A Better Way to Die
Why public health was slow to embrace end-of-life issues—and how it’s catching up
When Sydney Dy, MD, MSc, arrived a decade ago at the Bloomberg School, she wondered how her work as a hospice physician and end-of-life researcher would fit in. “I could see how some people in public health might look at what I was doing and end up feeling it wasn’t about getting people healthier,” she says.
Then she looked at the question through the lens of her clinical work with inner-city patients. “I’d find myself caring for a family member, and in the same house you’d have a teenager with a baby and a partner in prison,” says Dy, now an associate professor in Health Policy and Management (HPM). “Everyone is wondering who’s going to help take care of the child after this patient dies. The end of this one life was a really important piece of the whole situation for the family—everything was interrelated.”
Few people in the U.S. die quickly and unexpectedly. For more than four in five of us, the end comes after one or more diagnoses and plays out over weeks, months or years. As Dy observed in those inner-city households, this is not a journey we make alone—loved ones are along for the ride as well, managing their own issues and stresses.
In medicine, end-of-life issues are the focus of more and more attention. Not long ago the vast majority of Medicare patients who died did so in the hospital. Today, about 45 percent choose hospice—and that number is rising.
Palliative care is growing nearly as fast. This field moves hospice concepts upstream, with the goal of helping patients be healthier throughout a serious illness. Two-thirds of U.S. hospitals now have palliative care initiatives, according to the nonprofit Center to Advance Palliative Care.
However, the subject still receives scant attention from the public health establishment. “Our physician and nurse friends have done marvelous work over the last 30 years—when you’re starting at one and you move the dial up to 40 percent, that’s huge,” says Dale Lupu, PhD ’96, MPH ’88, an HPM associate who is also on the faculty at George Washington University. “But we’re behind the curve in public health. There are so many questions out there—about what payment models are best and what delivery systems work and how to train the workforce we need. But at this point the scholarship just isn’t there.”
When Dan Morhaim, MD, an adjunct faculty member in HPM, tried a few years back to look up data on how many Americans have completed advance medical directives to guide the care they’d receive in the event they become incapacitated, he was surprised to find that it didn’t exist. “That kind of basic counting is what public health is good at,” says Morhaim, a physician and Maryland state legislator. “But no one had done the study, except among small, limited populations.” A team of Bloomberg School colleagues soon found that two-thirds of Marylanders had no such directives.
In 2011, Johns Hopkins University Press published The Better End: Surviving (and Dying) on Your Own Terms in Today’s Modern Medical World. The book aims to empower the public to be a driving force in the revolution in end-of-life care.
“Ours is the first generation in history that has a say in how we die, and everybody needs to prepare,” says Morhaim. “When the end comes, do we want to be getting pummeled in the intensive care unit long past any hope it’ll do much good? Or is it more appropriate to be at home?”
Dy’s team is currently studying the best ways to deliver palliative care to advanced lung cancer patients starting at diagnosis. (Currently, most patients are not seen by palliative care until very late in their illness.) They are looking to bring to Hopkins Hospital the results of a blockbuster 2010 study at Massachusetts General. There, researchers found that patients receiving early palliative care had less depression, less pain, fewer complications, and lived three months longer than a control group that received more traditional hospice care in their final days.
“A lot of us in the field see research as a real need, especially focusing on what strategies work and which ones don’t,” she says. “Part of what makes this field so exciting is that we have such great strides to make. There is so much out there just waiting to be accomplished.”
That work has growing momentum at the School. Joseph Gallo, MD, MPH ’91, a Mental Health professor, has been studying the end-of-life care preferences of aging physicians and how and why they change over time. In HPM, researcher Christine Weston, PhD, has launched a project to improve training strategies when teaching physicians how to conduct the difficult discussions that need to happen with dying patients and their families.
In Lupu’s view, professional education in public health is as pressing a need as research. The course she and Dy co-teach to HPM students is one of just a handful in the U.S. focused on end-of-life policy.
“We’re graduating all these public health students from all these schools, and most leave without any meaningful understanding of something that accounts for a lot of avoidable suffering and makes up a big piece of the costs in our health care system,” says Lupu who runs a consulting firm for hospice and palliative care programs.
An estimated 30 percent of Medicare costs go toward care in the final months of life. With much of that being spent on hospitalizations, multiple providers and intensive care units, the shift in end-of-life care toward offering hospice and palliative care to more patients has important implications not just for delivering better care but also for cost reduction in the system.
“There really shouldn’t be any question anymore about whether this belongs,” Morhaim says. “What we’ve been talking about here is how to deliver care defined according to personal values that helps people be healthier and live longer—and it’s care that costs less money. Those are all pure public health outcomes.”