Joe Rotella, MD, MBA, chief medical officer of the American Academy of Hospice and Palliative Medicine (AAHPM).
If you have a serious health condition, anything from cancer to congestive heart failure to dementia to Parkinson’s disease, you probably already spend a lot of time with doctors and other health-care providers. But you may not have a care team focused on what may matter most to you: living your best life while you manage that condition. That will mean different things to different people, but often includes managing not only physical symptoms, but the psychological stress, practical issues, and even the spiritual challenges that come with any serious illness. That’s where palliative care comes in. Here are six things you might not know about palliative care:
1. Palliative care is for people at any stage of illness. You can sign up for palliative care immediately after a serious diagnosis or any time after that. The condition can be curable, chronic, or life-threatening. That’s one way in which palliative care differs from hospice care, which is reserved for people expected to live six months or less. Palliative care is meant for anyone dealing with considerable discomfort, disability, or distress as a result of their health condition. Palliative care specialists are skilled in treating pain, nausea, poor appetite, shortness of breath, fatigue, constipation, poor sleep, anxiety, depression, and other common problems. But patients and their caregivers can call on palliative care providers for other kinds of support as well. That includes help coordinating your care, dealing with paperwork, planning for long-term care, or figuring out how to pay for care.
2. You don’t have to give up any other treatment to get palliative care. You can get palliative care while continuing care aimed at treating or even curing your underlying condition. That includes, for example, the chemotherapy and radiation that you hope will cure your cancer or the dialysis that you need for your chronic kidney disease. Palliative care should give you new options, not take any away. Research shows that patients receiving timely palliative care along with standard treatments often live longer than those not getting that kind of support.
3. Palliative care is a team endeavor. Some doctors are palliative care specialists, but if you start palliative care, don’t expect to see just one doctor. Your team may include your existing primary and specialist providers, along with palliative care specialists who may include doctors, nurses, social workers, psychologists, pharmacists and, for those who desire them, spiritual advisors. These teams may work out of a specialized clinic within a hospital or health-care system or at other locations. They may or may not be affiliated with a hospice organization. Some will see patients and their caregivers in their homes or through video visits; others stick to in-office care.
In any case, patients and their caregivers are considered very much a part of the team. In fact, the patient is the captain. A key goal of palliative care is to get the whole team on the same page about what the patient wants and cares about most and how to achieve that.
When you start palliative care, you should expect the professionals on the team to conduct a comprehensive assessment of your needs—and to really listen to what you have to say about what would make your life better.
4. You can ask for palliative care. If you think you might benefit from palliative care, you don’t have to wait for a health provider to offer it to you. You can ask for it. You might find that’s all you need to get a referral to a palliative care team. Or you might find that your doctor doesn’t know much about palliative care or doesn’t agree that you would benefit. In that case, you might need to dig a little deeper. You could start by getting a second opinion from another doctor. You might also want to contact your insurance provider. In many cases, insurers offer case management services that might help you get access to palliative care. If you aren’t sure about what services are available near you, look for palliative care organizations in your state that have that information. You also can check out provider directories offered by the National Hospice and Palliative Care Organization and the Center to Advance Palliative Care.
5. Palliative care is widely—but not universally—available. Palliative care is much more widely available than it was a couple of decades ago. A recent survey found that 72 percent of U.S. hospitals with 50 or more beds had a palliative care team in 2019, up from 7 percent in 2001. But the national picture hides huge geographic differences, with hospitals in the Southeast, for example, much less likely to offer palliative care than those in the Northeast. In general, big urban hospitals are most likely to offer palliative care and small rural hospitals are the least likely to.
Meanwhile, a growing number of hospice agencies have developed separate palliative care programs to serve people with serious illness not getting hospice care. More than two-thirds of hospice providers who responded to one recent survey reported offering separate palliative care services.
6. Insurers vary in what they pay for palliative care. This is another way in which palliative care differs from hospice care, which is covered as a comprehensive benefit by Medicare, Veterans Affairs and some other insurers, including some state Medicaid systems. That means patients pay nothing for any of the care they get under the hospice umbrella. When it comes to palliative care, Medicare, Medicaid and many other insurers often will cover the medical portions—such as your visits with doctors and nurses and your medications, with any of your usual co-pays—but insurers may or may not cover additional services, such as meetings with chaplains and social workers.