Palliative care is often misunderstood. People may associate it with end-of-life care or “giving up” – especially when facing a serious health challenge like cancer. But palliative care may not be what you think, and you shouldn’t be afraid to ask for it. Here’s a closer look at what palliative care is – and isn’t.
Palliative care doesn’t automatically mean end-of-life. The word palliative means “relieving pain” or “alleviating a problem,” and that’s exactly what this type of care is intended to do: be an extra layer of support that helps reduce the symptoms, anxiety, and stress often associated with a serious illness. A palliative care specialist addresses symptoms such as nausea, loss of appetite, fatigue, or weight loss.
“Although many people think all we do is take care of the dying, in fact we help patients with many different outlooks and diagnoses, at varying stages of illness,” says Janet Abrahm, MD, chief of adult palliative care at Dana-Farber/Brigham and Women’s Cancer Center.
It puts you in control. Palliative care is helpful throughout your cancer experience. Early on, it can help make treatments easier to tolerate. At later stages, it can reduce suffering, help you carry on with daily life, and assist in planning for future medical care.
“Patients and families may assume that cancer comes with pain and suffering,” says Abrahm. “And some patients are afraid they won’t know whether the cancer is getting better if they take medications to reduce pain. We have other measures to monitor whether the cancer is getting better, so please let’s treat the pain.”
It offers benefits at any age. While palliative care is often associated with adult care, children can also benefit from it. For example, the Pediatric Advanced Care Team at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center helps ease pain in young patients.
It can spark important conversations. Palliative care involves helping patients and their loved ones discuss their priorities and wishes. This may be as simple as making sure the family has had a conversation about naming a health care proxy, or weighing the benefits and burdens of a treatment. But it can also involve discussions about a patient’s desires in extreme medical situations – such as needing a ventilator to stay alive.
“Opening this dialogue can help patients become more empowered in their care decisions,” Abrahm says. “And just talking about these difficult topics can be incredibly freeing for family members.”
So what’s the best time to ask your health care team about palliative care? Abrahm says it’s OK to ask about it right from the start – any time you face a diagnosis of a serious or life-limiting illness.