Five Minutes  with Ira Byock
by Yvonne Parsons
Contemporary Long Term Care, May 1997

Parsons: How do Americans tend to see death and the process of dying?

Byock: We define a good death by what we want to avoid. You ask an American what a good death is and he'll tell you, "I don't want to be in pain, I don't want to die breathless, I don't want to feel isolated or abandoned. I don't want to be an emotional burden to my family and I certainly don't want to be a financial burden to my family." It's as if our notion of success at the end of life is a photographic negative - something devoid of all tone and texture and color, an empty space, a non-space.

When people are assured that they will not be abandoned, will not be in intolerable pain or physical distress, and when they are treated in a caring and dignified fashion, they have told me over the years that this time of living has surprising amounts of value, importance, and meaning for them. In my book, I have tried to show that through actual stories of folks.

Parsons: Do caregivers tend to think of death as a failure on their part?

Byock: Exactly. Think of how we organize medicine. People come to doctors and we create problem lists, and for every problem on our list we SOAP our notes [enter subjective and objective data, arrive at an assessment, and create a plan]. That model, while it is a powerful and effective model for addressing problems, limits our view. Dying is more than a set of medical problems to be solved. It is not a subtle observation that dying is a profound personal experience.

Parsons: So mind-sets need to change. What other obstacles do nursing facilities need to address?

Byock: I think they are understaffed. I think they don't pay people enough. The nursing aides in nursing homes are some of the heroes of our country. They are the people caring for our grandparents and parents, our siblings, and for some of us, our children, all in their most frail and physically dependent state. They should be very well compensated and deeply respected. And they're not. They are underpaid and enjoy no stature within either medicine or human resources, and, quite honestly, I think it is a national shame. If we were to better compensate and staff at a higher level - the aide position as well as the staff nursing positions in nursing homes - we could begin to do the sort of training and team building that hospice is based on; we could bring the same standards of end-of-life care to nursing homes as is enjoyed by patients and families served by the best hospices in this country. That is really my dream.

Parsons:  Aren't we starting to see more partnerships with hospices?

Byock: It's shaky. The profit motive is very destructive. The nursing homes often see [hospice providers] as competition. [And there are] unscrupulous business practices on the part of some hospices.

But yes, there are more nursing homes availing themselves and their clientele of good hospice care, and it is a good trend. I think nursing homes could be doing this themselves, but they would have to staff and train better. Right now, in so many communities, we'd love to train in the nursing homes, but it is really very difficult because their staff turnover ratio is so extraordinarily high that it doesn't make it worth doing.

Parsons: What steps can nursing facility administrators and directors of nursing take to improve care for residents who are dying?

Byock: They can invite in hospices and do in-services. They can develop protocols to ensure that patients' symptoms are regularly assessed in a reliable manner and that when patients are in distress there are protocols in place that require a prompt and effective response. And clearly we need the social support staff in the nursing homes who are familiar with not only advance directives, the forms, but also the process [of advance care planning] - staff members who can help people really come to decisions about what is best for them in various circumstances. I think [such planning] is being done better, but we have a long way to go.

Nursing homes and long term care facilities have the opportunity to recognize that by doing what we do best, caring for our patients, bringing real medical competence to the job of alleviating physical distress, and providing good social support - not only to residents but to their families - we can preserve the opportunity for people to utilize the last part of their life, to say the things that matter most, to address the issues that are on their minds. And in so doing we can preserve their opportunity to grow through the end of life.