Why we need a new approach to end of life care

Looking at how incredibly expensive the last few months of life are for anyone in this country, I think most would be quite shocked. In 2014, there were approximately 2.6 million deaths in the U.S. According to a Keiser Permanente study, 2.1 million of those deaths were Medicare related. Medicare’s annual budget is right around $600 billion, and it has been revealed that one-third of that total is spent in relation to the last six months of life. That is a staggering amount of money. What does this say about our approach to health care and quality of life in general?

Fact: Everybody dies. No matter what, no matter when, no matter who you are, how rich or poor, famous or unknown, everyone will meet their end at some point. Death is thus a front-and-center reality with which we must more effectively contend.

Questions concerning the ethics and even the legality of death often arise within the medical field. Just about everything we do in medicine has legal implications, with a looming cloud of concern for malpractice. You simply need to look at the out-of-control cost of the insurance policies that practices and hospitals must have in place to realize this. When death is the outcome, everybody raises questions. The committees review the cases, families sometimes question the outcome itself, and some relatives may even seek potential financial gain from it.

In many ways, medicine has correspondingly become a treadmill. Everybody runs on it, no exceptions. Following protocols and stringently abiding by proscriptive “standards of care,” this is what constitutes the treadmill mechanism. We keep going even though in cases of end of life circumstances for instance, and such standards really have little efficacy.

“We must bring the patient back!” This is our across-the-board mantra regardless of the patient’s condition. What about those cases where procedures have been performed for essentially terminal patients who were unlikely to benefit from such intervention? I have also been witness to cases where the surgeon has said, “I cannot in good conscious perform this procedure because it won’t change your outcome.” The patient is thus transferred to a university hospital where higher risk operations and high mortality are a more acceptable end result.

In the legal context, the resounding question is whether or not “standards of care” were followed. In other words, could anything else have been done to save this life at that time? The humanity or lack thereof is beside the point. When did the real, “final” death occur and why? The patient part of the equation is overshadowed by statistical and protocol-driven methodologies. To this end, doctors are often trying to postpone the inevitable at any price in order to comply with the legalities they are facing.

In the desperate effort to save lives regardless of quality of life, what becomes of the patient? What price does the patient end up paying? Severe disability, permanent brain damage, chronic connection to a breathing machine, inability to perform any meaningful activities or communicate with loved ones, this is the potential fallout from adhering to unremitting standards of care without regard.

Patients don’t want to be in this type of vegetative scenario. I’ve heard time and time again of the plea: “I do not want to become a vegetable.” And what of the burden on the family? Generally, they cannot provide around-the-clock care for the patient, who is often sent to a nursing home facility where many times we keep completely disabled (if not comatose) patients alive for numerous years, sometimes decades.

This begs the question, what exactly does it mean to be “alive”? For instance, survival after a cardiac arrest is measured in terms of being “alive,” where alive signifies breathing and sustaining a beating heart. It could also only refer to the beating heart portion, meaning patients are connected to a breathing machine indefinitely. Mahi McMath, for example, has been technically brain dead for three years and yet is deemed and subsequently kept “alive.” Our society seems to be okay with these statistics, while ostensibly turning a blind eye to quality of life.

The toll that this takes on doctors is not negligible either. They pay a high personal and emotional price when participating in end of life care. Currently, there are no standards for favoring a “peaceful end of life,” except in those instances in which all procedures have been performed and exhausted. The concept of a doctor’s best judgment is losing steam. The “art” of medicine is virtually nonexistent as protocols, and military regime-like rules dictate almost every move a physician makes. It is favored to complete a procedure or therapy rather than having to defend why these were not performed in the first place.

We need to start thinking about what we are doing to patients, and to ourselves as doctors as well. What about the broader issue of our economy, our entire system? When human lives are at stake, emotions often run high, personal experience steps in and rational judgment is tempered by sorrow and grief. But end-of-life care needs to be planned practically, in accordance with the patient’s best interests and desires. Unnecessary procedures should be decreased or avoided. The human side of practicing medicine should be what ultimately guides us. Consider “the cycle of life”: No matter how hard we try, we cannot escape death; in fact, some might say that we have a right to it. Dying is not a sin, it is an unavoidable outcome. I suggest that the possibility of somehow timing this event only in an effort to prevent or ameliorate suffering is a necessity. Dying with dignity and without unbearable pain, I consider a human right.

Sebastian Sepulveda is an internal medicine physician.

Image credit: Shutterstock.com

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