This interview-article, written by Carol Levine, was published in the March/April 2012 issue of Aging Today. Entire contents ©2012 American Society on Aging. Re-posted here with permission.
Dr. Ira Byock is a renowned palliative care physician and advocate for patients with advanced illness and their families. He is the director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., and the author of Dying Well: Peace and Possibilities at the End of Life (Riverhead, 1998) and The Four Things that Matter Most: A Book about Living (Free Press, 2004). His latest book, The Best Care Possible: A Physician’s Quest to Transform Care through the End of Life (Avery, 2012), builds a powerful case for compassionate and skillful care through the end of life.
Carol Levine: What is the ‘best care possible’ in advanced illness? Some people say they want ‘everything’ and others ‘nothing.’ Is there consensus about what is best?
Ira Byock: We all want the best care possible. However, every individual is different. There is medical consensus around the appropriate standards to follow in determining the best care for a particular patient. This involves careful consideration of the patient’s condition, the available treatments and their side effects, and an in-depth exploration of the patient’s preferences. Care that might be appropriate at an early stage of the disease may cause needless suffering at a later stage. There are limits to what is possible.
CL: Why is it so hard to obtain care that meets these standards?
IB: We now have the quality framework for excellence. What we lack is consistency in applying best practices. We also lack ‘consumer demand’—that is, patients and families demanding best practices. The barriers to improvement are huge: our death-denying culture, our nation’s acutecare system that focuses on diseases rather than whole persons and our financing system that rewards more treatment rather than the best care.
Adding to these longstanding problems, we now have political polarization that stymies rational debate. The apparent chasm between ‘pro-lifers’ on one hand and ‘right-to-diers’ on the other creates distractions that only fuel confusion and distrust of physicians among people facing serious illness.
CL: Hospice and palliative care are sometimes portrayed as promoting a ‘culture of death.’ Yet stories in your book illustrate how hospice and palliative care can work together to manage symptoms and provide sophisticated care that extends life.
IB: Absolutely. Palliative care is pro-life in the truest sense. Unfortunately, patients and their families have so many misunderstandings about hospice and palliative care that they don’t even want to consider these options until it is too late to receive the full benefits. Many people think that by accepting hospice—and by extension, palliative care—you have to give up on living and embrace dying. By focusing on people’s comfort and quality of life, it is not surprising that seriously ill people occasionally live longer.
CL: You point out that some of the problem stems from Medicare regulations.
IB: What is sometimes mistaken for ‘hospice philosophy’ is actually a set of rules imposed by Medicare when the hospice benefit was set up in 1981. These rules require people to sign a form that says they will forgo disease treatments in order to receive hospice care. No wonder many people think of hospice as ‘giving up.’ Palliative care does not have that limitation. As of yet, however, team-based palliative care is not a Medicare benefit like hospice.
CL: Given all these barriers, you are still hopeful for the future.
IB: I believe that my generation, baby boomers, has the collective power to demand the best care for our aging parents and relatives and for ourselves. We have done it before. Some of Aging Today’s readers will remember what giving birth used to be like in the 1950s. Remember how fathers were consigned to waiting rooms? How women were given anesthesia they didn’t want? And how their newborns were whisked away to sterile nurseries? This situation changed dramatically,
and for the best, because people demanded it, not because doctors thought it was a good idea.
CL: This sounds like a social movement.
IB: Yes, this is not just a medical problem. In addition to reforming our health system, we need broadbased advocacy aimed at transforming care through the end of life. Physicians know that we can do better, that our patients and their families deserve better. They have to be less timid and fearful of controversy. Each of us—in our communities, workplaces and religious institutions—has to advocate for change. It can happen, but each of us needs to work toward making the vision of competent, compassionate care a reality.
Carol Levine is director of the Families and Health Care Project at the United Hospital Fund in New York and director of the Fund’s Next Step in Care website (www.nextstepincare.org). For more information about Dr. Byock, visit www.irabyock.org.