End-of-Life Decision-Making

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The care Americans say they want near the end of life differs significantly from the care they often receive.

In some instances, certain medical treatments commonly used near the end of life can diminish a patient’s quality of life rather than improve it. That’s the conclusion of experts interviewed for a recent article in The Washington Post, which takes a close look at interventions such as resuscitation, dialysis, and feeding tubes.

The care Americans say they want near the end of life differs significantly from the care they often receive. Polls consistently show that if given the choice, a vast majority of Americans would prefer to die at home, surrounded by family and loved ones. Yet 70 percent die in hospitals, nursing homes, or long-term care facilities, often after receiving unwanted medical treatment in their final days.

As we know from the 2014 Institute of Medicine report Dying in America, most people do not have advance care plans, which document their wishes for end-of-life care and help health care professionals determine appropriate medical treatments. Complicating matters is the fact that most people nearing the end of life are not physically or cognitively able to make their own decisions about care. As a result, many patients receive procedures they may not want as family members and caregivers are forced to guess what their loved ones would prefer, and are left wondering if they made the right choices.

The Pew Charitable Trusts is working to improve end-of-life care by advocating for policies that will help patients and families make informed decisions, document their preferences, and put a plan in place that allows for the best quality of life. We are collaborating with federal policymakers to ensure that physicians and other clinicians are able to locate and read patients’ advance care plans. We are also supporting legislation to develop initiatives that would offer greater access to palliative care, also known as comfort care, as well as measures that evaluate whether care was consistent with patients’ expressed preferences and goals.

As the authors of the Post article note, invasive, uncomfortable, or painful treatments such as dialysis or feeding tubes may not provide the quality of life that patients often seek at the end of life. Having an advance care plan in place, while individuals are still capable of making their own decisions clear, is the best way to ensure that the treatment provided matches patients’ goals and preferences.

Lee Goldberg directs Pew’s improving end-of-life care project.