Annals of Long-Term Care: Clinical Care and Aging. 2012;20(6):48.
Dying will never be easy, but neither dying nor caregiving for loved ones in the waning phases of life have to be as hard as they are today, according to Ira Byock, MD, author of the new book The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life. Byock, director of Palliative Medicine at Dartmouth-Hitchcock Medical Center, Lebananon, NH, has worked for more than 30 years in hospice and palliative care, and during the first 15 years also practiced emergency medicine. Writing for the general public as well as clinicians in practice and in training, Byock shares his personal experiences and the insights he gained while caring for patients facing the end of life. Annals of Long-Term Care® (ALTC) had the opportunity to interview Byock about the concept of “dying well” and the book’s implications to long-term care providers.
ALTC: Can you speak to the goals of your book and, specifically, to the changes in practice and in attitude that you would like to see in end-of-life care?
Byock: We spend far too much on the last 2 years of life and receive far too little in return. America’s healthcare system is actually a disease-treatment system. People’s health—including their physical, emotional, social and spiritual well-being—is often ignored in the quest to preserve life at all costs. Typically, when someone is diagnosed with a life-limiting disease, such as advanced cancer, Alzheimer’s disease, or ALS (Lou Gehrig’s disease), the worst thing people can imagine is that the person will die.
In the process of battling disease, people often experience needless suffering, sometimes dying sooner than they should and sometimes lingering in a state of prolonged dying that few people would want. The lack of forethought and planning increases the risk of dying badly. It is natural to want to avoid thinking and talking about the end of life, but since mortality is a fact of life, planning is essential to make the best of an inherently difficult situation. Through the stories of people I have cared for, I have tried to show how we can prevent suffering and make the best of the most difficult situations that any person or family can encounter.
How do you define “dying well”?
As I use the phrase “dying well,” it is essential that the word “well” be read as both an adverb and an adjective. People tend to perceive the word “well” as only an adverb, and they can mistake it as referring to a correct or right way for someone to die. It is more important to also hear the word “well” as an adjective that describes the person who is approaching the end of life. So many people I have helped to care for through the end of life have taught me that it is possible to feel well within oneself and right with the world, even as one dies. I believe that from both a medical and anthropological perspective, the capacity to be well as one dies may be the crowning achievement of life.
What are the book’s key take-home points for professionals working in long-term care?
In general, anyone who works with people who reside in long-term care settings has been taught to focus on patients’ medical problems. Certainly, people who are elderly or frail because of medical conditions have more than enough problems to capture our attention. However, illness and dying are only partly medical; they are mostly personal—profoundly so—for the individual who is ill and for his or her family.
The bright potential for long-term care is to expand beyond solely responding to disease or age-related problems by enhancing the personal experience of residents and their families. This is not far-fetched. Those who work in nursing homes and assisted-living facilities know that it is possible to deliver excellent medical and nursing care with tenderness and love. Beyond prescribing and administering medicines, we can treat residents as whole persons. We can keep them company, listen to their stories, and find things that bring them some joy, whether it is a song, a visit from a therapy dog or a young child, an hour in the sun, or a few spoons of butterscotch pudding. And when people are approaching the end of life, we can honor and celebrate each one in his or her dying. In so doing, long-term care really can hold American healthcare to the highest standards of human caring.
The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life was published in March 2012 by Avery.