The difference between palliative care and hospice
It doesn't mean you have mere months to live, NIH News in Health emphasizes.
Palliative care, which is focused on comfort care and symptom management, may be recommended at any stage of a chronic or serious illness. But it is often confused with hospice care, which is comfort care for patients in the final months of life and requires that all treatments be discontinued.
"Embracing palliative care does not mean that you're giving up on treatment," said Alexis Bakos, an aging expert at the National Institutes of Health. "Ideally, palliative care should be offered at the very beginning of a diagnosis of any serious illness."
Diagnoses like chronic heart and lung disease, cancer and neurodegenerative illnesses like dementia and Parkinson's all fall under the definition of "serious."
These illnesses lower a patient's quality of life or ability to perform everyday tasks like cooking or bathing.
A palliative care team can help patients cope with physical, psychological, emotional or spiritual suffering associated with these diagnoses, according to News in Health. They can not only help patients manage symptoms but also assist providers in coordinating complex care.
Dr. Matthew DeCamp, a physician at the University of Colorado, Anschutz Medical Campus, describes palliative care as a "holistic approach" to medicine and caregiving.
"It places the patient's quality of life and needs and values front and center," he told News in Health.
A pallative care provider typically meets with a patient soon after they are diagnosed with a serious disease to explain the many ways they can lend a hand - from help coordinating care to helping patients create an advance directive, which spells out their wishes for care if they become unable to speak for themselves.
"They will learn your preferences for care and communication," said Dr. Lori Wiener, a palliative care expert at the NIH.
Many patients welcome the assist, because planning for a serious illness is often complicated.
"Patients and families often remain unaware of how their serious illness may progress," DeCamp said. "They may not know how long they might be expected to live or how long or what types of symptoms they might have. Physicians, nurses and other members of the care team are also historically not very good at predicting the course of a disease."
These days, AI tools can help with that. But not all doctors use them and when they do, patients might misinterpret findings they spot in their medical records, said DeCamp, who is studying ethical issues surrounding use of AI.
Weiner's team, which is studying ways to help kids with cancer communicate their wishes to family and health care providers, has created a guide called "Voicing My CHOiCES" that helps teens and young adults consider and spell out their hopes, fears and values.
It has also developed an electronic screening tool called "Checking IN," which helps doctors understand what, specifically, distresses their young patients so they can be better prepared for visits.
Palliative care specialists can help patients understand their prognosis and their treatment options - and help them be comfortable.
So NIH experts urge patients who are diagnosed with serious illnesses to ask their doctor about palliative care if it isn't offered to them right away.
"Earlier NIH research was focused on making sure that primary care clinicians were aware of palliative care," Bakos said, adding that NIH is looking now at ways to involve more specialists such as E.R. doctors, neurologists and ICU providers into discussions of palliative care.
More information
Learn more about palliative care and hospice at the National Institute on Aging.
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