BUFFALO, N.Y. -- 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
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: http://www.youtube.com/watch?v=NDnfMOlTf7g.
"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
"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
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."
The University at Buffalo is a premier research-intensive public
university, a flagship institution in the State University of New
York system and its largest and most comprehensive campus. UB's
more than 28,000 students pursue their academic interests through
more than 300 undergraduate, graduate and professional degree
programs. Founded in 1846, the University at Buffalo is a member of
the Association of American Universities.