By Carol Levine
Carol Levine directs the Families and Health Care Project at the United Hospital Fund, which focuses on improving transitions in care by building partnerships between family caregivers and health care professionals.
Often this transition means adding palliative care to a curative approach or moving to hospice. Hospice is relatively easy to explain—basically six months’ life expectancy, federal guidelines, Medicare coverage, no treatments designed to cure, and supportive measures only. Palliative care is more variable and harder to explain. Even the most health-literate among us, including health care professionals, have difficulty. The ability to understand basic health information is the cornerstone of health literacy; but for patients and families, that may be a lot easier than understanding services, which are constantly changing and subject to institutional and insurance rules.
What is palliative care?
Here’s the definition of “palliative care” from the Center to Advance Palliative Care’s website, GetPalliativeCare.org: “Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.”
Although this definition doesn’t say exactly what might or might not be included in palliative care, it does stress the key elements, which are a focus on symptom relief and improved quality of life. For many people the key is that palliative care can be provided along with curative treatment (which is not allowed in hospice, although Medicare is setting up some demonstration projects to see how that combination might work).
So why is palliative care so hard to understand?
There are several possible reasons, starting with the word itself. “Palliative” is a perfectly good English word, meaning “making less harmful or harsh.” Dr. Balfour Mount, the Canadian surgeon who coined the term “palliative care” knew exactly what he meant by it. But “palliative” is not a word most people use in ordinary conversation. It is:
- Hard to pronounce (pall-lee-uh-tiv or pale-lee-uh-tiv or pall-ya-tiv?)
- Hard to spell
- Subject to different interpretations by different professionals:
- Palliative care doctors—Board-certified subspecialty of internal medicine
- Primary care doctors—good medical practice
- Home care nurses—ordinary care for sick people
- Nursing home staff—keeping resident comfortable
The challenge is even harder for patients and family caregivers who have to unlearn misinformation before learning what palliative care is and what it offers. Some of the prevailing myths about palliative care are that:
- It is only for dying people
- It means giving up hope
- It’s just a way for the system to save money
- You have to be in a hospital to get it
Beyond the specific meaning of “palliative care services,” the term has an intense emotional component, which can cloud comprehension. For family caregivers, it may mean making health care decisions with or for another person, not for themselves. There may be different levels of understanding or acceptance within families. On a practical level, family caregivers may be concerned about being able to pay for services at home, as well as being able to provide the often complex care involved.
How can communication be improved?
Patients and family caregivers need accurate, easy-to understand information. Health care professionals can do a better job in preparing patients and family caregivers for the transition to palliative care by starting discussions early, not when there is a crisis. They should use a simple definition and emphasize the benefits in terms of pain and symptom relief and improved quality of life. Listening to patients’ and families’ concerns at every stage can head off crises and conflicts. With a professional as a trusted and responsive guide, the transition to palliative care can be more satisfying for everyone.