“The vast majority of patients who need palliative care are not dying. They are debilitated by things like arthritic pain that affect the quality of their lives and ability to function, and can eventually impact their survival,” says Dr. Diane E. Meier, a palliative care specialist at Mount Sinai Medical Center in New York.
However, there is a general misunderstanding of what palliative care is by the public as well as within the medical community. Both incorrectly link it to hospice and end-of-life care. “Hospice is a form of palliative care for people who are dying, but palliative care is not about dying. It’s about living as well as you can for as long as you can,” says Dr. Meier.
Jane Brody, writer on health and aging for the New York Times says palliative care would have helped her following a double knee replacement. Instead, the lingering pain left her depressed and unable to resume a normal life for additional weeks. And, says Brody, “If my elderly aunt had access to palliative care when she was placed in intensive care, she might not have become delirious and suffered an abrupt progression of dementia from which she never recovered.”
In 2011 a survey of 800 people commissioned by Dr. Meier’s center found that 70% were “not at all knowledgeable” about palliative care. Yet once informed, most believed that it was “very important for patients with serious illness to have access to palliative care at all hospitals,” and that it was relevant at any age and any stage of a serious illness.
Unfortunately, there is a shortage of doctors trained in it, and few medical students and residents study it. “Most doctors in practice today were trained more than 20 years ago, when palliative care didn’t exist,” says Dr. Meier.
Among older Americans, 90% of visits to emergency rooms are for symptoms including pain, shortness of breath and fatigue that may occur with chronic illness. Dr. Meier believes these symptoms can be prevented or managed by palliative care specialists at home. “Patients turn to hospitals for care because they have no alternative,” she says.
A palliative care team is made up of doctors, nurses, and social workers. The goal is to help patients live in their homes for as long as possible, having a reasonable quality of life. The website www.getpalliativecare.org can help find nearby hospitals with a palliative care team. Most American hospitals with more than 50 beds offer palliative care, but patients and their families may need to ask about it.
Palliative care concentrates on relieving the suffering of patients, and not just for those who are dying. Whether they are terminally ill, expected to recover fully, or faced with painful symptoms of a chronic disease, it can significantly raise the quality of life for patients…… nytimeshealth December 2, 2013