According to a report released Sept. 17 by the Institute of Medicine, the U.S. healthcare system is not properly designed to meet the needs of patients nearing the end of life or those of their families. The IOM report calls for major changes to the system.
The 21-member Committee on Approaching Death, which wrote the report, envisioned an approach to end-of-life care that integrates traditional medical care and social services and that is high quality, affordable, and sustainable. The committee called for more advance care planning by individuals, improved training and credentialing for clinicians, and for federal and state governments and private sectors to provide incentives to patients and clinicians to discuss issues, values, preferences, and appropriate services and care.
“Patients can, and should, take control of the quality of their life through their entire life, choosing how they live and how they die, and doctors should help initiate discussions with their patients about such decisions,” said Philip Pizzo, co-chair of the committee and professor of Pediatrics and Microbiology and Immunology at Stanford University. “For most people, death does not come suddenly. Instead, dying is a result of one or more diseases that must be managed carefully and compassionately over weeks, months, or even years, through many ups and downs. It is important that the healthcare options available to individuals facing the end of life help relieve pain and discomfort, maximize the individual’s ability to function, alleviate depression and anxiety, and ease the burdens of loved ones in a manner consistent with individual preferences and choices.”
Americans express strong views about end-of-life care. In general, they prefer to die at home and want to remain in charge of decisions about their care. However, the vast majority of Americans have not engaged in an end-of-life discussion with their healthcare provider or family. A 2013 national survey of adults found that while 90 percent believe having family conversations about end-of-life wishes is important, fewer than 30 percent actually have done so.
The committee proposed a model for advance care planning, which encompasses the whole process of discussing end-of-life care, clarifying related values and goals, and seeing that written documents and medical orders embody patients’ preferences.
For more information, go to iom.edu/endoflife.
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