“The goal is not a good death. Instead, the goal is to have as good a life as possible all the way to the very end.” That was the message Dr. Atul Gawande, surgeon and author of the New York Times best-selling book, Being Mortal, delivered at a recent Senate Aging Committee hearing that I chaired. Our hearing explored ways to not only expand, but also to improve, the care provided to the approximately 90 million Americans who are living with a serious, often life threatening, illness.
Advance care planning conversations are critical to the physical, emotional, social, and spiritual well-being of any individual living with a serious illness. These important life conversations among the patient, the family, and the health care provider help to ensure that an individual’s wishes are known and that the care they are receiving is consistent with the care they want.
Dr. Gawande noted during the hearing that people with serious, potentially life-limiting illnesses may face substantial suffering, particularly during the last year of life. As he said, “Medical care today typically exacerbates this suffering, often without any benefit of lengthened life. We have an opportunity to change this.”
That point was underscored by another of our witnesses, Amy Berman, a nurse and senior program officer at the John A. Hartford Foundation, a national health care foundation focused on improving the care of older adults. Ms. Berman is living with stage IV inflammatory breast cancer. In her powerful testimony, Ms. Berman discussed her experience and emphasized the importance of palliative care, calling it “the best friend of the seriously ill” that helps “people feel better and live longer.” Palliative care focuses on addressing the pain and stress of a serious illness and improving the quality of life for both the patient and the family.
When she was first diagnosed, Ms. Berman was fortunate to meet with an oncologist who asked her an important, but too often uncommon, question: What did she hope for? In response, Ms. Berman told her doctor that she wanted to hold onto the life she had, maximizing her good days and avoid aggressive treatment that would decrease the quality of those days. Her doctor understood her desire to live the life she had left to the fullest and designed a personalized care plan consistent with her wishes, which excluded debilitating, aggressive treatments and surgeries that offered no hope for a cure.
When Ms. Berman received her diagnosis, it was highly unlikely that she would survive five years; yet, here she was testifying before our Committee a full five and a half years later! As a result of palliative care, she is able to work full time, travel, and enjoy her family and friends despite her illness.
I, too, have seen the benefits of care planning. A few years ago, one of my dear friends was a patient at the Gosnell Memorial Hospice House in Scarborough. Despite her serious illness, her remaining days were filled with visits from friends and family, and many joyful moments. She died peacefully, surrounded by her family just as she had wanted.
As Ms. Berman noted in her testimony, however, this type of person-centered care is unfortunately the exception. While a majority of Americans say that they would prefer to die at home, most people still die in the hospital. In addition, studies reveal that less than one-third of physicians report that their practice or health care system has a formal program for assessing patients’ goals or preferences.
We must work to ensure that our federal policies support efforts to relieve suffering, respect personal choice, and provide opportunities for people to find meaning and comfort during serious illness, and – most important – remain in control of their own care.
Dr. Gawande truly put it best when he said that the most effective and important way to learn about an individual’s priorities is to ask the individual directly. It is essential for families and health care providers to have these important conversations so that individuals’ wishes are known and reflected in their treatment, and that family members can rest assured knowing that their loved one is receiving the care they want.