Rethinking end-of-life care

So much of the U.S. healthcare system is about initiatives to keep older adults healthier longer and to engage them in the management of their own health. But the person-centered care movement, so dominant in today’s senior living models, needs to reach the realm of end-of-life care, too, urged top senior care leaders and policy experts meeting March 20 for a day-long conference in Washington, D.C.

The Institute of Medicine’s (IOM’s) “National Action Conference: Policies and Payment Systems to Improve End-of-Life Care” gathered speakers and attendees in discussions on the complex mix of policies and values surrounding the topic, as well as the tradeoffs between medical treatment and quality of life.

The springboard for the conference was the IOM report “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,” released in September 2014. The report called out the inadequacies of the nation’s current approaches to care of the dying and was viewed by many as a call to action for the senior care industry.

The Centers for Medicare & Medicaid Services (CMS) is going through growing pains to explore new ways to define end-of-life care—including a rule-making proposal to assign a code for end-of-life care, the first step in exploring payment for specific types of care for the dying. The agency also is exploring the care choices model for including palliative care within the process of curative care, a project that has garnered much interest and applications, Patrick Conway, MD, deputy administrator for innovation and quality and chief medical officer for CMS, told attendees.

“We need to involve the whole spectrum of people who help manage and engage families and caregivers at the end of life,” Conway said. “Then we’ll have a system that reflects what all of us would want at the end.”

The right to choose not to fight

Too many people don’t realize the roles that hospice and palliative care play in quality of life, or that patients have a right to refuse curative treatment, said Peggy Maguire, JD, senior vice president for corporate accountability and chief of staff, Cambia Health Solutions. “Sometimes ‘fight, fight, fight’ can lead to bad quality of life.” When her own father received a diagnosis of terminal cancer 25 years ago, Maguire said, “In our shock, we did everything we could to fight the disease. We didn’t know about palliative care, and we didn’t ask for it. My dad’s quality of life suffered greatly. Chemotherapy ravaged his body, leaving him weak, exhausted and hospitalized. In retrospect, we know that the treatment was probably futile.”

Everyone probably has experienced a family member or friend facing a life-threatening illness. “Ask yourself if the recommendations in the [“Dying in America”] report would have helped them,” she said. “Take off your professional hat and think about this not as a policy issue, not as a reimbursement issue, but as a very personal issue.”

If you build it, who will pay?

How the healthcare system is going to pay for hospice and palliative care is another majorquestion. As more residents begin to choose hospice care, many are questioning Medicare’s current payment models.

About 25 to 30 percent of Medicare’s costs go toward end-of-life care, primarily in the last six months of life, noted Harold Paz, MD, executive vice president and chief medical officer of Aetna. “Advanced illness drives a considerable amount of funds,” he said. “Can we demonstrate value in providing the right care at the right time in the right place?” Doing so means grappling with the question of when—and where—hospice and palliative care will be supported by insurers, as well as making sure that residents and families are informed of choices, he added.

Thirty years ago, Medicare’s hospice benefit was used mainly used by patients terminally ill with cancer and living at home. Now, the benefit serves primarily non-cancer patients living in a variety of settings and receiving care from a range of providers.

Much of the payment reform has been focused on scrutinizing the appropriate use of services and the length of stay in hospice care. “Payment reform alone won’t address fundamental challenges about how hospice connects with the rest of the healthcare delivery system,” said David Stevenson, PhD, associate professor of health policy, Vanderbilt University. “It also won’t address the limitations of many people accessing hospice very late in the process of dying.”

One of the issues is that hospice care is considered a carve-out under the Medicare Advantage program. A few insurers, including Aetna, are experimenting with new payment models that bring hospice and palliative care under an umbrella along with curative care. “Opportunities are being lost by carving out hospice and restricting people who enroll in hospice from participating in care coordination demsonstrations.”

Another issue is the lack of benchmarks to measure what constitutes quality end-of-life care. Although opportunities exist to integrate hospice and palliative care services into a broader benefit package, Stevenson said, “We need to have quality measures in place if we want to move forward. As Medicare moves toward a greater emphasis on integration and value, there are opportunities to reshape individuals’ care and align it more closely with what they want at the end of life,” he added. “Hospice is a central part of this equation, but it needs to be viewed as less of an escape from traditional medicine and more as a central component to high-quality care.”

The culture of dying

Plenty of the discussion centered on changing the culture of dying, shifting the direction of medicine and care from the physician to the patient.

“We don’t really know when end-of-life begins, but quality-of-life needs appear as soon as illness knocks at your door,” said Rebecca Kirch, JD, director of quality of life and survivorship, American Cancer Society. The focus should be on the opportunities for patients and therapies, instead of what physicians and curative care teams have designed as the pathway from A to B, she noted. The culture change is reflected in the American Cancer Society’s latest advertising campaign, which centers on giving those with cancer the words to express what they do and do not want during their care.

The IOM Committee on Approaching Death is studying the relationships among medical care delivery, emotional support, advance care planning, financing and reimbursement, health professional workforce and the education of caregivers and families. “Today, death has all too frequently become a medical event, often involving the use of advanced technology and extraordinary procedures due to very different cultural, societal and individual expectations. Death typically occurs in hospital settings, with family and friends sometimes separated from the dying patient because of distance from home and community,” notes the study’s description.

Said Cambria’s Maguire: “We are in the business of changing the way people experience healthcare. We try to make sure the care they receive is consistent with their individual values, goals and preferences. To treat the whole person and not just the patient and not just a body part, we need to think about what they need from both a medical and psychosocial lens. There have been tremendous silos between health services and social services. But it doesn’t have to be that way.”

Related articles:

IOM looks deep into end-of-life care
3 strategies to improve end-of-life care
Changes would improve end-of-life care, report says

Pamela Tabar

Pamela Tabar was editor-in-chief of I Advance Senior Care from 2013-2018. She has worked as a writer and editor for healthcare business media since 1998, including as News Editor of Healthcare Informatics. She has a master’s degree in journalism from Kent State University and a master’s degree in English from the University of York, England.