My colleagues who advocate improvement to our healthcare often say, “It’s a non-issue. We all benefit from better care.” Yet the political vehicle that’s to drive the reform has stirred emotions and controversy at almost every turn, leaving us baffled. Why wouldn’t anyone want better coverage, lower cost, and more evidence-based treatments? These targeted goals improve healthcare, which is why they poll well. When asked for a general impression of the ACA, the average person would likely fall in line with political leanings. But when asked about the specific provisions- no more pre-existing conditions, no more rescission of coverage, 80% of money to be spent on actual care- there is majority support.
This focus on the quality of care has become increasingly easier to advocate, which is why the push for repeal has not taken significant hold. But one original provision has become game for partisan politics. This proposed provision would allow Medicare to reimburse doctors to counsel on end-of-life issues. This idea initially had bipartisan support. But when it was labeled the “death panel,” lines were drawn in the sand and people began to choose sides. As reasonable as it may be to pay for doctors to discuss patients’ end-of-life wishes, the Democrats removed it from the bill before it reached the White House. Last fall, however, it was included in a rule issued by Medicare on physician payments. This prompted the Republicans to raise controversy and the administration responded by removing it.
Many supporters of this provision say that it’s a non-issue. Paying doctors to spend time ascertaining a patient’s wishes on end-of-life care is reasonable and worthy. However, as utterly false as this label “death panel” is, it has hit a nerve and paralyzed both sides and even those down the middle. Hearing “cost savings” and “end-of-life issues” in the same medium conjures visions of a one-size-fits- all formula that calculates the financial value of how we die. As a witness to patients’ paths towards death, I find that each experience is unique. Some people want to push to the very end while others pragmatically withdraw even standard of care when they can’t discern continued benefit. I’ve seen a courageous 70 year-old woman refuse any further dialysis after undergoing years of painful procedures, infections and multiple hospitalizations. With her family (some devastated by her choice) by her side, she defined how to receive death. Then there is the cachectic middle-aged man who fought metastatic cancer until his vital organs finally failed. Not surrendering, even with his last breath, impressed on his young children enormous pride and admiration.
There is no standardized way to die but the issues are complex, politically, emotionally and financially. There are no good answers but we have yet to begin the conversation. In this country, we talk a lot about healthcare but say little about “deathcare.” Death is a deeply personal experience with which government and insurance regulations should have little say. We should have the freedom to help frame these conditions as best we can. And the very provision, which provides that personal liberty and the necessary opening to this discussion, is stigmatized. This is the sad paradox.