It’s hard to avoid hearing about the health care mess; it’s all over the media, especially as it pertains to end-of-life. How do we even define that term anymore? This phase of our lives can extend for years, under the guise of ever-treatable chronic and increasingly debilitating illness. We also know, too, whether though observing the experiences of our parents, friends or other close relations, that the good old days of dying swiftly and specifically, “dying in peace” - as opposed to the prolonged and often pathetic dying characteristic of our 21st century - has become a vague and distant memory.

Out of this catastrophe grew the “death with dignity” movement, the banner we’ve assigned to assisted dying – growing in public approval and becoming increasingly backed by legal statutes around the world. So, although we recognize the chaos and, in many cases, the sheer inhumanity embedded in our medical treatment of advanced chronic disease in the elderly, we have not learned when or how to turn off the machine and simply allow people to “die well,” a phrase coined by Dr. Ira Byock, renowned in his field of hospice and palliative medicine.

For many of us, and particularly for physicians, a gentle and natural letting go into death is anathema. Death is perceived as the ultimate enemy, necessitating every possible medical intervention to keep it at bay for as long as possible. And we can forget about the phrase: “for as long as humanly possible,” since most of the invasive procedures to extend life can hardly be considered humane, if buying a few extra weeks or months renders a quality of life unfit for even the lowest creatures on the continuum.

Trying to grasp onto some semblance of control, in an out-of- control system, people are advocating for the right to choose when and how to die. But maybe there are other ways to address the fear and aversion that seem to be at the root of the death with dignity movement. Maybe if we understand the driving forces behind the current health care paradigm for our infirm aged population, we can better engage with the system itself, whether we are advocating loved ones or for ourselves, when it becomes our turn to enter this quagmire of ethical dilemma aka end-of-life care in America.

Sharon R. Kaufman, a medical anthropologist, has offered some valuable information in this context. In her recently published book, Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line, Ms. Kaufman explains what she has identified as the four “primary drivers” behind the current medical system. This essay is my attempt to summarize her work as it specifically applies to end-of-life care and the decisions that define how we die.

In the parlance of current medical lingo, “evidence-based medicine” is probably the most ubiquitous. Simply put, this means that most hospitals and physicians rely solely on treatment that has been proven beneficial through quantifiable medical research. This is driver #1.

Medical research is conducted through clinical trials, largely funded by the pharmaceutical industry, and these trials are growing exponentially. Drug companies hold high status in our consumer marketplace – one evening’s worth of television commercials will substantiate that. They can easily afford to subsidize these trials and are eager to do so, with a capitalistic verve that is hard to match…or control.

Once a treatment protocol has been documented as beneficial, it is most likely to be approved by Medicare. (In recent years, Medicare has made efforts to better define the parameters of “beneficial” with regard to a decrease in patient’s symptoms, improved quality of life, and an increased life span.) Driver #2.

Now that our drug, mechanical device, surgery, etc., has been approved by Medicare and is 100% reimbursed by Medicare, physicians will recommend it to their patients. Driver #3.

And this is how treatments, many of which were originally considered extraordinary measures, such as kidney dialysis and mechanical assist devices, have evolved into what is now commonly known as “standards of care” - appropriate and necessary care, which, when recommended by physicians, then becomes difficult for patients and families to refuse. Driver #4.

Ms. Kaufman introduces us to the term “post progress,” which she suggests is what we are facing today with regard to our medical advancement, namely that we have moved beyond the point where technology is beneficial. For example, the mechanical ventilator was invented in the 1970’s for the purpose of keeping patients breathing during surgeries. Today, less than 50 years later, ventilators are now considered ordinary equipment, easily deployed in most hospital rooms to extend life beyond its natural parameters. Thus Ms. Kaufman concludes:

“…because the desire for life and for more life is so
fundamental, the value of life has become strongly
linked to the amount of it. Thus the technical ability
to intercede becomes the moral reason to proceed.”

So where we do we go from here? If we choose to remain naïve in allowing our medical institutions, which include our primary care physicians and our particular disease-related specialists, to dictate how we die based on the above 4 drivers, then we’ll get the Medicare-bankrupting, crisis-driven, standard end-of-life care many of us have come to dread. On the other hand, if we believe we are entitled to full control over how we will make our exit, we may choose the opposite extreme, cop out of the system entirely and bankroll those barbiturates.

But as a long-time advocate of the “middle way,” may I propose that we explore a more creative pathway? First and foremost, it would be beneficial to meet and get over the biggest hurdle of all: we are all prone to aging, sickness and death. Let’s not wait until we’ve made our third visit to the ER in six weeks to accept this truth. Once we make our peace with this reality, only then we can truly utilize all our self-awareness to engage in a plan of care that will best match our values, beliefs and needs. Whether the bulk of this treatment occurs in the ICU or in our own homes, at least we will have done our homework and weighed in on the decision-making process, fully conscious and informed.

Within the medical community, it is largely assumed that it is the PCP’s (primary care physician’s) responsibility to initiate these end-of-life conversations with their patients. And because many physicians are ineptly trained in and highly uncomfortable with these discussions, there is currently a plethora of workshops and materials designed to get these docs up to speed. Personally, I think it’s yet another example of a misappropriation of resources and responsibility – once again assigning the role of authority and initiative to the doctor. Each and every one of us has the potential, and ultimately the responsibility, (after all it is our life and death we’re talking about here…not theirs), to ask the right questions and to get the answers we need in order to fully understand the scope of the choices available to us.

It is not unusual these days for parents to create “birth plans” for the hospital staff, in anticipation of labor and delivery. And as plans go, sometimes they work and sometime they fail. But at the end of the day, we’ve given it our thoroughly researched and thought-out effort, well in advance of the first contractions. If we could be as equally engaged and proactive in anticipating our decline as we are with our children’s births, maybe our endings would be less shrouded by suffering and more enveloped in peace and well-being. Investing our energy in such an approach not only benefits ourselves, but also our loved ones, who also have high stakes in how we die, as well as the Medicare system itself, which simply cannot keep subsidizing astronomical heroic measures in exchange for questionable gain.

The capitalistic greed of the pharmaceutical/medical technology industries, fed by our culture’s pervasive fear of death, has contributed greatly to our present healthcare debacle. The courage to face down our mortality could go a long way in not only redistributing how Medicare dollars are spent at the end of life, but in stabilizing the entire healthcare system as a whole. As a culture which has become widely recognized around the world for its aversion to aging, sickness and death, maybe it’s time to drop the façade.

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