In order to achieve a peaceful death, patient-families, that is all of we citizens, actually need to do something. “Something” is a range of things comprising a bit of study and contemplation. I’ll share what I consider to be the most important aspects.
1. Become familiar with how we die in a technological society. Joanne Lynn summarizes the 3 basic trajectories representing, essentially, cardiac, cancer, and cognitive failures. Each trajectory is well-known (to providers) and unique from the others: cardiac is characterized by repeat downward spikes and recoveries; cancer by a generally sudden decline, and cognitive by the long slow decline. Until we recognize where we or family members are on the pathway, we’ll be caught by surprise in the crucible of what may turn out to be a terminal hospitalization. By definition, this is the antithesis of dying peacefully (see point 6 below). This includes understanding how death unfolds in hospitals as per Sharon Kaufmann (…And A Time To Die).
2. Understand the nature of applied resuscitation technology. This is a huge aspect that, in my experience, providers remain mute about with respect to informing patient-families. Lay people involved in our first or second family members’ demise think of resuscitation technology as exactly that: life-saving under duress. Clinicians use life support technology in two other ways: standard operating procedure during surgery, and treatment whenever they deem it so. SOP is relevant regarding the suspension of DNRs during surgery (required) and post-op for periods ranging from 2-48 hours depending upon the institution. This is generally fine but undisclosed until a surgical release form is presented—way too late in a treatment plan to qualify for informed consent for patient-families who may not want full-bore treatment. The real slippery slope is when life support technology morphs into ongoing treatment. Handholds here are hard to find, let alone grasp. Full understanding also requires disclosure of first-responder constraints and certain facility policies with respect to dishonoring DNRs. Medical Orders for Scope of Treatment (MOST) and similar forms are designed to remedy some of these incongruities.
3. Clarify that the absolutely necessary step of creating a suite of what I call Power Documents, including advance directives (ADs) is nonetheless just a first step. They provide a safety net. Living with no power documents is like driving blindfolded. However ADs are to a peaceful demise as clear skies were to the Titanic: a false sense of security. The iceberg lurks below depths and it’s all to easy (and common) to crash into it in the crucible of an apparently sudden terminal hospitalization where we end up trying to parse advance directives given new realities. Personal work around ADs is not in their creation but rather when interpreting and using them. ADs are a legal necessity and a midlife abstract starting point. ADs in advanced age are likely to serve as personal Constitutions.
4. Recognize when heroic action really begins. If we give zero thought to the matter, when in the crucible of a critical hospitalization with terminal overtones we’ll tend to hang on too long to curative efforts. I’ve been there—twice, with each of my parents. This is a helluva time and place to first deal with the nature of heroic action (I call it heroicism, a lesser form of heroism). If one considers the dying trajectories mentioned above, it’s easy to see—through felt experience—that heroicism begins years or decades earlier, when we first engage in cure for serious conditions. Just because mighty treatments are everyday events in the clinic and more or less mundane (heart repair) doesn’t mean they are non-heroic for people undergoing them. My father’s period of heroicism began 19 years before he died, with his first bypass. This, in my ponderings, is a profound aspect of “doing something” to increase the likelihood of dying in peace. Understanding heroicism is basic math; choosing how to die is advanced calculus. Yet no one teaches or learns the basics, so of course we suffer, patient-families and clinicians, with almost every death.
5. Distinguish between suicide (the taking of a viable life) and patient-directed dying (Tom Preston’s most-apt phrase) or physician-assisted dying (Compassion and Choices’ phrase, less apt in my opinion although I understand the impetus for choosing it). Reject the phrase “physician-assisted suicide” for devising and choosing a peaceful exit when terminal. Definitions of terminal may vary in terms of prognosticated time left (a highly inexact forecasting).
6. Stop enabling medical paternalism. Americans give mental lip service to the iconic notion of independence but refuse to do the work related to enabling our own peaceful demises. Until citizens belly up to our own end of life bar we will require provider paternalism. Providers, under their own duress (they’ve seen hundreds of times what we first encounter and experience a handful of times) try to pick up our slack—and bless ’em for their inclination. Here we have a terrible double-bind: providers know we all must talk, and feel the conversational vacuum so strongly that they are now trying to take on the added burden of initiating The Talk. On the one hand, medical/ethical disclosure requires this—and I believe providers shoulder 51% of the responsibility to talk because they are more experienced than patent-families. On the other hand, patient-families (that’s all of us) actually have 100% responsibility to initiate The Talk—after all, it’s our lives and deaths. By willfully denying every aspect of dying and death we present as grown babies. This spans the generations, from 20-somethings to 50-somethings to 80-somethings. So doctors’ double bind is that they’re dammed if they initiate The Talk and dammed if they don’t. My heart goes out to them even as the slow burn of my experience of my father’s hospitalized demise continues to stoke this advocacy work.
©2010 Bart Windrum and Axiom Action LLC. All Rights Reserved.