In an ironic turn of events worthy of a novel, my mother died four months after I finished writing Good in a Crisis, my memoir about loss. Consequently, I found I had more to say. My sisters and I had cared for Mom during her last few years and it seemed only natural that my next book would deal with end of life issues. We had faced those issues with my father in 1998 when he died of cancer, and they frequently presented themselves in the hospital environment where I work as an anesthesiologist. As a result of this unhappy immersion, I have spent the past two years reading almost exclusively about healthcare—including the politics, ethics, and economics. I attended a nine-month program at Harvard Business School on Managing Healthcare Delivery and worked for eighteen months on a manuscript that tells our story while promoting a major economic solution—the palliative care/hospice care movement—in a way that is positive, persuasive, even funny. But the rhetoric of this election and the political climate of our country have made me believe, despite my best intentions, the healthcare situation is unlikely to be fixed. And it’s depressing.
After months of research, study, thinking, listening to individuals’ stories, and attending various lectures, my goal was to incorporate what I’d learned into all that I’ve experienced in the course of my twenty-five year medical career. I would integrate the critical time spent with my parents in hospice when I learned more about being a physician than in any given year practicing medicine at any hospital. I would write a compelling and persuasive narrative about the importance of having a well-thought-out and individualized plan as we approach our later years.
But this is a story few are ready to hear.
It is a well-documented economic fact that roughly 80% of our Medicare dollars are spent in the final six months of life. As an anesthesiologist, I take care of a lot of elderly patients during those last six months. It is also known that while 70% of Americans want to die at home, 70% actually die in the hospital or in nursing homes. So there is a huge disconnect that is occurring—patients are receiving more care than they want and are not dying where they want to die. How and why this disconnect occurs has been the focus of my research and personal experience. We—physicians—talk patients out of their advance directives and Do Not Resuscitate orders. The public doesn’t want to know that. And we don’t want the public to know that we do it. But we do it and the costs—human and economic—are enormous. The reasons are complex, of course, sometimes unavoidable, but not always. We do not analyze how often patients who did not want their lives extended by “artificial means” get exactly that. To examine how to change this requires a paradigm shift in our analysis of end-of-life care. It requires that we take a close look at how we earn our pay, at how we take care of patients, and at how we manage expectations. It requires an analysis of the earliest stages of care. More importantly, it requires that individuals decide for themselves (while healthy) how they want to die. Then they must obtain the tools to enforce those decisions. They do not have them now.
Work is being done at places like Harvard (Susan Block MD) to promote palliative care. Elder care is written about exhaustively in periodicals like the New York Times with its New Old Age blog (begun by Jane Gross). The Huffington Post has a Post/50 section. Joe Klein wrote a widely read piece in Time Magazine about the hard decisions he made for his own parents. The topic is ubiquitous. Baby Boomers bury their parents every day but before they do, they often spend years taking care of them. And while they care for their parents, they ponder the implications—financial, ethical, and logistical—of how that care occurs and what it means for their own futures. For the most part, when money is an issue, end of life care is an unholy mess. Even when money is not an issue, complex family dynamics combine with the moral and financial imperatives of medical practitioners (not just physicians) to provide too much care for too long for too many. We do no favors to the elderly by prolonging death. We do no favors to those with dementia. We do no favors to the families or to the economy. You only have to ask yourself two questions: who benefits by providing too much care? And do they have a lobby in Washington? Patients who die well usually have an advocate by their bedside enforcing their previously expressed wishes. Yes, patients change their minds, but it is often under duress and with incomplete information.
I have come to the conclusion that organized medicine cannot fix this problem, though they need to be part of the solution. The government should not fix the problem—it is far too political, too politicized, too driven by special interests. And no one who makes a profit from patient care can fix this problem. The solution must be driven by a social movement, by the consumer. My goal has been to write that book, to drop that bomb, which would demonstrate this need and lay the groundwork for such a movement by sharing my own experiences both with my parents and in my work.
But I worry the current political environment is too fragmented. Too hyperbolic. Too sanctimonious. You cannot drop a bomb into an already polarized society ignorant of the ways of health and healthcare and expect something positive to come of it. The public has become insulated from the reality of death. What happens in the hospital stays in the hospital. We in medicine have done you no favors in that sense. Because once you cross the threshold of the emergency room, the IV gets inserted and you are placed on the conveyor belt of Medical Care. You lose control and then you lose more control until you reach the point where your family must withdraw life support. Death occurs as a prolonged act of omission. But the better alternative is acting in accordance with your previously expressed wishes–a completely different process, better for all. And research supports this. Should support be initiated from the very beginning? And where is the beginning? It is usually assumed that full out Medical Care is the proper thing to do. It isn’t. Healthcare professionals can intimidate family members who question them. Because we see death as a failure, a blemish on our record, we are loath to admit that death is the final step in this process we all experience, this life.
Social movements based on common sense are going nowhere right now. And self-determination for healthcare appears to be a political football instead of a civil right. In the hospital, patients and families are talked into surgery and feeding tubes and IV’s that prolong life and suffering for weeks or months. Only the timing and location of death are changed; the outcome remains the same weeks later in a nursing home. The cost is astronomically higher; the deficit soars.
But here’s the thing: physicians take the Hippocratic oath and we declare we will do no harm. Perhaps it is past time to parse out the meaning of harm. There are so many ways to harm another. We find new methods every day. That’s the downside of technology, and standardization, and of approaching healthcare as though it’s a big-chain restaurant. It is the downside of automaticity. Non-medical people do not understand how much suffering we can and do inflict and medical people take it as a matter of course. I suggest that we stop and reorient ourselves. Medicine has taken the tack of more is more for far too long. At the end of life, and there are very clear ways to determine when the end of life is near, maybe less is more.
Above all, do no harm. Shouldn’t that be everyone’s oath?