The term “death panel” entered the political lexicon in 2009, during the contentious debate over the federal government’s role in healthcare. It has lingered in the subconscious of politicians and bloggers ever since.
After 2009, it entered the electronic afterlife called the Internet. Today, it has an 18-page Wikipedia article that has continued to be updated through March 2017. It is a contentious term that has been alternately called the “death panel myth,” “lie of the year,” and even “the most outrageous new term,” as labeled by the American Dialect Society.
All criticisms of the term, however true, false, or well-intentioned, ricochet tangentially off the real problem. The arguments against and for the term are misguided, and missing an inconvenient truth: for the many people fighting a rearguard action against end-stage disease death is not the enemy – unnecessary suffering is the enemy.
We are biologically designed to die; all of us will die. The author Atul Gwande in his best-selling book, Being Mortal, wrote that death is the enemy. But the enemy has superior forces.” Or as Jim Morrison more poignantly put it, “no one gets out of here alive.” But being alive is more than just not being dead.
Being alive is about having a life, about being loved, about loving, about being with family, friends, and even pets. Medical ethics demand that physicians use their therapeutic knowledge and skills to “achieve good” and to “do no harm.” All treatments and all care have as their goal to restore the patient’s life – to return home, to be a family member, to experience love and loving.
Doctors and physicians truly do fight against an enemy with “superior forces” – and at some point, it stops being a fair fight. Eventually, it becomes impossible to save a patient’s life. Then, often a patient is alive, but does not have a life. At this point, biological death becomes inevitable, and the goal should become to ameliorate suffering, not preserve an irrevocably fading life.
While it is axiomatic that suffering is unpleasant, we learn from the first splinter pulled from our finger that it may be necessary. At an equally early age, we know that getting punched in the nose is suffering of an unnecessary kind. Suffering must have a point, or else it is just torture. When death is inevitable, it is no longer the enemy; the foe becomes pointless suffering.
So what does a term coined in 2009 have to do with 2017? Again, it’s all about unnecessary suffering – preventing it or allowing it. In January 2016, Medicare added payments for advanced-care planning to the Medicare Physician Fee Schedule. The goal was to reimburse physicians for counseling patients about their diseases, reviewing their prognoses and their likelihood of dying, and the relief of their suffering.
The rate of payments for the first six months was reported by Medicare to be $16 million, far exceeding their expectations and budget. For providers in the palliative care and hospice communities, this was a heartening finding – ever-weakening patients locked in a wrestling match with an ever-stronger foe could get a respite from their suffering. They could spend their time at home, with family – and they would most importantly regain some control over their lives. They would make the last choices for their life, not their disease.
Some, as it turned out, were disheartened, which brings us back to the “death panels.” One year after the new Medicare payments were authorized, a bill was introduced titled the Protecting Life Until Natural Death Act. The intent of the bill, according to its sponsor, U.S. Rep. S. King (R-Iowa), was to eliminate Medicare payments to physicians for “yet another life-devaluing policy.” The bill’s author interprets Medicare’s payment for advanced-care planning to be an action to “allow the federal government to marry its need to save dollars with the promotion to of end-of-life counseling … (which) is not in the best interest of millions of Americans who were promised life-sustaining care in their older years.”
While at first glance this bill appears to be misguided, it is really simply misinformed. The bill’s author focuses on death as the “enemy” and worries about new 2017 “death panels.” But if they instead understood that end-of-life suffering is the true enemy, they would embrace “suffering panels” and not raise the specter of “death panels.” We do owe Americans “life-sustaining care” when it can restore a life, but when care only keeps Americans alive to suffer unnecessarily, we owe them comfort, we peace of mind, time with family, and the dignity to choose how and where they die.
More than being misinformed, this bill is actually more uninformed, because the experience of unnecessary suffering, of having a life without being alive, of dying in a bed that is not your own, of going bankrupt to save a life that is already lost, is only experienced by a few: the patient, the family, the caregivers.
The paradigm of dying in America is changing. The hospice movement started more than 50 years ago; palliative care is now a medical specialty; and POLST (physician’s orders for life-sustaining treatment) forms are available in almost all states. We are, however, a long way from ensuring that all the sick whose disease trajectory only leads to the grave are freed from the burden of unnecessary suffering at the end of their lives.
Words have power, and our discussion of how we care for those who have lost their battle with disease is impacted by the words we use. When medicine cannot cure, it must comfort. So we must start by telling the truth: that our patients who are facing their inevitable death do not fear dying as much as they fear being alone in a hospital bed. They fear not being with loved ones, and never again being with their pets. We need to talk about and act to alleviate meaningless suffering; we need to ensure that those still alive have as much of a life as humanly possible.
Most importantly, critically importantly, the obligation of those caring for the dying and passing laws about the dying should be to provide hope in a hopeless situation. Hope for the hopeless comes from truthfully explaining dying, truthfully managing expectations, and faithfully assuring them that we will comfort them until the end. Death should never be a surprise to the dying. It is long past the time to put an end to unnecessary suffering, and if there must be panels, they should be about relieving unnecessary suffering and not preventing inevitable death.
This issue is not one to sloganeer about, but if there is to be a slogan, let it be this: death to death panels.