Anyone faced with a life-threatening or chronic illness should be so lucky as Catherine, a 27-year-old waitress in New York.
Dr. Diane E. Meier, a palliative care specialist at Mount Sinai Medical Center, recalled her young patient’s story in an article published in 2011 in the Journal of Clinical Oncology. Catherine, who was not further identified to preserve her privacy, was diagnosed with leukemia and suffered intractable bone pain, unrelieved by acetaminophen with codeine.
Still, she was unwilling to take opioids to relieve the pain because a family member had problems with substance abuse. Meier and her team were called in to help, and their counsel allayed the young woman’s fears of addiction and helped her understand that pain relief was an important part of her treatment. Catherine recovered.
Her story, Meier wrote, told us something about the importance of palliative care: Her doctors were focused on curing her cancer, but it was her suffering that “posed significant – but remediable – burdens on the patient.”
Palliative care physicians like Meier focus on the relief of that suffering, and not just for the dying. All patients deserve palliative care whether they are terminally ill, expected to recover fully, or facing years with debilitating symptoms of a chronic or progressive disease.
“The vast majority of patients who need palliative care are not dying,” said Meier, director of the Center to Advance Palliative Care. “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.”
If I had received palliative care following my double knee replacement, I might have avoided the serious pain that left me depressed and unable to resume a normal life for many more weeks than it should have. 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.
The benefits of palliative care include fewer trips to the emergency room or hospital, lower medical costs, improved ability to function and enjoy life and, several studies have shown, prolonged survival for the terminally ill. These virtues far outweigh what it would cost to make this service universally available in hospitals, nursing homes, clinics, assisted living facilities and patients’ homes.
But there are two major stumbling blocks, one of which patients and their families can help to eliminate. First is the widespread misunderstanding of palliative care by the public and the medical profession: both wrongly equate it with 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,” Meier said. “It’s about living as well as you can for as long as you can.”
A 2011 survey of 800 adults, commissioned by the center, found that 70 percent were “not at all knowledgeable” about palliative care. But once informed, a similar percentage believed that it was “very important for patients with serious illness to have access to palliative care at all hospitals,” and that such care was appropriate at any age and any stage of a serious illness.
The second obstacle to making palliative care more available is a shortage of doctors trained in it. It was first declared a medical specialty in 2007, but even today few medical students and residents receive instruction in this field despite its importance to the quality and cost of medical care.
Other specialists too seldom request this service for patients who need it, researchers say. Many still believe palliative care is appropriate only when nothing more can be done to treat a patient’s disease and prolong life. But unlike hospice, palliative care can and should be delivered while patients continue treatment for their diseases.
“Most doctors in practice today were trained more than 20 years ago, when palliative care didn’t exist,” Meier noted.
Under the Affordable Care Act, hospitals now face huge penalties when Medicare patients are repeatedly readmitted for chronic or recurrent conditions. This is expected to boost the use of palliative care, which has been shown to reduce patients’ dependence on emergency rooms and need for hospitalization. Palliative care is also available in a growing number of children’s hospitals.
Palliative care is not limited to direct medical care. It includes help in accessing community services, obtaining affordable health care and living assistance at home, ensuring a safe environment in the home, and determining what is most important to a patient’s quality of life and how those goals might be achieved.
A typical palliative care team includes doctors, nurses and a social worker to help patients and their families navigate complex needs both in a medical setting and at home. The goal, whenever possible, is to help patients live in their own residences for as long as possible and enjoy a reasonable quality of life.
Meier urges patients and families to check whether there is a palliative care team at the hospital they would normally use. If not, go to a hospital that has one and let the first hospital know why. Check the website getpalliativecare.org for nearby hospitals with a palliative care team. There are five options in the Buffalo area.
Palliative care services in both medical settings and patients’ homes are covered by private insurance, Medicare and Medicaid, depending on the patient’s reason for seeing a doctor.