In the last months of my mother’s life, before she went into hospice, she was seen at home by a nurse practitioner who specialized in palliative care. The focus is on improving patients’ quality of life and reducing pain rather than on treating disease. Mom had end-stage Alzheimer’s disease and could no longer communicate. It was a relief to have someone on hand who knew how to read her behavior (she ground her teeth, for instance, a possible sign of pain) for clues as to what she might be experiencing.
I was happy to have the help but wished it had been available earlier. I’m not alone in that. Evidence of the benefits of palliative care continues to grow. For people with advanced illnesses, it helps to control physical symptoms such as pain and shortness of breath. It addresses mental health issues, including depression and anxiety. And it can reduce unnecessary trips to the hospital. But barriers to access persist—especially a lack of providers. As a result, palliative care is too often offered late, when “the opportunity to benefit is limited,” says physician Kate Courtright of the Perelman School of Medicine at the University of Pennsylvania.
In 2021 only an estimated one in 10 people worldwide who needed palliative care received it, according to the World Health Organization. In the U.S., the numbers are better—the great majority of large hospitals include palliative care units—but it’s still hard for people who depend on small local hospitals or live in rural areas. Outpatient palliative care is especially hard to find.
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Experts are also working to correct misconceptions. “When people hear the words ‘palliative care,’ they think ‘end-of-life care—I’m going to die,’ ” says physician Helen Senderovich, a palliative care expert at the University of Toronto. Although palliative medicine grew out of the hospice movement, it has evolved into a multidisciplinary specialty encompassing physical, psychological and spiritual needs of patients and their families throughout the trajectory of disease, Senderovich says. That path includes the time when treatments are still being tried.
So palliative care specialists have begun referring broadly to “supportive care”— “anything that is not directly modifying the disease,” says medical oncologist and palliative care specialist David Hui of the MD Anderson Cancer Center. For example, wound care and infusions to improve red blood cell counts in cancer patients are supportive; chemotherapy is not.
Generally, the earlier that supportive care is offered, the more satisfied patients report feeling. And ideally, people who need it now get referred to palliative medicine around the time they are diagnosed with a serious illness. An influential study in 2010 found that patients with lung cancer who received palliative care within eight weeks of diagnosis showed significant improvements in both quality of life and mood compared with patients who got only standard cancer care. Even though those receiving early palliative care had less aggressive care at the end of life, they lived an average of almost three months longer.
More recent studies have confirmed the life-quality advantages of earlier palliative care, although not all studies have shown longer survival. “Patients don’t just start having pain and anxiety and weight loss and tiredness only in the last days of life,” Hui says. Starting palliative care earlier allows patients and the care team to “think ahead and plan a little bit,” he adds.
Nor is palliative care effective only for cancer, although that’s where much of the research has been done. It benefits those with heart failure, chronic kidney disease, dementia, chronic obstructive pulmonary disease (COPD), Parkinson’s, and other serious illnesses.
In January 2024 the Journal of the American Medical Association published a pair of studies that broke “new ground” in developing sustainable, scalable palliative care programs, according to an accompanying editorial. One, the largest-ever randomized trial of palliative care, included more than 24,000 people with COPD, kidney failure and dementia across 11 hospitals in eight states. The researchers made palliative care an automated order, where doctors had to opt out of such care for their patients instead of going through an extra step of opting in. The rate of referrals to palliative care increased from 16.6 to 43.9 percent, says Courtright, lead author of the study. Length of hospital stay did not decline overall, but it did drop by 9.6 percent among those who received palliative care only because of the automated order.
The second study looked at 306 patients with advanced COPD, heart failure or interstitial lung disease. Half these people participated in palliative care via telehealth visits with a nurse to handle symptom management and a social worker to address psychosocial needs; the other people in the study did not get such care. Those who received the calls quickly showed improved quality of life, and the positive effects persisted for months after the calls concluded.
Because there are not enough palliative care providers, Hui advocates for a system that directs them to patients who would benefit most. Usually, and not surprisingly, those are people with the most severe symptoms. This system uses early screening of symptoms to identify these people. Hui calls the approach “timely” palliative care. “In reality, not every patient needs palliative care up front,” Hui says, so timely care uses scarce resources as effectively as possible.
I don’t know exactly when my mother needed to start palliative care, but I hope that going forward more caregivers and more families know to ask about it sooner.
This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.