University at Buffalo School of Social Work Professor Deborah P. Waldrop has seen people die. Too often, their lives have ended in pain and despair, spending their final days in an alienating institutional environment, just another patient in an impersonal progression that leads to what she calls “reciprocal suffering” for families who also watch their loved ones die.
There is another way. In the decades and multiple settings Waldrop has worked with terminal patients, she has seen a growing emphasis on factors that contribute to a “good death.” People can make that life transition in a home that has sustained them for many years, surrounded by the people who have given their lives meaning. “Comfort” can be the defining goal of a death without pain and suffering.
Too often, Waldrop says, critically and chronically ill patients lack information about options for care that can lead to that “good death” scenario. Bridging that gap -- identifying what factors or “trigger points” at which important conversations should happen -- is what her latest end-of-life research is all about.
She discusses her research in a video interview:
“People are without information, and providers and families often don’t have the skills to ask difficult question such as: ‘How much longer do you want to keep going back to the hospital?’” says Waldrop.
“There is an avoidance of death in our society that often sidesteps these questions. When asked, the majority of people, say they want to die at home surrounded by their family. Yet, actually 60 percent of chronically ill people die in hospitals and 20 percent die in nursing homes, so these wishes are often unfulfilled. There may be many reasons for this.
“We’re not having these conversations. We’re not addressing what people want. When you don’t really talk about it, things like unwanted aggressive treatment or another emergency room visit happen by default.”
Waldrop is a soft-spoken academic and researcher whose words accelerate and whose tone fills with intensity when she addresses the urgency of her work. If the idea of a good or more compassionate death is starting to enter the American mainstream, it’s an uneven process, with stops and starts. Various professional organizations throughout the country are focused on improving options for care in advanced chronic illness and encouraging conversations about individual wishes at the end of life.
But there’s an abyss that exists between what people say they want and what they end up doing, Waldrop says, a gap that brings physical, emotional, psychological and existential pain. And because more and more people are living longer, it’s more common than ever. The difference between choosing palliative care and continuing along a traditional medical path with a cure as the goal is often profound.
The bulk of Waldrop’s research consists of face-to-face interviews, almost 200, of patients and the people who have taken on the responsibility of caring for these terminal patients.
So far, the factors that affect the decision to ask for hospice care break down into two categories. There are clear physical factors. When does a person lose the ability to manage the activities of daily living?
“The loss of functional abilities is key,” Waldrop says. “That requires more caregiving from families. When someone has pain or symptoms that are out of control, that’s one of the trigger points to families that lead them to say they can’t do this anymore. What is their life going to look like from now on? How am I going to manage?”
There is also a spiritual, existential or psychosocial side. At what point do people realize they are dying? There is a point at which they recognize that death is approaching and they just want to be comfortable and surrounded by their family.
“What is it that brings people to the point at which they can consider different options?” Waldrop asks. _Once she identifies the trigger points that have determined when patients move from curative to palliative care, Waldrop will share these factors with patients facing terminal illnesses, their loved ones and also with professionals whose job it is to talk with families about the end of life.
Waldrop will continue to interview through July, when her grant from the National Institute of Nursing Research ends. Then she will publish her final conclusions._“As soon as possible,” she says when asked when the research will be complete. “This is my life’s work. I spent 25 years as a social worker sitting with people who were making difficult decisions among bad options. Additional and better options such as hospice and palliative care in a variety of settings now exist, but access is uneven. And, it has to start with frank, honest conversations about what people want and what families can do.
“People don’t have to pursue aggressive treatment as though there were no choices. The best approach for people is not always ‘Give me all you got.’ And these options have been slow to make it to the mainstream of medical specialties.
“This may be what people want most of all.”