The next morning she arranged to be admitted to her favorite hospital.
Days later I had a frantic call. “They've got me at hospice, they call it hospice but it's a fraud, they're torturing me, you've got to get me out of here!” I raced back to find my mother at an upscale facility where I knew she was fortunate to have been accepted. I told her it was a good place, which seemed to help. She directed staff to disconnect the television cable from the wall because she was being watched through the monitor. She was generally not cooperative, and the hospice social worker told me they would have to discharge her if they could not document the necessary level of care.
Discharge her where? To the walk-up apartment with a kicked-in door hanging by a hinge and a lit flashlight still staring out from under her bed? She had become a disposition problem. Of course the resolution was that she would not survive. On the third night she developed terminal respirations. I waited for her final breath, trying to process my own storm of emotions.
Those last few days my mother remained in agony—albeit a medicated agony. Intravenous medications prevented her from crying out but did not calm her soul. She did not find peace at the end of life any more than she found peace during life. Finally came the relief of no more suffering, no more physical or emotional torment, no more chances for either of us to make things better or worse. Her last discernible words: “We all make mistakes.” I came to a somber realization that the dying process does not confer peace, despite appropriate use of pharmacologics. Those who can find peace at the end surely leave the rest of us the gift of knowing it is possible.
In her dying moments, in and out of delirium, she murmured, “I'm so alone.” That was more tragic to me than losing her. There was no prospect of closeness, of shared grieving, of a relationship breakthrough. Inescapably, her death experience had been shaped by unmanaged mental illness as much as by acute leukemia.
Many of us will be called upon to support a dying parent. The cliché “be the child not the physician” falls short, since we are both. My words and actions were not flawless, and I often remembered the phrase attributed to Voltaire: “Perfect is the enemy of good.” I did not find it necessary to abandon my physician identity while caring for parents. I did learn (finally) to stay out of the clinical weeds. Reluctantly, I acknowledged my own needs: I needed to visit my mother even after she no longer wanted me there, a most unwelcome challenge.
Engaging in my parents' deaths was an extraordinary opportunity to learn about them and about myself. As it turned out, being a physician was only a small factor in this primal experience. I am all out of parents. But as a parent I hope to find the peace that eluded them. Most of all, I intend to live as though I might not be around forever. I want my wife and daughters to say “he loved me, he was proud of me, he was a good man.”