Recently an increased awareness of the end of life has been dawning in the U.S., as evidenced by some relatively new grassroots movements spreading across the country: Green Burial, Home Funeral, Death Midwifery, Death Café, Death Salon, Death Over Dinner, The Conversation Project, Death Expo and other internet sensations, such as the "Ask a Mortician" video series and "Confessions of a Funeral Director" blog.
Yes it seems that everywhere we look today new conversations about death and dying are occurring -- everywhere, that is, except between doctors and their patients. Studies demonstrate that doctors' willingness to talk about this difficult subject lags behind the societal trend toward more openness about the end-of-life.
For example, the Nebraska End-of-Life Survey showed that even though "70 percent of patients surveyed want their doctors to discuss their end-of-life care options, only 21 percent ... had heard about hospice care from a doctor." And according to an article published in JAMA, while 86 percent of doctors agreed that they themselves would enroll in hospice if terminally ill, only 27 percent would discuss hospice as an option with a terminal patient who had 4-6 months to live.
How can this disconnect between patients and their doctors be explained? In order to answer this question, I have informally surveyed many of my fellow physicians to understand their attitudes toward the subject of death and dying. Here are the most common responses I've gathered and the changes in mindset that I'd like to see happen:
"It's not my job. My passion is for saving lives."
This response touches my heart deeply as it echoes my own inspiration for choosing to become a doctor, when I was just 12 years old, so that I could "help people and save lives." Not only do most doctors embrace this mission of saving their patients from death, but our society, as well, holds an expectation that doctors will do everything in their power to support and spare life.
We physicians take this expectation seriously and carry it as our mandate and our motivator. On many occasions I have witnessed my colleagues sacrificing their own comfort, health and personal wellbeing in order to do whatever was necessary to save the life of another human being, such as toiling in the OR all night -- without sleep, food or a bathroom break -- to repair a patient's badly lacerated liver, an injury that would have claimed that person's life had the doctor not been so dedicated and persistent.
Ideally, we doctors must maintain that passion for life, but we must also make room for death, since every patient we treat will ultimately die from one cause or another. Doctors need to cultivate a view of life that includes the reality of death.
"I don't have enough time, and the end of life is less important
than other issues I'm expected to discuss with patients."
Time is a premium commodity for nearly every doctor and there is precious little of it available. The average primary care office visit with an elderly patient lasts 15.7 minutes and covers six topics, according to a study by Health Services Research. Understandably, doctors must prioritize the information they discuss with patients and if the end of life isn't perceived as a necessary topic then it most likely won't be addressed.
Here the required mindset shift for doctors is to view the end of life as the final stage of life, a stage that has equal importance to all other stages. In fact, the end of life can be a time of great transformation and healing for patients and their families when there is time to prepare and do the important emotional and spiritual work required. Doctors can play a significant role in this process by helping patients identify when they have entered this final stage and when it is time to shift their focus away from treatment and toward inner work.
"Death represents failure."
When doctors carry within them the expectation that they are here to save their patients' lives, then every death is, indeed, a failure. In fact, many of my colleagues are quietly bearing unhealed grief over every life that has been lost under their watch. This burden of grief and guilt can cause doctors to avoid the subject of death and distance themselves from patients who are dying because the pain has become unbearable, as was shown in a study of oncologists in Canada.
But since death is inevitable and will be the outcome for each of us, we must find a way to accept it as a natural and necessary occurrence. In nature, physical life cannot exist without death, so we can only truly promote life if we include death as part of the process. Doctors must widen their view of the stages of life and expand their mission to incorporate dying as a necessary path for each patient, not a failure.
"I don't want to take away my patient's hope."
I often see doctors struggle with the concept of hope and its role in patients' recovery and healing. There is a belief that if hope can be kept alive, the patient can be kept alive, as well, and many doctors hold themselves responsible for generating that life-sustaining hope, even if it is unrealistic. So it is no wonder that those doctors fear introducing a conversation about the end of life, since that topic seems to be the antithesis of hope.
But in reality, patients hope for many things throughout the course of an illness, among them being relief from physical discomfort, time with loved ones and a sense of meaning in their lives. Even when a cure is not possible there is still much to hope for during the final days of life, so looking at the end of life realistically does not mean the end of hope -- just a shift in the focus of that hope. Doctors must recognize that genuine hope cannot be destroyed by the truth, but can actually be enhanced for patients when they face the future with realistic expectations and have time to plan for their final days.
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Ultimately doctors will become more open to discussions about the end of life because they will be required to do so -- by the demands of their patients and the medical system, and also by the very fact that they themselves will be confronted with death in their own lives. Medical care for patients at all stages of life will improve when the providers of that care can hold the sanctity of both life and death in their awareness.
Until then we must continue our end-of-life conversations, shining light on this subject that can no longer be relegated to the darkness. Join the discussion at End-of-Life University where you can listen to informative talks on all aspects of death and dying.
Dr. Karen Wyatt is a hospice and family physician and the author of the award-winning book "What Really Matters: 7 Lessons for Living from the Stories of the Dying." She is a frequent keynote speaker and radio show guest whose profound teachings have helped many find their way through the difficult times of life. Learn more about her work at www.karenwyattmd.com.