Speakers share urgent ideas for changing our broken approach to dying in America

Over the last century, death in the United States has evolved from a family event to a medical event. 

As a result, many people die in circumstances that don’t reflect their preferences or values, said Leonard Schaeffer, founder of the Leonard D. Schaeffer Center for Health Policy and Economics at USC and former CEO of WellPoint, now Anthem.

The challenges of end-of-life care decisions and policies were the focus of the Center for Health Journalism’s Health Matters webinar last week. Schaeffer, who served on the committee that crafted the Institute of Medicine’s “Dying in America” report, was joined by Ann Neumann, the author of the critically acclaimed book “The Good Death: An Exploration of Dying in America,” and a visiting scholar at NYU’s Center for Religion and Media.

The two speakers discussed how to transform death from a medical event to one that includes the social, emotional and spiritual aspects of patient’s values. That transformation requires not only a change from our fee-for-service medical system, which encourages intensive treatment at the end of life, but also better communication with patients before they reach that point – a struggle Schaeffer experienced firsthand with his own mother’s death.

“From that experience, I came to believe that patients should not have to confront a health care system that doesn’t allow them to influence decisions about how they maintain their quality of life and how they die,” Schaeffer said.

Telling people’s stories

Author and journalist Neumann also found herself personally drawn to end-of-life experiences after the painful experience of watching her father die from non-Hodgkin lymphoma. She’d imagined him dying differently, tucked into bed, with some soup and kind words from family.

“I promise you that’s not how it went down,” she said. “I was very much broadsided by the experience, and I was angry at my dad for dying the way he did; I was angry at our society, the hospice nurses, my family and culture at large for not better preparing me for the most common event in people’s lives — the loss of loved ones.”

Neumann wanted to know how common her father’s painful experience was, so she became a hospice volunteer. She stressed the importance of telling the personal stories that can not only spur policy changes, but also bring nuance and understanding to complex topics.

Neumann described some of the people she encountered on her decade-long reporting journey, from a prisoner on a hunger strike to a disability rights activist to a home health aide doing hospice work.

In her encounters with Maria, a home health aide, she realized the “plight of home health aides,” people who are often doing “the dirtiest work imaginable” yet are paid low wages without sick leave, job stability or security. Yet, even with low wages, the in-home care can be prohibitively expensive for families.

“Not only did Maria teach me we need to strengthen home health, but also the resources we allocate to this kind of care,” she said.

IOM report lays out roadmap

In the webinar, Schaeffer elaborated on the recommendations in the IOM’s “Dying in America” report, which urged changes in five key areas to transform end-of-life care. Those include:

• Delivery of person-centered, family-oriented care: Health care should focus on integrated, patient-centered, family-oriented care near the end of a patient’s life. People are often moved between medical facilities and work with different caregivers during this time, and that fragmented care can be burdensome, he said. The report recommended care that’s integrated and includes services that address the emotional, social and spiritual needs of patients and families. 

• Doctor-patient communication and advance care planning: Many people near the end of life aren’t physically or mentally capable of making decisions about their care, and, too often, their providers aren’t prepared to help with these choices, Schaeffer said. Conversations with clinicians should be ongoing and occur well before the end of life, with patients’ preferences documented in their electronic health records. Clinician performance on these measures should be tied to payments to ensure the conversations happen.

• Professional education and development: Even though progress has been made with establishing palliative and hospice care as specialties, the demand for providers far exceeds supply, Schaeffer said. Educational institutes, professional societies and accrediting organizations should establish requirements for palliative care skills and knowledge among providers. The report recommends increasing the number of palliative care specialists and expanding the knowledge base of all clinicians.

• Policies and payment systems: The report tackled the financial incentives — such as fee-for-service reimbursement — that can encourage unnecessary care at the end of life. This care doesn’t always match the needs and wishes of patients and can be extremely costly. The committee recommended moving away from fee for service to encourage better integration of medical and social services, a step that could curtail trips to the emergency room. Providers should also be paid to document and deliver this integrated care that patients want. (After publication of the report, the Centers for Medicare and Medicaid Services announced it would pay physicians for end-of-life counseling.)

• Public education and engagement: The report encouraged more meaningful conversations about end-of-life options well in advance. Health providers should join with civic leaders, consumer groups, media, employers, and faith-based organizations to help inform the public and raise awareness about their options.

The committee’s vision for a better system would mean three big changes, Schaeffer said. First, patients would be more respected and family members better supported. Patients would also experience fewer medical crises because comprehensive care would help avoid the kinds of problems that lead to more ER visits and hospitalizations. And, finally, society at large would benefit because restructuring the health system in this way would stabilize costs.

The role of journalists

Both speakers stressed the ways in which journalists can humanize the end-of-life story, and spur conversations on a difficult topic.  

“Everyone has a story,” Schaeffer said.

“Most Americans are aware of a difficult experience in the final days of a loved one’s life,” he said. “Journalists who can educate the public about policy and personal options for a good death can accelerate the cultural and systemic changes we need,” he said.

Neumann urged fellow journalists to “Ask as many questions as you can. Conduct endless interviews.”

Stories recounting one of life’s most dramatic moments are inherently relatable, she said. She suggested seeking editors that may have some personal sympathy with the subject matter, as well as finding publications that reach aging audiences. Increasingly, editors want stories on these topics because they know how much they matter.

“Consider the elder beat,” she said. “It’s vast, it’s very rich, and, in many ways, it will touch your own life.”

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Watch the full presentation here: