The missed opportunities of palliative care
Palliative care is a growing field in medicine that gives patients with serious illness relief from symptoms, pain, and stress, to improve their quality of life. Palliative care is more than end-of-life or hospice care; it can be provided at any stage of illness and can be given alongside curative treatment.
“Palliative care is attending to the physical, emotional and spiritual suffering of patients and families,” said Dr. Sunita Puri, palliative care specialist at the University of Southern California and author, in an NPR interview. To attend to all of these needs, palliative care teams often include not only a doctor and nurse, but also a social worker, physical therapist, nutritionist, and chaplain.
“Palliative care is attending to the physical, emotional and spiritual suffering of patients and families,” – Dr. Sunita Puri
Palliative care teams provide unique support to patients that medical teams alone may not be able to do, such as helping patients articulate their treatment goals and life goals, tending to the emotional struggles and anxiety of dealing with a serious illness, and sometimes simply lending an ear to patients’ and families’ concerns.
“I think there is something about our field — focused on being silent and listening to people — that is deeply therapeutic for the vast majority of my patients,” said Puri.
The therapeutic benefit of palliative care is reflected in patient outcomes. A wealth of evidence shows that palliative care improves patients’ quality of life, reduces symptom burden, improves patient and family satisfaction, and reduces unnecessary health care services. Some studies find that palliative care can even improve survival in patients with advanced cancer.
Despite these benefits, palliative care is vastly underutilized. According to the Center to Advance Palliative Care 2015 Report Card, access to palliative care is increasing, but about one third of hospitals with fifty or more beds still have no palliative care services available. A recent article in JAMA found that rates of palliative care referrals for patients with cardiovascular disease from cardiologists actually declined between 2015 and 2017.
Rates of palliative care referrals for patients with cardiovascular disease from cardiologists actually declined between 2015 and 2017.
Lack of access to palliative care is partly a supply issue. While the field is growing, there is currently only one palliative care specialist for every 20,000 older adults with a severe chronic illness. Experts cite lower pay and lack of fellowship programs as reasons behind the shortage of palliative care specialists. Even when palliative care is available, patients’ insurance may not always cover the cost, because they aren’t considered “near death,” or because multidisciplinary services like mental health care are not covered.
However, there is also a significant lack of awareness among clinicians and patients about the benefits of palliative care and when this type of care can be offered. Many patients and families may avoid palliative care or hospice because there is an expectation to “fight” illness, even if it is harmful to their quality of life. “People feel an obligation, if they identify as a fighter, to keep trying any and every treatment offered to them — sometimes without a full appreciation of the risks of those treatments,” said Puri.
This attitude is not limited to patients; physicians also struggle to go beyond the “fight or give up” binary. Often stressed for time and lacking clear guidelines for when to offer palliative care, physicians often default to doing everything, writes hospice nurse Theresa Brown in a New York Times op-ed. “Our society makes admissions of medical futility in the face of human frailty harder by equating ‘cure’ with ‘fighting back’ and ‘comfort’ with ‘giving up,'” she writes.
“Our society makes admissions of medical futility in the face of human frailty harder by equating ‘cure’ with ‘fighting back’ and ‘comfort’ with ‘giving up'” — Theresa Brown, RN
Part of making palliative care more accessible is expanding the culture of medicine to valuing more than survival. “In medicine, death is seen as an obstacle to be overcome and physicians are seen as conquerors of death,” said Dr. Ray Barfield, professor of pediatrics and Christian philosophy at Duke University. “Medicine has no concept of valuing what matters to you in life. Medicine’s only answer is don’t die.”
Increasing availability, coverage, and awareness of palliative care should be key goals for improving quality of life and care for patients with serious illness. We also should push back against descriptions of disease as a battle to be won and acknowledge the emotional and mental challenges of living with disease. This shift can happen in medical training, but also by sharing stories, like Jeopardy host Alex Trebek has done by speaking out about the effects of chemotherapy on his mental well-being.