In a bewildering scene: Redefining heroicism at the end of life

Bart Windrum's excerpt:
Heroicism lies at the root of the efforts we engage in to extend life. Without much questioning, we consider heroic activity to include resuscitation efforts, plus all those activities during those last weeks of life in which we pull out all the medical stops in the hospital. This "heroicism" invokes all the forces that make this time and this experience a crucible: all the emotional, spiritual, religious, medical-technical, moral, legal, and financial factors commingling in a compressed time frame.

As we've seen, the patient-family is caught up in a bewildering scene, subject to the array of problems unique to this time and place. We've explored those problems'' severe consequences.

Why engage in heroics? The obvious answer is because we don't want to die or our loved one to die. But why not, if we, if they, have lived full lives?

Less obvious answers relate to the role we give to heroicism in our lives. We may believe that it's our duty to fight to live. Some subscribe to religious beliefs regarding the sanctity of life, which governs the choices deemed acceptable.

Common to these beliefs is the largely unexamined notion that the only time and place constituting heroic action are the very last weeks of life under end-stage conditions. That's when we will engage in heroic activity to satisfy the requirements we believe we must satisfy.

But what if we have already satisfied those requirements? What if we've already acted heroically and have done so for years, perhaps decades?

I propose that the weeks of a terminal hospitalization are not necessarily the time for heroics. These weeks are beyond any requirement for heroicism. They represent a final phase of life, the transition to death (if we let it be), otherwise a time of last-ditch craziness if we pursue medical technology in a hospital setting. Medical professionals use the concept of futility. Futile it may be; crazy-making it most certainly will become.

The very good news is that accepting a reframe of what constitutes heroics does not deny heroics, for we have already engaged in heroicism! We've engaged in heroic action from the moment we first fight back against our first serious ailment!

Heroics begin when we undergo our first cardiac bypass. Or hip replacement. Or dialysis treatment. Or chemotherapy. We do not give up or give in.

No matter how ordinary any of these representative procedures (and others of similar extent) may be for professionals who conduct them, they are not ordinary for individuals undergoing them. Nor are the efforts and accommodations that follow. My father's last nineteen years represent a time of increasing heroicism: a repeat bypass ten years after an earlier bypass surgery; maintenance angiograms and angioplasties; years of pill-taking, including popping the occasional nitro for cardiac abnormalities; twice-daily management of water retention by the drug- induced shedding of copious amounts of urine—a process requiring two five-hour, home-bound sessions seven days a week to stay in proximity to the bathroom (meaning that Dad's out-of-house activities were scheduled around those sessions, every day, year after year), and more.

These and similar actions are heroic actions, and undertaking them satisfies the human imperative to fight for life and to sanctify the life we are given by Creation by not giving up on it.

During these years, everyone is heroic: the patient, the spouse who assists and accommodates lifestyle changes, the doctors who perform the procedures, the scientists who create them, the chemists who develop powerful medicines, and even the pharmaceutical companies that fund and make them available.

During these years, everybody is a good guy; everybody wears the white hat, so to speak. These are productive years, during which human bonds are cemented in memory as children become middle aged and next generations emerge into young adulthood—all witnessed, perhaps assisted, by elders whose socially productive lives have been gratefully extended by applied medical technology.

Once we stop and think about it, it's easy to see the heroicism in all who persevere in these actions, year in and year out.

And one day, each person so engaged will fail. "Crash," in medical parlance. She or he will take an insurmountable turn for the worse… from living with the disease(s) to dying from the disease(s).

That day either lands our loved one in the hospital or occurs during yet another hospitalization our loved one has embarked upon. That day, we get to choose what to do, and what not to do. That day, we decide whether to pursue curative treatment and how long to continue in the hospital, running the risk of enduring experiences we may prefer to opt out of. Or, to opt out of the path itself, and die in PEACE in a humane environment under nurturing conditions.

Or, we can choose in advance, coming to grips with our ultimate demise, and coming to peace with the rest of our lives.

Do you want a hospital to be the last place you inhabit on earth?

I imagine that the bravery required to choose against hospitalization (or rehospitalization), to choose to die in PEACE, is among the most heroic actions anyone can take. For those wanting to live the value of individualism completely, choosing against institutionalized dying makes intrinsic sense.

Read a short story about another father’s end of life decision.

Thanks to Bart Windrum for permission to reprint this excerpt from his book, Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization. Bart makes presentations to citizen, business, and provider audiences.