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PREPARING FOR THE WORST

7 minute read

PREPARING FOR THE WORST

END-OF-LIFE WISHES CAN be as specific as refusing mechanical ventilation, as broad as "I want you to do everything to keep me alive as long as I can read and enjoy the front page of the newspaper," or as nebulous as my father's express desire to avoid nursing home placement. But in order for these wishes to have meaning and to take on substance, they must be communicated to the family and, where they are separate, the agent. Books, journals, and films have come to popularly refer to that communication as "The Conversation" (Angelo Volandes) or "The Hard Conversation" (Atul Gawande). I use both terms, depending on how late in the course of an illness the conversation takes place. The longer the delay in starting and the less frequent the conversations are, overall, the harder they become. It is always difficult to discuss disease, dying, and death, because the issue of facing reality is routinely intertwined with dashing "hope." But having The Conversation doesn't have to be hard and, later in the course of the illness, having The Hard Conversation should not be impossible. This chapter will try to unravel this process.


HOW TO START

Before a serious illness occurs, The Conversation is always hypothetical. Once one is staring illness in the face, The Conversation can be harder to begin because now the possibility of a crisis looms. But to avoid having it is to cede control to others and to hide from reality.


Alternatively, to pursue it is to assert some control. By opening The Conversation, one is expressing care and concern for all parties involved in the decision making. If the family pursues it, they are showing that they care for the patient and want to protect them from unwanted or ineffective treatment. If the patient pursues it they are demonstrating care for their family by sharing their vision and decreasing the burden of future decision making.


There are many ways to open The Conversation. The easiest and most common is to segue from a practical discussion of a health-related matter to a deeper discussion of end-of-life goals, but other starting points include a legal perspective, a medical perspective, and finally a moral perspective. Some form of denial is always a factor in postponing the process, but it should never be delayed to "protect" the patient. Usually, the discussion gets delayed because it is easier to ignore problems than to engage them. When in doubt, one must blunder ahead, taking care to be respectful and trying to avoid a brow-beatingly specific agenda.


MY FATHER AND THE FIRST CONVERSATION

My father did not shrink from The Conversation. He did not, however, embrace it. He always approached it tangentially. We usually started it by discussing a practical problem.


With the exception of redrafting his advance directive, about twelve years prior to his death, the first Hard Conversation that was focused on my father occurred six years later and revolved around the subject of a call button. At the time, he was living alone in a single-story apartment in a residential hotel. At eighty-seven years of age, he was not yet physically frail, but he was a real fall risk. He was taking three prescription medications (for blood pressure, anxiety, and pain) that were associated with an increased incidence of falls, and he was suffering from a peripheral neuropathy (nerve damage in the legs).


We had frequently danced around the subject of safety in the apartment, especially in the kitchen and the shower. We had fitted his shower with extra handgrips, nonskid floor strips, and a waterproof chair. Then it happened, the fall I mentioned in chapter 3.


He cracked his head on the kitchen floor but broke nothing and did not lose consciousness. The result was a conversation themed around the acquisition of a safety call button, something that in principle he did not want, because at the time he was still able to get himself up from the floor after such a fall, and absent a major injury. By moving the subject from a fall and a call button to the practical reality of dealing with a fall with injury, it became part of The Conversation.


Should he be unable to get himself up, my father was adamant that he would prefer to die a painless death on the floor of his kitchen rather than call for help. I offered to describe the pathophysiology of death following an unattended household fall. I explained to him that assuming the fall resulted in painless unconsciousness, the altered mental status would be perpetuated by renal failure and death would result. My father was hopeful.

Unfortunately, his assumption of painless unconsciousness was a false hope. I explained that a painful fracture was a realistic possibility and death could be a long time coming.


A second outcome, more likely than painless loss of consciousness, would be a fall without injury, but at a time when he was unable to raise himself from the floor to a bed or chair. This is a significant social and physical development that ultimately affects everyone lucky enough to reach an advanced age. The sense of helplessness it engenders should be a warning sign to a patient trying to live independently.


It is a negative milestone. Left alone for too long, that person will die slowly of dehydration. More likely, a caretaker, friend, or family member will find them but only after many unhappy hours or days. To be unable to independently rise from the floor to a standing position is part of my definition of frailty, and its recognition is a takeoff point for The Hard Conversation.

Dad temporarily continued his resistance to a safety alert button, preferring to experiment with a daily morning call with a neighbor.


But over time this proved more cumbersome and challenging than expected. Ultimately, the dream of toughing it out on the floor of his kitchen faded, and he acquired the button. By then he had verbalized many of his end-of-life hopes.


Early in his widower status, Dad was a tough talker about "waking up dead" and avoiding hospitalization or nursing home convalescence.


To make that point, he began wearing Mom's former DNR bracelet.


We revisited the "waking up dead" theme many times and in many forms. To die in one's sléep is considered very desirable by those elderly who are emotionally prepared for death in general. The assumption is that it is painless and quick. Few give thought to the potential for seizures, aspiration, and choking that might be the actual modus exodus during the night in question or, for that matter, following a "suicide pill." Fewer still give thought to how comparatively rare this outcome is among the old but not yet disabled or debilitated.


My conversations with my sisters on this subject emphasized the agreement we shared to delay a 911 call should he be found unresponsive, but comfortable, some morning. "Do not call 911 until he is cold and blue" was our mantra. In conversations with Dad, I emphasized the unlikely possibility of prematurely dying in his sleep and his need for another plan.


The thrust of these paragraphs is to point out that several things that commonly occur in old age are often underappreciated as signs of decline but merit further consideration. When a family has to hire household help to protect their loved one, when an elderly person is unable to pick themselves up from a fall, when a safety call button is considered, and when the "waking up dead" desire is expressed, it’s tempting to dismiss them as mundane developments. These are not mundane. They are in fact important developments and ideal opportunities to seize for beginning The Conversation.


TIME LINE FOR THE CONVERSATION

Whenever it takes place, The Conversation changes along a predictable time line. As time passes and disease progresses, The Conversation becomes more complicated and more detailed. Early in life it is a hypothetical issue and is framed by the creation of a simple advance directive in young adulthood. Later in life it's revisited at the time, of a medical issue or hospitalization. Finally, late in life, it becomes The Hard Conversation with the realization that the specter of death looms large.


Though the difficulties associated with The Hard Conversation increase with the proximity to death, the more frequently the discussions occur throughout life, the easier they are, in general. The later the discussions occur in the trajectory of an illness, the harder they are to initiate because they are now intertwined with the actuality of death and the end of hope. But the closer to death these discussions occur, and the more frequently they are reviewed and revised, the more power and influence they have to assert your control over the process of moving toward a more peaceful death.


Pp. 157-162. Excerpted from "At Peace: Choosing Death After a Long Life" by Samuel Harrington. Published by Grand Central Life & Style. Copyright 2018. 

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