by MaryAlice Bitts-Jackson
Most of us avoid talking about end-of-life options, so when the situation arises, we’re not sure how to proceed. Our doctors are not well-equipped to help us navigate the constellation of factors that weigh in, like cultural and religious beliefs, family dynamics and caregiver preferences, and they are not trained to consider or discuss a complete range of options. So when we, or those we love, get a serious diagnosis, how do we determine the best path?
“There are so many decisions to make, and they have to be made fairly quickly,” says Professor of Political Science Jim Hoefler, a leading authority in end-of-life and right-to-die policy who has seen this scenario play out in his family and in the public sphere. “But it’s hard to make an informed choice if you don’t know what all of your choices are.”
To address the problem, Hoefler created a website that connects people facing decisions around serious illness with useful advice from experts in end-of-life care. Produced in partnership with public-radio affiliate WITF, with funding from Dickinson, through a Mellon Foundation grant, Hoefler's Finding Peace website was unveiled in October, as part of WITF’s flagship public-health series, Transforming Health.
The project springs from Hoefler’s decadeslong study of state and federal laws concerning end of life in America and Western Europe. The author of three books, including two on death and the right to die, he served as an expert source in the high-profile cases involving Brittany Maynard and Terri Schiavo, and he’s held positions on the boards of a local hospital and the Partnership for Better Health. He teaches courses in managing death, policy and leadership, public speaking and American government.
Over the years, Hoefler has noted that, despite laws passed with intent to improve quality of life for the terminally ill, many patients continue to die in moderate to severe pain, in part because patients and their families aren’t aware of all of the available options, since doctors are trained to focus on lifesaving or life-prolonging measures in all instances, and may not bring up, or know how to effectively bring up, alternatives such as palliative care. Well-known books on the topic fail to drill down to important details, like the benefits and burdens of tube feeding or how to seek a second opinion, and they also are not universally read or easily absorbed in the heat of family crisis.
“What people need is good information that they can easily access as questions arise—the kind of advice that experts would give to members of their own families,” says Hoefler. “It’s not about telling patients and their caregivers what to do. It’s about putting all of the options on the table and helping them think them through, so they can make their own decisions.”
After working on Closure, a series of discussions between end-of-life professionals, he conceived of the idea of an online video portal. WITF got on board, and provided a film crew as Hoefler interviewed medical professionals, counselors and faith leaders at top hospitals and universities, including New York's Mt. Sinai and UCLA Health in Los Angeles.
Each video clip on the site is easily digestible—about four to five minutes long—and grouped by category: symptom management, family roles, caregiving and patient preferences, reassessments, denial, palliative care/hospice, spiritual care, bereavement and priority-setting. The experts interviewed speak in plain language about the issues they face every day, from practical matters, such as how to use mechanical ventilation or when to consider palliative care, to broader concerns like how to prioritize decisions and how to work through change, family conflict and grief. The site also lists resources for patients and families in Central Pennsylvania, including health providers, funeral services and support for grieving adults and children. Perhaps most powerfully, the website includes a radio interview with a Cumberland County woman who discusses her family's decision-making process after her husband, a medical professional, received a terminal-illness diagnosis.
Hoefler also has built the site Caring During Serious Illness, now in use in hospitals and nursing homes and as part of social-work curricula across the country, as well as in his own health studies and policy classes. It presents 114 excerpts from his interviews with nationally noted end-of-life professionals, including Joanne Lynn ’70, a former Dickinson biology major, geriatrician, health-services researcher/advisor and policy analyst who directs the Altarum Institute Center for Elder Care and Advanced Illness and is recognized as one of the top experts in the field.
By making this information publicly available, Hoefler hopes to help spark the start of a regional cultural shift—one in which more patients and families may begin to talk about death before crises arise.
“Nobody likes to talk about death—we don’t even like to think about mortality. So this kind of cultural shift takes a long time,” he admits. “But when people have these experiences and then share what they learn, the culture of denial can change. And that will be helpful to everyone, because sooner or later, we all encounter these experiences.”
Published November 21, 2016