What to know about palliative and hospice care

Despite what many people think, palliative care is distinct from hospice care - it's not just for end-of-life. Misinformation and lack of education persist among those needing these services, and even among some health care providers.

Also known as comfort care, palliative care can be an effective approach when provided in conjunction with curative care and treatments for people facing serious illnesses such as cancer, chronic obstructive pulmonary disease or heart disease.

Palliative care can reduce costs for health systems and hospitals, especially when initiated early. It is fundamental to health and human dignity and is a basic human right, according to the FXB Center for Health and Human Rights at Harvard.

When reporting on serious illnesses, journalists can help demystify palliative care and encourage more people in need to take advantage of it by clearly explaining the differences, and benefits, and incorporating anecdotes to further illustrate how these types of care make a difference in the lives of patients and their families.

What is palliative care?

Palliative care can involve a dedicated, interdisciplinary team of physicians, nurses, social workers, therapists, religious or spiritual advisors, pharmacists, and nutritionists collaborating with other health providers to develop a personalized plan of care, ensuring all of the person's needs - not only physical needs - are met, according to the National Institute on Aging. These might include alleviating or managing:

• Pain.
• Shortness of breath.
• Fatigue.
• Constipation.
• Nausea.
• Loss of appetite.
• Sleep problems.
• Medication or treatment side effects.

The team coordinates care, and emotional and social support for the person and family members. It's commonly believed that palliative care requires someone to give up their current physician or medical team. That's false. Palliative care can be given at any stage of illness. In addition to improving quality of life and helping with symptom management, it can also help patients understand their medical options. Palliative care can also be provided while patients continue to receive curative or life-prolonging treatment.

Examples of palliative care include:

• Anti-nausea medication for chemotherapy patients.
• Pain medication.
• Therapy to help cope with depression.

Many people automatically think "end-of-life" when palliative care is suggested as an adjunct to treatment, but it's not always the case. Patients receiving palliative care may continue to live for many years.

What is hospice care?

Hospice is a form of palliative care specific to people in the final weeks or months of life. A major difference in hospice care is that any curative care is stopped. In hospice care, treatment is limited to medications that alleviate a patient's physical symptoms along with emotional, spiritual, social and mental support.

The hospice team can provide services 24/7; someone is always available by phone for advice or questions. According to Harvard Health, hospice services generally include:

• Regular visits to an individual and family by hospice team members, including a nurse and a social worker.
• Pain medication and symptom management.
• Medical equipment like a hospital bed, wheelchair or shower chair.
• Necessary supplies like oxygen, bandages and catheters.
• Physical, occupational and speech therapy depending on symptoms and disease progression.
• Short-term respite care for family caregivers.
• Grief counseling and bereavement support for the patient and family.

Hospice care supports families, but it's usually a family member who provides day-to-day caregiving. Home health aides can help ease the burden, although most insurance companies cap the number of hours per day or per week and any difference must be made up through personal funds or long-term care insurance.

The history of hospice care

In 1975, Florence Wald, a former dean of Yale School of Nursing, started the hospice movement in the U.S. after she had studied with hospice pioneering physician Cicely Saunders in London.

"Hospice care focuses on quality rather than length of life. It provides humane and compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible," Saunders said. It does not prolong or shorten life but allows nature to take its course while providing physical and emotional comfort to the patient and their family.

When Jimmy Carter died in December 2024 at age 100, he had been receiving hospice care for about 16 months after deciding to discontinue aggressive treatment for metastatic melanoma. Hospice services are typically offered in the final months of life, but President Carter proved unusually resilient despite stopping any curative measures.

Lack of comfort care globally

The global need for palliative care will continue to grow as a result of aging populations and the rising burden of disease, according to a 2020 World Health Organization report. But at the time of that report, only about 14% of people needing palliative care worldwide received it due to:

• Shortages of many pain-relieving drugs.
• Restrictive regulations for morphine and other essential controlled palliative medicines.
• Lack of appropriate policies.
• Lack of trained professionals.

Who pays?

Most private insurance plans at least partially cover palliative care services. Medicare and Medicaid also typically cover most of these services. Veterans may also be eligible for palliative care through the Department of Veterans Affairs, according to the National Institute on Aging.

Medicare covers hospice care for all adults 65 and older as long as they meet certain criteria, even if they had previously enrolled in a Medicare Advantage program. Medicare hospice spending is increasing, totaling $25.8 billion in 2023 and is projected to more than double by 2033, according to Statista.

The Department of Veterans Affairs has its own rules regarding payment; these are subject to change in the current administration.Journalists should be aware that reports of pain-alleviating drug shortages and the ongoing direct care workforce shortage may impact palliative care and hospice services in certain areas.

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