My father, a retired surgeon, died a “good death” about a year and a half ago. He died in his own bed, on his 90th birthday, after a day of visits from family, friends, and the occasional four-legged critter. I will be eternally grateful to my aunt (an RN) for facilitating this. Although I hated to lose him, I thought his death was as good as it could have been, and it was certainly what he wanted. In fact, physicians overwhelmingly chose to forgo CPR and life-sustaining treatments, including hospitalization and intensive care, at the end of life. For example, a recent study found that 88.3% doctors chose do-not-resuscitate status. The authors noted, “Our study raises questions about why doctors continue to provide high-intensity care for terminally ill patients but personally forego such care for themselves at the end of life.”1
I can’t help but contrast the way that doctors chose to end their lives with the many prolonged, agonizing and expensive deaths that I witnessed over many years of attending in the ICU. Anyone who has worked in an ICU is intensely aware that many patients who clearly have no chance for meaningful survival are subjected to painful procedures, incredible expense, environmental chaos, and separation from the people and things they love as they are dying.
Why is this? At the risk of being overly simplistic, I think there are 3 main factors at play here: lack of time, fiscal incentives/disincentives, and lack of leadership.
To some extent, the practice of medicine is about time management. Nobody wants to wait to see the doctor, and operating rooms, clinic schedules, procedure suites, and conferences need to run on time. Sitting down with a patient who is beginning to decline, to talk about options and likelihoods and to make recommendations, is uncomfortable and time-consuming. It’s also very unpredictable, and not easily scheduled as a 15 or 30 minute session, because of the intensity and variety of human response to discussion of this inevitable part of life known as death. It almost doesn’t seem like medicine, and it’s not easily reimbursable. It’s very understandable that the doctors who deal with patients prior to their final hospitalization delay or avoid these difficult conversations, and this behavior will likely persist as we further fragment care, with primary care providers handing patients off to hospitalists and intensivists at the end of life.
A second consideration is that our system of health care reimbursement currently rewards doctors for doing things, not for not doing things. For now, doctors get a lot more money for doing tests and procedures than they do for sitting down and having difficult, unpredictable conversations with patients and their loved ones. There is hope on this particular horizon, however. With passage of the “Doc Fix” this summer, changes in reimbursement based on patient outcomes, rather than payment for procedures, will be slowly phased in.
Finally, although time and money are very important factors in the disconnect between how doctors would prefer to be treated and how they treat patients at the end of life, I think a third and perhaps more important factor is lack of leadership, on several levels. At the first level is lack of leadership with regard to care of an individual patient by an individual physician. The physician is (still) the leader of the team, and everybody else takes cues from him or her. When the physician ignores the plight of the moribund patient and presses ahead with inappropriate interventions, the entire team is compelled to follow. When the hospital administration tiptoes around the fact that many ICU beds are filled with patients who cannot hope to benefit from terminal care there, the whole hospital system follows suit. When third party payers continue to reimburse more for futile, aggressive procedures at the end of life than for palliative care, the dysfunction is perpetuated. And when our government is compelled to retreat from an attempt to address this issue at the macro level, everybody loses.
What can be done? At the patient level, people and their families need to become informed and empowered. Relying totally on the health care provider for information and decision-making about any aspect of care, including that at the end of life, is in no one’s best interest. At the payer level, reimbursement based on meaningful outcomes, rather than on volume and cost of procedures, will go a long way (and it is likely that we are moving in that direction). But perhaps most importantly, doctors need to remember the Golden Rule.
1. Periyakoil VS, Neri E, Fong A, Kraemer H. Do Unto Others: Doctors’ Personal End-of-Life Resuscitation Preferences and Their Attitudes toward Advance Directives. PLOS . DOI: 10.1371/journal.pone.0098246
By Barbara Phillips, M.D.