Growing the Seed

End-of-Life Decision-Making

It’s possible that School of Social Work Professor Deborah Waldrop studies the hardest questions of all: the questions that arise at the end of life.

Waldrop developed new protocols for studying end-of-life decisions with a small grant from the school’s Les Brun (BS ’74) Research Endowment. When the National Institutes of Health (NIH) called for research proposals on the topic “Methods to Enhance Palliative Care and End-of-Life Research,” she was “subject ready” with her new protocols in hand. A $10,000 seed investment of private funds for the preliminary study led to $400,000 in NIH funding to conduct a larger study.

Waldrop had been working closely with Hospice Buffalo to better understand what factors determined how terminally ill persons arranged their last days. But until she began her pilot study, she had been talking only with survivors, not with patients themselves. Although a majority of Americans say they want to die at home, most don’t: 60 percent die in hospitals, another 25 percent in long-term-care facilities.

She used the seed funds to develop and test a protocol that would be suitable for interviewing patients at the time when they were making decisions about their end-of-life care. This preliminary work included everything from how to frame the interviews so they weren’t intrusive and yet could yield useful insights, to the mechanics of recruiting subjects at such a sensitive moment, to compliance with the patient-protection regulations in the Health Insurance Portability and Accountability Act.

There has been relatively little rigorous research on end-of-life decision-making, especially compared with the potential benefits of better understanding. Waldrop’s research in the field is a perfect example of how the availability of a private fund to invest in “start-up” ideas can pay dividends for all of us.