Grants to Tackle a Difficult—But Unavoidable—Issue: End-of-Life Care

photo: Photographee.eu/shutterstock — photo: Photographee.eu/shutterstock

Remember those "death panels" that supposedly were part of Obamacare and a big government plot to let bureaucrats pull the plug on grandma? We haven't heard much about that canard lately, even though the Affordable Care Act has now been up and running for a while.

But that's not to say the dilemmas of end-of-life care aren't on the minds of healthcare experts in Washington, D.C., and beyond. A grantmaking outfit called the Patient-Centered Outcomes Research Institute (PCORI)—which was created as part of the ACA, with funding from both Congress and insurers—is actively wrestling with these issues.

There's only a limited number of funders who engage the topic of end-of-life care, despite how important it is. Last year, we reported on news that the Community Foundation for Southern Arizona (CFSA) and the David and Lura Lovell Foundation were investing nearly $3 million in this area. Another funder paying attention is the Gordon and Betty Moore Foundation, which is addressing end-of-life issues through its Serious Illness Care initiative. Moore, along with other funders, including the John A. Hartford Foundation, has been involved in efforts to advance the recommendations made in a 2015 report by the Institute of Medicine titled "Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life." The Cambia Health Foundation is another grantmaker interested in this area.

The Robert Wood Johnson Foundation used to be an important funder of work on end-of-life issues, but it wound down that grantmaking a while ago. Here and there, though, you'll see RWJF money supporting such work, like its support for "Improving Care at the End of Life: A Report of the Aspen Institute Health Strategy Group," which was published in 2016. The Engelberg Foundation and the Laurie M. Tisch Illumination Fund also backed that study.

The scarce attention to end-of-life care issues reflects a broader shortcoming of philanthropy, which is that aging is not a popular focus for foundations, as we've reported. That's a good reason to keep an eye on what PCORI is doing.

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We haven't written about PCORI before, since its funding mainly comes from government and is thus outside our wheelhouse of private philanthropy. But it's worth paying attention to this place, which has quietly invested $2 billion in more than 400 studies in patient-centered research in just the past five years.

Among other things, PCORI is exploring the kinds of questions likely to arise at some point in everyone's healthcare, like how to decide on a course of treatment when the risks and benefits aren't so obvious, or when any kind of real recovery is not in the cards.

PCORI started funding research in 2012 "to help patients and those who care for them make better-informed decisions about the healthcare choices they face every day, guided by those who will use that information." For example, it's funded studies to illuminate the risk-benefit equation in mechanical pump implants for people with heart disease, studies about chronic pain and opioids, antibiotics for children, and other issues.

A substantial amount of money is coming out of the organization, too, often in the form of hefty grants. In a November 2017 funding round, PCORI committed to $57 million in grants for 14 studies.

More recently, it invested millions into research on end-of-life care—a sensitive, difficult, but almost unavoidable topic. Too often, though, it's one that most people don't think about until it really is too late. The result, as we so often hear, is that deaths can unfold in ways that nobody really wants, including the patient and their family members, who may find themselves divided on care issues. The costs also can be enormous, although there's new research to suggest this issue is overblown. Regardless, with some 10,000 baby boomers turning 65 every day, the nation has a lot of reasons to help people better manage end-of-life decisions.

One solution that's gotten a lot attention is the creation of what's called an advance directive, the legal document that describes a patient's preferences for medical and other care in the last days, weeks, or months of life. But such directives still have a long way to go in terms of achieving their potential.

Recently, PCORI funded an $8.4 million grant to the University of California Los Angeles (UCLA) for research into the creation of advance directives. The UCLA researchers—in collaboration with investigators at the University of California, San Francisco, and University of California, Irvine—will evaluate three planning approaches that could be used in primary care clinics for people with advanced cancer, heart failure and lung disease. The aim is to determine which approach, or approaches, leads the patient to complete an advance directive, according to PCORI.

Ideally, the patient is able to make decisions about their own end-of-life care. That's not always the case. Most people have had, or will have the difficult experience of making decisions for an ailing loved one in their final days. Doctors and other caregivers can recommend, but not decide. Family members want to do what's best for the patient, spare them undue or unnecessary discomfort, and respect the patient's wishes—if known. But of course, the patient should have the final say when it comes to their body and their health. Advance care planning—specifically, advance care directives—benefit everyone in the picture.

Our medical system, whatever its flaws, is an excellent thing to have on your side when you're trying to survive illness or injury. Patients, too, have to play an active role in their care. Both the healthcare system and patients have to be equally informed when the time comes. It's very difficult and often unhelpful for laypeople to interpret results of individual research studies and apply them to their own health situations. Patient-centered research gets directly into the larger questions of what sort of care is really going to help. PCORI shouldn't be alone in this area, especially when it comes to knotty end-of-life issues.

And it's not entirely alone, as we mentioned. The new funding of the David and Lura Lovell Foundation in Arizona in this space is especially notable. Its grants last year for end-of-life planning and care projects amounted to $2.5 million, with recipients receiving between $20,000 and $1 million each. Grantees include the Arizona Hospital and Healthcare Association, Southwest Folklife Alliance, the University of Arizona Center on Aging, and Tu Nidito Children and Family Services.

In announcing those grants, John Amoroso, executive director of the Lovell Foundation, offered these wise words:

Our collective goal is to fundamentally change the narrative on how we plan for, care for and experience death and dying in Southern Arizona and beyond. Ultimately, we all—individuals, families, caregivers, health systems and communities—bear the responsibility for changing the status quo by helping each other to engage in compassionate, honest conversations about our mortality, the type of healthcare we wish to receive and how it is given across the spectrum of life choices.