What Caregivers Should Know About Palliative Care
This specialized approach to well-being helps lessen patients’ suffering during a serious illness
Palliative care is specialized medical care for people who have serious illnesses. It focuses on relief from symptoms and stress.
A specially trained team — usually led by a doctor who works alongside a nurse, a social worker and other providers as necessary — provides this care, which does not deal with the cause of a condition. This unit collaborates with a patient’s main medical team to provide extra support during any stage of a serious illness.
The goal of palliative care is to improve quality of life for both the person coping with an illness and the family, including caregivers.
"Palliative care can help caregivers fill in the gaps,” says Andrew Esch, a palliative care physician and a consultant for the nonprofit Center to Advance Palliative Care. “We help with things like pain and symptom management, communicating with patients and coordinating their care with all of their other doctors.”
Benefits of palliative care
Palliative care is based on need, not a prognosis. It can be appropriate at any age and during any stage of a serious illness, whether the condition is chronic, curable or life threatening. Palliative care can be provided alongside curative treatments such as chemotherapy, radiation or surgery.
The illnesses most commonly treated with palliative care are these, according to the New York-based Center to Advance Palliative Care:
Research shows that palliative care improves pain and symptoms, increases family satisfaction with the care loved ones receive and reduces health care costs. It has even been shown to help some patients live longer.
More than 50 million people worldwide need palliative care every year, but only about 12 percent of those who could use it actually receive it, according to the World Health Organization. The result is unnecessary suffering for patients and their families.
Palliative treatment can be provided in a hospital, an outpatient clinic, an assisted living community, a nursing home or at home. Palliative care teams take a holistic, or whole-person, approach to help improve a patient’s quality of life in many areas.
Pain and symptom management. This might include prescribing medication or using other methods to address pain and symptoms like disorientation, fatigue, loss of appetite, nausea and shortness of breath.
Emotional, psychological and spiritual well-being. “Not all suffering is physical,” Esch says. Palliative care can help address a person’s mental health in addition to physical symptoms. One-on-one counseling, referrals to a psychologist or other provider, and meetings with a religious or spiritual adviser may be part of palliative treatment.
Practical and logistical support. The palliative regimen might include coordination of transportation services, meal delivery or other individualized support, ranging from financial counseling to finding someone to watch your loved one’s pets during medical appointments.
How to get palliative care
People can start the process by asking their primary care doctor or the physician overseeing their treatment, perhaps an oncologist or neurologist, for a referral to a palliative care specialist.
Online research can also help. The Center to Advance Palliative Care offers a comprehensive, searchable directory of providers. Most hospitals offer palliative care services, but access can still be limited in some areas, including the south-central United States and rural regions, the organization says.
Don’t forget to check in with your loved one about their desires and concerns. AARP’s Prepare to Care: A Planning Guide for Families is a step-by-step guide for creating a caregiving plan, including a checklist of your loved one’s goals and needs. It is available in six versions, including three languages.
Being prepared can also help you and your loved one as you begin working with a palliative care team. According to the American Academy of Hospice and Palliative Medicine, an initial consultation might include questions like these:
- What needs or services would you like to discuss?
- What activities or experiences do you want to do or continue to feel you are living well?
- What are your fears or worries about your medical care?
Paying for palliative care
Palliative care is billed like any other medical specialty. Many private insurance companies will cover all or part of palliative care. For more details, contact your insurance representative. Be sure to ask what copays or deductibles may apply.
Medicare may cover palliative care, but with some conditions.
Medicare Part A, which covers hospitalization, pays for palliative care only when it is considered hospice care, a related approach to symptom management for people who are terminally ill (see sidebar). You must have a life expectancy of six months or less and have chosen palliative care over seeking a cure.
Also, Medicare will pay only if you use an approved provider; you can use Medicare’s online Hospice Compare tool to find one near you. If you have Medicare Advantage, ask your plan provider to help you find a provider.
Medicare Part B, which covers doctors’ services and medical tests, can pay for services that fall under standard Part B fee-for-service benefits, such as doctor visits associated with palliative care, whether hospice-related or not.
Medicaid coverage varies by state. The government health program for low-income people, which states administer according to federal guidelines, pays for palliative care, such as doctor visits and medication, that falls within standard benefits. But some states go further — notably California, which requires the managed-care plans that cover most of its Medicaid recipients to offer full coverage for palliative care for people with advanced cancer, chronic obstructive pulmonary disease, congestive heart failure or irreversible liver disease.
Palliative vs. hospice care: What’s the difference?
The terms palliative care and hospice care are sometimes used interchangeably, even by medical professionals, but they are not the same.
Palliative care is the attention to and treatment of symptoms of a serious disease, regardless of prognosis. It aims to provide comfort and reduce pain.
Palliative care can begin as soon as someone is diagnosed and can coincide with treatment aimed at curing or remediating an illness, such as chemotherapy or surgery. People receiving palliative care can go on to recover.
Hospice care is also focused on providing comfort, but it is undertaken for people at the end of their lives who will not recover from their illness. People in hospice care are no longer seeking a cure or undergoing curative treatment. Hospice care starts after treatment of a person’s disease is stopped and is typically offered when a person is expected to live six months or less.
This story, originally published Dec. 4, 2019, was updated with additional reference information.