No one likes talking about dying, but Stephanie Pincus, MD, MBA, believes we all need to do more of it. Pincus is one of the key people who participated in the work that resulted in a new Institute of Medicine committee tasked with exploring and preparing a report on the current state of end-of-life care in the country. The committee’s ultimate goal is to ensure that people are able to die as they wish.
“People do not want to die alone, in a hospital bed, hooked up to 15 different machines, with buzzing in their ears. They want to be with their families in familiar surroundings, able to say their good-byes peacefully,” Pincus, who recently gave a talk at the medical school sponsored by the Stanford Palliative Care training program, told me.
“Until about 100 years ago death was part of life. In early times in the U.S. when someone died they were laid out on the kitchen table,” she continued. “But as we moved medical care to the hospital, death became isolated and isolating. We need to reclaim death from the hospital and reintegrate with the family.”
The medical field’s emphasis on providing appropriate end-of-life care dates back to around 45 years ago, with the start of the hospice movement, Pincus said. (Hospice focuses on symptom management, instead of disease management, with a goal of helping the patient “have peace, comfort and dignity” at the end.) But there was a recognition in the late 1990s that medical professionals didn’t always fully understand or carry out their patients’ wishes, and the IOM issued a major report on the issue in 1997.
We need to reclaim death from the hospital and reintegrate with the family
“Approaching Death: Improving Care at the End of Life” laid out a number of principles and recommendations, among the main points being that people should expect high-quality compassionate care at the end of life and that health professionals should “understand that [those who are terminally ill] are not patients for whom ‘nothing can be done.'” The report also recommended the establishment of palliative care as its own specialty.
But, Pincus said, “fifteen years later, we still have a lot of issues with getting end-of-life care.” As described on the IOM’s website, “coordinated expert, compassionate care for people dying from chronic diseases continues to challenge the American health care system.” And Pincus said the biggest hurdle to this type of care is the recognition that what often happens at the end of life – that is, the administering of medical care when there is no hope of a turn-around – “is bringing unnecessary pain and suffering to patients.” In addition to this costing a lot of money, Pincus said dying patients are subjected to burdensome and ineffective technical interventions that erode the quality of their lives.
Pincus noted that in recent surveys, 86 percent of people said they believe end-of-life care should be a priority, and more than 90 percent believe hospice should be a priority. In their report, then, the committee members will evaluate strategies and provide policy and clinical recommendations to improve the current situation and to “integrate end-of-life care into a person-centered, team-based framework.” There will also be a public-communication component to the report, Pincus said, referencing the recent controversy over “death panels” and the fact that misinformation and “inflammatory language is still embedded in people’s heads.”
Pincus also mentioned the importance of educating families on the benefits of letting a loved one go peacefully, instead of pushing for unnecessary medical interventions at the end: “We need to work on making sure that those family members understand that as death is approaching, nothing has a realistic chance of being successful.” And she urged for early dialogue about the patient’s wishes: “Most family members want to do what the dying person wants. But it’s important that discussions begin way before the end of life to understand what that really is.”
Previously: The importance of patient/doctor end-of-life discussions, A Stanford nurse shares her experience in talking to her aging mother about end-of-life decisions, Talking about a loved one’s end-of-life wishes and Helping caregivers practice palliative care