Abstract
M
Once upon a time he was the gentlest soul imaginable, never a harsh or cynical word, exceedingly patient, a generous listener, and a friend to all.
Which made it all so bewildering when my gentle father grabbed a kitchen knife and threatened the caregiver we had hired to keep him from wandering out of his apartment at night. That midnight I raced frantically two hours down a deserted freeway to his bedside, wondering what strategy I might employ to keep him, and me, safe. I hid all the knives on a high shelf, and repeatedly coaxed him back to bed, using my credibility as his son. Inevitably he would again make a move toward the door, intent on getting somewhere else. At 4 AM, overcome with fatigue, I simply stacked furniture in front of the door, which thwarted him enough that he lost interest and returned to bed.
We finally found a safe refuge for him here in this model eldercare residence. The enclosed garden and well-trained staff have allowed him to wander day or night to his heart's content. It was the most expensive option, but I was confident that his savings would be sufficient. I knew even then that he would not have a protracted stay here.
That was but eight months ago. This midnight is different. Now he has lost the capacity even to wander, betrayed by failing brain and body, unable to heed the imperative of his prodigious curiosity. This midnight when he gets restless and tries to crawl out of bed, the staff administers morphine, and he settles back to sleep.
I have summoned my sister to share tonight's vigil with me. I am saying my “goodbyes” now. Work beckons. Tomorrow, I will again be at the bedside of the dying, as a palliative medicine physician. This weekend I have a plane to catch, a much anticipated spring break trip to Maui with my three daughters. I am quite sure my father will not be alive when we return.
My sister will stay near for the duration. My other siblings needed a few days to arrange work and travel. I assured them Dad would still be alive when they arrive. How do I know this? I am a palliative medicine physician. I have been honing my prognostic skills for 20 years.
I have employed these skills repeatedly, with each difficult turn of events, as we navigated my father's downward trajectory these last months. My ability to effectively guide these medical decisions for my father has validated my conviction that accuracy in prognostication is a fundamentally important skill for the physician.
Back on that fateful midnight with the knife he was still physically strong. However, the virulence of his dementia (perhaps Lewy Body type) was apparent even then. I knew that he would not linger for years; many months, perhaps, but not years.
Two months ago he could still walk, with an impulsive, shuffling gait. I took him on a walk down to a local taco stand. He moved along impatiently, eager to be free and independent again. In a moment's inattention, I loosed my grasp of his arm and he veered off the sidewalk and tumbled into a shrub. I was able to get him to his feet with some effort. We barely made it back to the safer confines of his care home and professional caregivers.
A few days later the care home sent him to the emergency room. He had seemed to favor one leg. The ER evaluation confirmed their suspicion: a nondisplaced hip fracture. I pondered the options. He had broken a hip before, a fracture sustained when he crashed his bicycle. (At age 87, less than a year before, he was still riding his bike!) Back then he still had the capacity to consent to surgery. His body recovered swiftly after surgery. His brain never did. In fact, his prior extremely aggressive behavior had its origins in a severe delirium induced from the anesthesia. I remembered the horrible bedside scene, in the immediate postoperative period, in which he struggled forcefully to climb out of bed, oblivious to all required hip precautions. We struggled to hold him down, on the verge of tying him down with restraints. To our relief, and chagrin, we discovered that all he wanted was the urinal at his bedside table.
With his brain in a much diminished state, I could imagine the chaos of the postoperative care this time around. And I could see just how much function he was losing month to month. I knew that a life ending complication of his dementia would inevitably emerge before too long.
The ER doctor asked me what I wanted to do. I chose to leave the hip unrepaired and had my father sent back to the care home. My siblings wondered whether they should travel out here then. But I recognized that his untreated broken hip did not mean imminent death. My father still had the strength and mental capacity to stand on his good leg and transfer to a wheelchair for meals and toileting. My demented 90-year-old grandmother lingered bedbound for three years with both hips broken, being turned from side to side, spoon fed like a little broken bird. Her dementia progressed with glacial slowness, until pneumonia, “the old person's friend,” brought an end to her misery in a matter of days.
My father's deliverance from the misery of dementia arrived a few months later. His caregivers called several days ago to report that he had lost the ability to swallow. “He chokes and coughs every time we try to feed him.” Loss of swallowing ability is the common end point for many neurological diseases. Without hesitation I instructed them: “I want you to stop trying to feed him.”
Now I could discern that his death would arrive in about a week. His advance directive clearly stated that a feeding tube was not to be placed. About a week. Terry Schiavo's body lingered 14 days after her feeding tube was removed. Her body was young and healthy. My father would not last quite that long, though neither would he slip away in a few days, as do the frail elderly or chronically ill. Armed with that certainty, I could call my siblings and assure them they could wait a few days before traveling here to be at the bedside for my father's death.
Physicians tend to avoid providing concrete answers to the question of “how long have I got?” I was taught to give patients and families a broad range of “hours to days, days to weeks, weeks to months, or months to years.” As Atul Gawande points out in his extraordinary book “Being Mortal” physicians no longer know how to answer the question “am I dying?” I believe that physicians can do better, indeed, must do better, to be of optimal service to their patients and families.
As Gawande persuasively argues, most patients prefer to die peacefully, at home amid family and friends. But few will choose that path without an explicit statement from their physician that dying is inevitable. Many conflicts about end-of-life decisions are rooted in disagreements about prognosis. Patients request FULL CODE when they believe the prognosis is good, or at least uncertain, that there is still a chance they will recover. Doctors recommend “DNR” status when they believe that the prognosis is poor. “I think you are dying, therefore, I recommend a do not resuscitate order,” is the inferred message. But stating conclusively out loud “Yes I think you are dying” is too uncomfortable, perhaps because physicians lack the confidence or skills to answer in the affirmative when a patient asks the next obvious question, “Are you sure?” In my experience, an impasse over the DNR quickly evaporates once a discussion centered on the medical facts, not preferences, and my willingness to answer without ambiguity, yields consensus about a poor prognosis.
My family's subsequent conflict at the deathbed exemplified this conflict rooted in misperceptions of prognosis. My siblings gathered at the bedside in the ensuing days, some without the benefit of witnessing Dad's inexorable decline over the prior months, some with the belief that his death was not necessarily imminent, not necessarily inevitable. Some wondered whether Dad had chosen to stop eating, a voluntary decision that he could be talked out of, rather than the expected progression of his dementia. From that perspective, the morphine that was administered because Dad was dying became morphine that was causing his death. Bedside conversations became tense, fraught with profound but unspoken emotions. “It feels like every time he surfaces for air, we give him morphine and push him back under.”
I wish that I could have remained there at the bedside, to fully explain to all my siblings my understanding of the prognosis, the rationale for the decisions I had made about dad. That might have eased some hard feelings that saw the light of day only months later. But by then I was en route to Maui, having made the correct decision to honor my commitment to my daughters. And I had been correct about my father's prognosis. When we touched down, word came that my father had died while we were in the air.