When former President Jimmy Carter announced earlier this year that he was opting for hospice care rather than continued medical intervention, it put a spotlight on this kind of end of-life care. And for many people it raised a question: What is hospice care? And how does it differ from palliative care? It is best to start with some basic definitions, says Jeannie Meyer, a UCLA Health clinical nurse specialist in palliative care.
Palliative care is a resource for anyone living with a serious medical condition. “We can help with things like controlling their symptoms and having what we call the ‘goals-of-care’ discussion,” Meyer says. “Our initial goals-of-care discussions are focused more on what gives you joy, what gives you meaning, what is a really good, acceptable quality of life for you? Just so we have some idea of who this person is.”
Hospice, she says, “is a subset of palliative care. It is for people whose prognosis for survival is six months or less. Hospice care begins when individuals opt to forego further disease-modifying treatments in favor of focusing on comfort.”
Palliative care starts with conversations between patients and their care providers, both primary care and treating specialists, to outline what Meyer calls the patient’s “line in the sand.” “They share what brings meaning to their lives or gets them out of bed in the morning, and what they want to have happen if that line in the sand can no longer be reached,” Meyer says.
It is not a static decision; it is one that evolves as a patient’s condition changes, Meyer says. She recalls one patient who said he didn’t want to go on if he could no longer surf. But as his condition evolved, he changed his mind and said that as long as he could be on the beach ,his life was worth living. Another patient said her line in the sand was being able to sit up on her own and watch true-crime shows on TV.
People can receive palliative care for months or years. Studies show that palliative care leads to better outcomes and longer lives, Meyer says. And, she adds, many people who receive palliative care recover. “Many of the things we do to get people well can be difficult or even painful,” Meyer says, citing treatments such as chemotherapy or dialysis. “Sometimes It can be very peaceful and very liberating to say: Everything I do from here on in is concentrated on comfort, being with significant others, being cared for and may be squeezing in some last opportunities. Even if we can no longer cure, we can provide comfort.”
Hospice, on the other hand, is geared toward imminent end-of-life care. But it, too, is dynamic. If an individual’s condition improves and they want to look in to treatment again, they can return to more active interventions and palliative care. “The patient is in the driver’s seat throughout this whole journey,” Meyer says. “Their physicians and our staff are with the min the passenger seat, holding their hands. We are helping guide them while at the same time helping with symptom management.
”It is important that anyone who wants to consider palliative or hospice care fill out an advance health care directive that details their wishes. An advance health care directive, which does not require an attorney, is a legal document that provides instructions for a patient’s medical care should they be unable to make decisions or communicate their wishes. It allows people to put their personal “line in the sand” in writing and express what constitutes an acceptable quality of life for them, what should be done if they can’t achieve that quality of life and are no longer able to speak for themselves, and also identify who should make health care decisions on their behalf, Meyer says. “I am a firm believer that anybody over the age of 18 and emancipated minors should have an advance directive,” she says.
