Two announcements from the Centers for Medicare and Medicaid Services (CMS) represent welcome news in the long struggle to improve end-of-life care. One long-awaited change will reimburse physicians and other professionals, such as nurse practitioners and physician assistants, for conducting advance care planning with patients who wish to do so. The other change will expand the Medicare Care Choices Model, allowing more patients to receive services under the Medicare Hospice Benefit without forgoing interventions aimed at curing or controlling a terminal illness. This “Medicare moment” is an opportunity to include the 2.5 million people who die in the United States each year, and the millions of others who will be diagnosed with a life-threatening, usually age-associated condition, in health care system improvement, and to build on the American public’s hunger for better care as we near the end of life.
What, then, must we do to make sure these reforms stick, and to tackle the problems in end-of-life care that these reforms do not address?
First, we must get serious about training for health care providers who care for older Americans, so they are prepared to discuss patients’ end-of-life care preferences and support surrogate decision-makers who face the prospect of making decisions reflecting these preferences. Research, including a recent study published in JAMA Oncology, has shown again and again that simply completing forms or choosing a proxy does not provide a family member, or future health care providers, with the information they need to guide decision-making under stressful, real-life conditions. When decision-makers are confused about what to do for a dying patient, interventions escalate, a situation Atul Gawande, in his bestseller Being Mortal, rightly terms a “modern tragedy.” Now that Medicare has removed a financial barrier to health care providers holding advance care planning conversations, providers must acquire and practice certain basic skills. These skills include how to conduct an effective advance care planning process with a patient and, whenever possible, with this patient’s surrogate decision-maker; how to review and update advance care plans and explain options, including hospice, and how to integrate this ongoing process into appointments. Proven resources include the Respecting Choices program developed by Gundersen Health System, and the Alzheimer’s Association, which offers guidance on how to conduct advance care planning with patients with early-stage dementia. The Physician Orders for Life-Sustaining Treatment (POLST) model is a key resource when a patient faces foreseeable medical emergencies.
Second, professional societies that include providers who care for Medicare patients should make advance care planning, including explicit attention to how to discuss end-of-life care preferences, part of professional standards. Professional societies can create targeted resources, including mentoring, web-based education, and conference workshops, to help providers develop their skills and integrate them into practice. The American Society of Clinical Oncology and the American Association of Family Physicians are among the societies that have already begun to offer advance care planning guidance to their members. A new partnership between The Hastings Center and the Society of Hospital Medicine, aimed at improving end-of-life care in the hospital, will include guidance for frontline hospital clinicians on how to discuss care preferences as a patient’s condition changes. Advance care planning should also become an priority for Accountable Care Organizations (ACOs) and other networks that include hospitals, outpatient clinics, and medical groups, so care preference information elicited when patients are relatively healthy can actually inform their future care across different health care settings. There is not one “conversation” about the end of life, but many, over time, and our health care systems need to support ongoing discussion about issues that can be hard to talk about.
Finally, we know that people nearing the end of life often need a combination of medical and social services that are not fully covered by Medicare, state Medicaid programs, or private insurers. There is growing recognition that the long trajectory of frailty and dementia, combined with the size of the aging baby boomer generation, demands an infrastructure – ranging from respite programs and transportation, to home health aides and home care supplies, to residential care facilities – that our current health care workforce, facilities, and insurance mechanisms do not begin to meet. It is crucial to ask people about what they want. It is also crucial, as a matter of fairness in an aging society, to ensure that we have the capacity, now and in the decades ahead, to give people what they will need at the end of life.