A recent blog post and series of responses on the KevinMD weblog aroused my interest. Dr. Kevin Pho posed the question: Why are doctors so reluctant to discuss end-of-life care? Responders, including patients, doctors, nurses, and even a veterinarian highlighted the stress inherent in this discussion for patients and for medical professionals alike. To me the real issue is not whether the discussion should occur, because clearly it should, but when and how? The topic can be very sensitive for a patient who may perceive that their physician is "giving up" on him or her, or that the physician believes that death is imminent.
What constitutes a discussion of end of life care? Though there are many facets to this discussion, amongst health care professionals it most commonly refers to a discussion about an advance directive, a written document stating patient preferences for treatment and designating a surrogate decision-maker, should the patient become incapacitated and unable to communicate. The two primary components are also known as living will and durable power of attorney for health care. In 2007 Georgia enacted legislation replacing Living Will and Durable Power of Attorney for Health Care with the Georgia Advance Directive for Health Care, which combines elements of these two previous documents.
I admit that in my own practice I often do not broach this topic, particularly with young and middle-aged patients, because of my personal biases, believing that most healthy people, when asked, would want (as I would) to be offered all life-sustaining treatments unless there was no chance of meaningful recovery. But admittedly this thinking is likely flawed. Certainly there are healthy people who would want surrogate decision-makers other than their next of kin, thus the discussion becomes important.
What is meaningful recovery? Can this really be spelled out in the form of an advance directive? I am somewhat skeptical. I believe that one has to know a person really well in order to understand that person's concept of meaningful recovery. I personally feel that the surrogate decision-maker part of the directive is much more meaningful in clinical practice than is the living will portion. That being said, I am a strong proponent of encouraging patients to discuss these issues with their family members, who are the ones who will likely need to come to consensus in times of question regarding the direction of end-of-life care. If filling out an advance directive document facilitates this discussion with your family and your physician then the process in itself is as beneficial as the document.
Can doctors be taught to talk to patients about end-of-life issues? I was fortunate to participate in a medical school curriculum for this at Emory University, published by Dr. Alexia Torke and Dr. William T. Branch in the Journal of General Internal Medicine. Workshops with role-playing exercises may be helpful in teaching medical students strategies to ease these discussions.
As with many aspects of medical communication physicians should be culturally sensitive when discussing death and dying with patients. One study of impoverished African-American patients at the end-of-life highlighted the importance of understanding spirituality to grasp this population's view of death and dying.
The whole concept of "advanced directive" seems a very American notion, accepted especially by those of higher socioeconomic status, but not well understood by those of other cultures, who may feel it's up to the doctor to make recommendations, or who may have deeply spiritual beliefs about the nature of death and one's ability to orchestrate it.
So I take it back to both doctor and patient. Doctors, assess your patients' views about end-of-life of care and provide them with information about advance directives; and patients, think about these concepts on your own and with your families and surrogate decision-makers so that when the time comes we are all on the same page.