"I suppose I should get a living will," a physician with metastatic cancer told me a few years ago. "But I haven't." Sadly, he died a few weeks later, never having signed one.
"If I keep working as hard as I can," another doctor with a serious disease recently told me, "I won't get sick myself. I won't die."
I spoke with these physicians and many others when writing a book, When Doctors Become Patients. When confronting the possibility of death themselves, they often feared and denied it -- as did their patients. We doctors often hide behind our white coats, but we fear death just as much as our patients. To expose our vulnerabilities is not easy. The topic of dying makes us all uncomfortable. We resist these topics in large part because of deep existential fears. The unknown void of death terrifies us. Hence, we eschew the subject, refusing to discuss it.
But improving discussions between doctors and patients about death and dying can help us in many ways.
As Ernest Becker and Jessica Mitford forcefully illustrated in their books Denial of Death (1976) and The American Way of Death (1963), respectively, we as a nation don't deal well with death. We have preferred to see ourselves as a youthful, "can-do" country. Slowly, palliative care has spread in the US, but we still lag far behind Great Britain and several other countries in its acceptable use.
Here, 71 percent of Americans don't have living wills, and 61 percent don't have a health care proxy, a named person who can make medical decisions on another's behalf if the latter is incapacitated. As a result, countless patients remain wholly unresponsive on ventilators, with neither dignity nor hope.
In addition to the human degradation involved, there are, unfortunately, financial costs as well. In the US, an individual is estimated to incur over half of his or her lifetime medical expenses in the last two months of life, and 40 percent in the last month alone.
Hence, last year, President Obama, as part of his health care reform, proposed initiatives to try to improve discussions between physicians and patients concerning end-of-life care and advanced directives (i.e., documents expressing our wishes as to whether "extraordinary measures" should be taken at the end of our lives, in case we are unable to state our preferences at that time). Sarah Palin and other conservatives twisted this possibility and accused Obama of establishing "death panels." Given this opposition, Obama dropped his suggestions from his health care proposals.
That is unfortunate. His health care reform bill has now become law without it.
But, I would argue, we now need to revisit the issue of enhancing discussions of end-of-life care. Addressing these issues more fully can help us in many ways. But these are not easy issues. We will need to acknowledge these fears and face them rather than bury and deny them.
Luckily, wisdom from the past can aid us. For millennia, from Buddha to Job and Jesus, to Kierkegaard and Dostoevsky, thinkers and writers have wrestled with how to accept our mortality. Death and dying are intrinsic parts of life. To acknowledge that fact can potentially aid us spiritually in living our lives.
"Live each day as if it may be your last," Seneca, the Roman philosopher, urged. "After all, it may be." We could die tomorrow crossing the street or driving a car. That awareness could impel us to live each day as fully as we can. Thus, he argued, stoicism and epicurianism (living each day to the fullest) were in fact almost indistinguishable.
Unfortunately, today, our avoidance of these topics has taken on new costs. The status quo clearly incurs great, unnecessary suffering and inhuman treatment of terminally ill patients -- keeping them alive but utterly unresponsive, on machines. Financial questions also arise. Given that we as a society have limited health care resources, how do we want to spend them? Do we want to use most of our health care budget on only the last two months of our lives? I would argue that we at least need to discuss these options rather than simply avoid or prematurely shut down the debate.
Obama cast this debate as a financial one. In trying to expand health care coverage while keeping costs as low as possible, questions arise regarding whether money can be saved by better approaching and discussing end of life care. But the advantages of these conversations are far more than economic, involving deep existential concerns, as well.
Still, what are the economic facts?
A few studies have explored the economic effects of advanced directives. On the one hand, the "Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment" (SUPPORT) suggested in 1995 that having a nurse document end-of-life care preferences in the charts of very sick patients did not reduce hospital costs. Some scholars therefore concluded that no costs would be saved. But on the other hand, the "Asset and Health Dynamics Among the Oldest Old" (AHEAD) study, by Howard Degenholtz and his colleagues at the University of Pittsburgh, suggested that having a living will was associated with dying at home rather than in the hospital, thus greatly reducing health expenses. A 2000 Ontario study in nursing homes similarly found that advanced directives reduced hospitalizations and costs.
To diminish the priceless sanctity of life is anathema. Yet costs frequently burgeon not because patients want to be kept alive on artificial life support, but rather because no one spoke with them and/or their families beforehand to find out and clarify their wishes -- whether through a living will or other discussions.
Families don't want to face these issues, either. Hence, conspiracies of silence ensue in which no one -- neither the patient, nor his or her family, nor the physician -- wants to pursue the topic. Hence, they avoid it or talk about it cursorily.
Unfortunately, these conversations need to be detailed. A patient may sign a living will in the office of his or her doctor or lawyer, without any family discussion. Yet the conversation -- the expression of values, desires, fears, and concerns -- is arguably more important than the particular boxes checked off on a generic form.
Once a physician raises the topic, though, patients and family members are usually not surprised. They have watched ER, Scrubs, and other TV shows and have usually thought about these issues to themselves.
Doctors, medical educators, patients, loved ones, and others need to change the culture of medicine, to confront these issues, to accept that in the end we all die. We need to discuss these issues more -- particularly with patients who are elderly or have serious illnesses -- earlier rather than later. Medical schools are beginning to address these issues, but especially in the current economic crisis, such efforts are under-funded, inconsistent, and often given little heed.
Ultimately, policy makers need to reconsider ways of facilitating these discussions through public, patient, and provider education campaigns. More education can help current and future doctors and patients in grappling with these issues. We also need to work to shift our culture more broadly. Many people see death as failure rather than as an intrinsic part of life.
Our nation now faces not only profound economic and political crises but spiritual, existential, and moral ones, too. As we march ever further into the 21st century and medical technology burgeons ever more, we can benefit from pondering these wider questions. And as American world hegemony appears to ebb, we confront a unique opportunity to examine ourselves. Might our worship of success and our horror of failure and death diminish, as well? These questions invoke larger topics that deserve far more exploration and discourse, beyond the limited space of this post.
But we can begin this dialogue today.
"I now talk to my patients more about death and dying," another physician, with cancer, told me recently. But it took her own illness for her to change. Hopefully, as doctors and patients, we can work to discuss these issues better, before having to confront fatal disease ourselves.
Robert Klitzman, MD, is a Professor of Clinical Psychiatry, and the Director of the Masters in Bioethics Program at Columbia University.
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