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What Caregivers Should Know About Palliative Care

A specialized approach to well-being during serious illness

A doctor providing palliative care to a man at home. Close up of them holding hands while the man lays down.

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En español | Palliative care is specialized medical care for people with serious illnesses that focuses on relief from symptoms and stress.

Palliative care is provided by a specially trained team, usually led by a doctor who works alongside a nurse, a social worker and other providers as necessary. 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 prognosis. It can be appropriate at any age and during any stage of a serious illness, whether the condition is curable, life-threatening or chronic. Palliative care can be provided alongside curative treatments like chemotherapy, radiation or surgery.

According to the Center to Advance Palliative Care, the illnesses most commonly treated with palliative care are heart disease, cancer, stroke, diabetes, kidney disease, Parkinson's disease and Alzheimer's disease.

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.

What's involved

Palliative treatment can be provided in a hospital, an outpatient clinic, a nursing home, an assisted living facility or at home. Palliative care teams take a holistic, or whole-person, approach to help improve a patient's quality of life in areas such as:

  • Pain and symptom management. This might include prescribing medication or using other methods to address pain and symptoms like shortness of breath, nausea, disorientation, fatigue and loss of appetite.

  • 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 (for example, 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, the organization says, but access can still be limited in some areas, including the south-central United States and rural regions.

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.

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:

  • What needs or services would you like to discuss?

  • What activities or experiences would you like to do or continue doing so that you 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 (medical insurance) 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 is administered by the states 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, irreversible liver disease, congestive heart failure or chronic obstructive pulmonary 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.

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