Policymakers Take Important Step Toward Better End-of-life Care

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New measures would hold individual clinicians and health systems accountable for the type of care delivered near the end of life.

Sooner or later, most of us will have to make plans for end-of-life care—for a parent, a spouse, or ourselves. Modern medicine gives us many options to consider, from aggressive treatments to pain relief and comfort care. But all too often, people find themselves with an advanced illness without having articulated their preferences. With Medicare planning for an estimated 83 million seniors enrolled by 2050, now’s the time for policymakers to make reforms to the health system that help people with serious illness—and their families—take greater control over their health care near the end of life.

Last week, Reps. Phil Roe (R-Tenn.), a physician, and Earl Blumenauer (D-Ore.) introduced legislation with the potential to greatly improve patient care. The Personalize Your Care Act would address gaps in the way we measure the quality of care near the end of life and would bolster ongoing state and private sector efforts to help people plan for their end-of-life care. With broad support from experts in the field and organizations representing consumers, clinicians, and faith communities, the legislation would help ensure that an individual’s wishes are documented and carried out.

This bill is one of several indications that policymakers are ready to grapple with issues of how to improve end-of-life treatment, which includes controlling pain and discomfort as well as meeting psychological, emotional, and spiritual needs.  A necessary first step came last year, when Medicare opted to reimburse health care providers when they discuss end-of-life care with patients and families. With their knowledge of their patients’ histories, family doctors can help patients create advance care plans that document their wishes before illness or accident prevents them from speaking for themselves. Physicians can also help update these plans as people age or are diagnosed with a chronic, debilitating, or terminal illness.

Having an advance care plan, however, is just the first step toward improving our health care system for people with advanced illness. The Personalize Your Care Act would provide states with the resources necessary to educate consumers and clinicians about the need for advance care planning. The bill’s federal funds could also be used to build the infrastructure to make sure providers can access electronic copies of advance care plans in any hospital or emergency room.

The bill from Reps. Roe and Blumenauer bears many similarities to the bipartisan Care Planning Act, sponsored last year by Sens. Johnny Isakson (R-Ga.) and Mark Warner (D-Va.). Both would help people make informed decisions about their treatment preferences near the end of life. And both would direct Medicare to develop, test, and adopt quality measures appropriate for end-of-life care. We have many measures to assess the treatment for common illnesses that require acute care; for example, quality measures are in place to judge whether medications to help patients recover from heart attacks are being prescribed as they should be. Yet few good measures exist to assess whether the care that patients receive near the end of life is consistent with their own goals and wishes. New measures would hold individual clinicians and health systems accountable for the type of care delivered near the end of life.

Additionally, both bills would direct Medicare to launch new models that integrate palliative care and supportive services, such as home health care and counseling, as recommended by the Institute of Medicine in its landmark 2015 report, Dying in America.

Improving end-of-life care will require all sectors of the health care system, including private insurance companies, hospitals, individual doctors, and patients, to work together. We can do our part by having frank conversations with our families and physicians. But Congress must also act by passing policies such as those contained in these two bipartisan bills, which are designed to help seriously ill patients get the kind of care they want.

Lee Goldberg directs The Pew Charitable Trusts’ improving end-of-life care project.

This editorial originally ran in The Hill’s Congress Blog on July 8.