In the days after former First Lady Barbara Bush announced she was no longer going to seek additional medical treatments, public interest in “comfort care” rose dramatically. Internet searches for the phrase more than doubled in the days before and after Mrs. Bush’s death.
But what is comfort care? And what does it mean to choose that course? For answers, we talked to Lori Bishop, M.H.A., B.S.N., R.N., C.H.P.N., who is the vice president of palliative and advance care at the National Hospice and Palliative Care Organization, and Kate DeBartolo, director of The Conversation Project (an initiative of the Institute for Healthcare Improvement), who saw traffic to her group’s website take a “huge jump” in April as a result of Mrs. Bush’s news. The two agree that comfort care isn’t an easy subject to think about or bring up, but once you do, it can be surprisingly empowering. Here’s what they want you to know.
What is comfort care, and how is it different from hospice care?
The technical term for comfort care is “palliative care,” says Bishop. Palliative care can begin whenever someone has been diagnosed with a serious illness, such as kidney disease, cancer, or chronic heart failure. The goal of a palliative care team is to improve the patient’s quality of life for the duration of the illness, and to help the patient and the family cope with the stress that accompanies any tough health condition.
“In palliative care,” she explains, “the conversations you have with your medical team and caregivers focus on what matters most to you.” For some, that means ending any course of treatment aimed at curing the disease and focusing instead on preventing and treating suffering, but many people who choose comfort care continue to receive life-saving and life-extending treatments. Palliative care also addresses other big concerns, including financial difficulties, logistical concerns (such as transportation or rearranging the home environment), family dynamics, and the emotional aspects of facing a serious illness.
“With palliative care, you’re getting a team of doctors, nurses, caregivers, social workers, therapists, pharmacists, even chaplains,” says Bishop. “Palliative care at its core is coordinated care.”
Hospice care is a subset of palliative care; hospice caregivers are focused on improving the quality of life for patients with a terminal illness.
So, my doctor has this handled right?
No: You have to talk to your doctor and loved ones about what’s important to you. They don’t know what you don’t tell them. That’s where DeBartolo and The Conversation Project come in. “Your doctor might be treating a dozen different patients with Alzheimer’s disease, and those 12 patients will all have different ideas about how they want their care plan to be laid out,” says DeBartolo. “There is no one-size-fits-all in medicine. That’s why it’s so important for everyone—sick or well—to have a discussion about end-of-life care.”
She can recount story after story of families who’ve only made it as far as, “Dad says if it gets to this point, just pull the plug,” or, “He wants the whole enchilada of care.” However, DeBartolo says, “Those statements aren’t helpful to your loved ones, because most often there’s no plug to pull.” What’s more, you should have the conversation more than once because your wishes might change over time or when faced with new circumstances.
“Have the conversation with yourself first, then with those closest to you,” she says. “The hardest part is going to be bringing it up, but once you’ve broken the ice, having this talk can be a positive experience for everyone. People think this is going to be gloomy, but the conversation can be loving and funny. And, at the end of the day, you’re taking pressure off your loved ones, because they’ll know what matters to you.”
Comfort care sounds smart, so why did it take news about Barbara Bush for it to come to light?
It’s true that hospice care is more widely known, but Bishop believes that’s because palliative care is misunderstood—even among the medical community—and not standardized. “Palliative care currently has limited reimbursement, so the care team and the patient’s cost can vary,” she says.
Hospice care is a well-defined Medicare (or other insurance) benefit. The same can’t be said about palliative care. For example, a physician or therapy appointment might count as a clinical visit, meaning you’d only be charged a co-pay, but the services of a social worker or a chaplain might not be covered at all.
Bishop is keeping her eye on current legislative talks that aim to broaden the scope of palliative care services that will be covered by Medicare. Medicare Advantage plans will soon be able to include services like Meals on Wheels or transportation. (The soonest any new benefits would kick in would be 2019.) Until then, Bishop advises checking with your current plan to learn the types of comfort care services that are covered, and how to access them.
There are some ahead-of-the-curve coordinated palliative care clinics and community-based programs, and Bishop says it’s increasingly common for palliative care groups to share space with cancer centers. There are also a few pilot programs testing telehealth visits for those with advanced illnesses. But the most likely scenario, she says, is a patient working with their doctor to find a palliative care team.
“There is movement to make palliative care more accessible, but what will really move the needle is for patients to keep asking their doctors about it,” she says. “Consumer demand will drive up the accessibility and the reimbursements at the federal level.”