“Palliative care” is a misunderstood term, but not for much longer if we can help it.
For the record, palliative care is not hospice care, in which patients and families are provided comfort in the final days and weeks of life. Hospice is incredibly important, meaningful care and ideally part of a longer term palliative care strategy. The goal of palliative care teams—nurses, physicians, chaplains, and others—is starting early, and maintaining quality of life for as long as we can. Sometimes that means to the point of a cure or a recovery but also death and dying.
Palliative care begins as soon as there is a cancer diagnosis, say, or when a chronic heart condition begins to affect the quality of life, or when a patient is too sick to come to the hospital. It is also when a patient in a hospital bed at 3 a.m. (or a family in a neonatal intensive care unit) has had time to allow a potentially frightening prognosis to sink in.
It is about health care teamwork, and in a very big way it is about education—of patients and families, naturally, but also of nursing and medical students as well as policy makers. This is why we take great pains to instill in every student a feel for when and how to step in. Such care is as crucial and might one day be as expected by patients as it is exceptionally rewarding for nurses.
Recently, Marie Nolan, professor and executive vice dean here at the Johns Hopkins School of Nursing, led a panel on palliative care that got right to the core of why, when, and how to do it right. One of the panelists was Betty Ferrell, director of the Division of Nursing Research and Education at the Beckman Research Institute of City of Hope:
“I am about to tell you the golden, absolute definition, and that is: ‘Palliative care is the kind of care that you would want if someone you loved was seriously ill.’ Because the moment you say that, then it all makes sense. … ‘Oh, well, I’ll tell you right now. I want their symptoms well controlled. I would want support for my family. I would want spiritual care. I would want care that really respects who we are as a family.’ … At its core, palliative care is really very much what we now call patient-centered care, based on the values and goals of patients and families.”
At Johns Hopkins Nursing, faculty and students meet monthly to discuss the core skills clinicians need to integrate palliative care into their practice, because nurses are especially equipped to provide patient-centered care. Betty Ferrell points to nurses in the oncology unit helping patients bolster their nutrition before they begin chemotherapy.
Meanwhile nursing researchers like Sharon Kozachik and Gayle Page work to break the pain and sleeplessness cycles that can complicate care of people with otherwise treatable illnesses. Proper palliative care really does take a village, after all.
With U.S. health care in such turmoil these days, we also must point out the cost savings of guiding patients and families through illnesses on a prescribed path that can avoid devastating and expensive emergency procedures. As Thomas Smith, professor of palliative care and oncology at Johns Hopkins Medicine, reminds us: “Palliative care doesn’t cost more. In fact, it sometimes has substantial cost savings, particularly toward the end of life. But that’s not the reason to do it. The reason to do it is to take better care of patients and their families.”