“How should health care be restructured to better address end-of-life care?”
There is increasing agreement on a few basics about how we in health care mishandle care not only at the end of life but also for frailty, chronic illness, and other, often inevitable, circumstances of mortal beings. Medicine has failed to recognize that people have priorities besides just living longer—such as the desire to avoid cognitive impairment, to live at home instead of in an institution, to complete major life goals, or to simply be with their dog. The most reliable way to find out what those priorities are is to ask. Living wills rarely spell these matters out sufficiently well to guide care. When conversations about patients’ priorities take place, the results are often transformative—providing far clearer direction to clinicians, families, and patients themselves for the many decisions that must be made when quality of life is at risk.
To be most effective, these conversations must be repeated over time (because priorities change), must be respected and communicated to others, and must be valued as a norm. Such conversations also take skill. It is increasingly clear, for instance, that clinicians do not communicate prognoses well and spend too little time asking essential questions such as what their patients’ fears and worries for the future are, what their most important goals are, and what tradeoffs they are willing to make—and not willing to make. Professionals need better preparation in these skills. And regardless, patients can, and should, insist that their end-of-life priorities are known and respected.
To make this kind of care happen, a variety of changes are necessary in health care. Medical schools, residencies, and fellowships need to provide teaching in and practice with these basic skills. Health systems should support palliative care departments that not only provide patients with consultations but also provide staff with ongoing coaching and practice in these skills. Information systems should make it easy for clinicians who meet patients in emergency settings to find documentation about patients’ priorities as well as their medical histories. Payment systems should enable physicians to take sufficient time for advance care planning with patients. And we need to actually begin tracking a fundamental measure of the humanity of our care: How many patients feel that their doctors know and respect their priorities in life?
Too often, our debate about end-of-life care is a debate about how people should die. But that is the wrong focus. The goal is not a good death. It is to live as good a life as possible, all the way to the very end.
Atul Gawande ’94 is an HMS professor of surgery, a professor in the Department of Health Policy and Management at the Harvard School of Public Health, a surgeon at Brigham and Women’s Hospital, and director of Ariadne Labs: A joint center for health systems innovation. He is also the author of Being Mortal: Medicine and What Matters in the End (Metropolitan Books, 2014).
Longstanding practice patterns, financial incentives, and our cultural proclivities align to create and maintain systems of care that are failing patients near the end of life. The seriously ill receive poorly coordinated care by numerous specialists, but have no one to help them develop sound goals appropriate to their circumstances. Current Medicare rules incentivize technological interventions but do not cover the high-touch, low-tech logistical and social supports that frail elders need. Cardiopulmonary resuscitation, dialysis, and time in an intensive care unit have become near rites of passage for the dying; for many, these interventions and care settings confer no benefit, and may even be harmful.
Individual clinicians can ameliorate these problems by initiating conversations with patients about appropriate goals of care and integrating palliative care consults earlier in the course of treatment. But individual clinicians cannot fix these problems. Instead, we must take a systems approach and reset the “defaults.”
In most hospitals, for example, the default is that you will receive CPR unless you, or a surrogate, expressly opt out. This approach creates confusion and leads many to insist upon CPR in circumstances where resuscitation attempts are likely not to work, or worse, to cause harm. In a 2012 paper in the Journal of the American Medical Association, my colleagues and I called for a new approach that would likely create greater patient and family understanding while reducing the overuse of CPR. Rather than insisting that CPR be the default that patients must opt out of, we urged physicians to assess the ratio of burden to benefit that CPR would likely offer a given patient, and then take one of three approaches: discuss CPR with the patient and family as a plausible option, recommend against CPR, or not offer CPR. Not offering CPR should be explicitly permitted by hospital policy, and the decision to not offer it should be explained to the patient or surrogate.
There are other examples of ways we are practicing care near the end of life that are not in a patient’s best interests. Our system currently allows certain nursing home residents—often those with advanced dementia—to be sent to hospitals to have feeding tubes inserted, despite the evidence that feeding tubes do not reduce aspiration pneumonia in this population. These transfers increase health care costs and may exacerbate the dementia. There is also growing evidence that thousands of patients are referred for dialysis without adequate discussion about what it can and cannot do for them. Physician leaders should reach beyond medicine to engage with systems engineers, behavioral economists, nurses with quality improvement experience, and professionals in other disciplines to plan new pathways of care better suited for those in the final phase of life.
Progress must also take place in what we pay for and how. Health care leaders are well positioned to call on Medicare to reconsider its reimbursement priorities. Financial penalties for hospital readmissions may not be welcomed by all, but they can be an impetus for enhanced continuity of care across acute, long-term, and home care settings. Likewise, with accountable care organizations receiving capitated payments for a given population, there is now the incentive to shift from providing more care to providing more appropriate care. Of course, the risk of doing too much could then become the risk of doing too little. We therefore need to monitor such approaches closely to ensure that they bring the benefits they promise, especially for people near the end of life.
Mildred Z. Solomon is an HMS clinical professor of anaesthesia at Boston Children’s Hospital, director of the fellowship in medical ethics for the School’s Center for Bioethics, and president of The Hastings Center in Garrison, New York.
The opinions presented are those of the contributors and do not necessarily reflect those of the President and Fellows of Harvard University or the publishers of Harvard Medicine magazine.
Images: Tim Llewellyn (A.Gawande); Countesty of Mildred Solomon