Release Date: June 27, 2016
BUFFALO, N.Y. – The career arc of Deborah Waldrop, a professor in the University at Buffalo School of Social Work, traces the evolving realization and subsequent development of better health care options for people at the end of life.
In the late 1970s, when she started in the field, hospice wasn’t even a possibility for the dying and their families. But today, standards exist for end-of-life care, and Waldrop is among those working on endorsing performance measures that will help palliative and end-of-life care continue to improve.
The National Quality Forum (NQF) recently named Waldrop a member of its Palliative and End-of-Life Care Standing Committee for the Palliative and End-of-Life Endorsement Maintenance Project.
Under the Affordable Care Act, hospices are charged with measuring quality of end-of-life care.
The 25-member multidisciplinary NQF committee will evaluate measures and make recommendations across various aspects of palliative and end-of-life care, including physical, emotional, social, psychological and spiritual needs.
“It’s a tremendous honor to be named to this committee, to be selected to a national leadership position,” says Waldrop. “But the committee’s work also means that we’re seeing progress in the field and recognize that we have standards to help people who are dying.”
The NQF has drafted a report describing the committee’s deliberations on the reviewed measures. Beginning June 20, the public and NQF members can comment on those decisions.
Hospice care began in London, England at St. Christopher’s in the late 1960s when Cicely Saunders, a nurse, social worker and physician, helped develop the first facility dedicated to end-of-life care. She later started hospice houses in the U.S.
Hospice care took a major step forward in 1982 when it became a Medicare benefit with greater attention to how that care was provided.
Waldrop has been a comprehensive witness to the developments. Years ago at the bedside, she often found herself saying that better methods were needed to care for people at the end of life. Now as a researcher, she explores the decision-making process that people who are dying and their loved ones engage in as death approaches.
Today, there are standards for what every hospice needs to provide, including a team that includes a physician, nurse, chaplain, social worker, health aids and volunteers.
“The standards and measures give me great assurance that the progress in improving hospice care will continue and that we will continue to improve our care,” she says.
As that care improves so too does an understanding of palliative care and how it relates to hospice.
“Palliative care is the umbrella. It’s holistic and puts the person and the family in the center of the patient care circle,” says Waldrop. “But it’s more than just the physical pain or the physical symptoms. It’s treating all the domains: physical, emotional, social, psychological and spiritual.”
“And it doesn’t just happen at the end of life. If you break a leg, you want to have care that looks at you as a person. Hospice is just one mechanism for delivering palliative care.”
Waldrop says concerns like pain management and the general area of physical care have come a long way, but gaps still exist in measuring psychosocial care, her area of expertise.
There is also room for improvement in the areas of spiritual care and bereavement.
Bereavement care is part of the Medicare hospice benefit package, with services offered to families and caregivers for 13 months after a patient’s death.
"I see bereavement and how we continue to care for the family after a death as the horizon we’ll be looking at in the future,” says Waldrop.
Watching a difficult death is a lasting memory for families, what Waldrop in her research calls “hard drive memories.” These are implanted memories that are carried into bereavement and don’t easily go away.
"So the ability to provide better end-of-life care or the ability to allow a person to have a less painful death provides some relief to bereaved family members,” she says. “It doesn’t equate to resolution, but it helps when they aren’t traumatic memories of the experience."