If you or a loved one has a potentially life-limiting neurologic condition such as brain cancer, stroke, amyotrophic lateral sclerosis (ALS), Parkinson's disease, or Alzheimer's disease, your neurologist may bring up palliative or hospice care at some point.

"Palliative care is appropriate for anyone with such a disorder," says James M. Gordon, MD, FAAN, clinical associate professor of neurology at the University of Washington in Seattle. "Every neurologist should understand and apply the principles of palliative care," he says. "Hospice is palliative care in the last months of life."

Purpose

Palliative care: To reduce suffering and improve quality of life for patients and their families.
"Palliative care focuses on goals of care and enhancing quality of life," says Claire Creutzfeldt, MD, assistant professor of neurology at the University of Washington and attending neurologist at Harborview Medical Center in Seattle. Palliative care includes relieving pain and other physical symptoms, addressing sleep problems, offering counseling and medication for anxiety and depression, and providing chaplain services, if needed, for spiritual support. Speech, physical, and occupational therapies may be initiated to help with communication, swallowing, and motor skills.

Hospice care: To keep terminally ill patients comfortable and provide support for their families and caregivers.
As with palliative care, patients receive medical care to relieve symptoms. Hospice also provides counseling and social support to help patients and families come to terms with emotional, psychological, and spiritual concerns at the end of life. Unlike palliative care, hospice organizations may provide respite care, allowing patients receiving home care to be hospitalized briefly so that family caregivers can take a break. Hospice also continues to provide bereavement care for families after the patient has died.

Eligibility

Palliative care: Anyone who has a condition that may limit his or her life.
"Palliative care allows patients to have serious discussions about their prognosis and care and start thinking about their future, including how they define quality of life and what they're willing to give up in order to live longer," says Dr. Gordon. "Conversations ought to begin soon after diagnosis, even when patients are still expected to live a long time."

Hospice care: Patients whose prognosis is six months or less who are no longer pursuing curative care.
This includes patients who may no longer benefit from curative or life-prolonging treatment and those who don't want to continue such treatment.

Providers

Palliative care: Doctors, including neurologists; nurses; nurse practitioners; physician assistants; pharmacists; social workers; chaplains; occupational, speech, and physical therapists; home health aides and services; psychologists; and other providers as needed.
Many experts distinguish between general and specialist palliative care. General palliative care is provided by the patient's main doctor and includes managing symptoms, psychological and emotional support, discussing goals of care and advance directives, and other therapeutic services.

Specialist palliative care manages more complex problems, such as complicated symptoms and coping difficulties. This is typically provided by various doctors, who lead a team with palliative care specialists.

Hospice care: The same team, with the addition of bereavement counselors.

Location

Palliative care: Many patients are referred to palliative care after they've been hospitalized; others are referred after a life-changing diagnosis.
Primary palliative care can be provided, ideally, by your usual doctor. You can also receive specialist palliative care at an outpatient center, a nursing home, an assisted living facility, or at home, but that's harder to find, says Dr. Gordon.

Hospice care: Usually provided at home or in a residential facility. There are also some residential hospices, as well as hospital beds designated for hospice patients.
"Many patients want and are able to do hospice at home, but with neurologic diseases, that's not always possible," says Farrah N. Daly, MD, a neurologist in Falls Church, VA, affiliated with Reston Hospital Center. "Those patients may have more intense needs for longer periods before they die, so it's not always practical to continue living at home."

Coverage

Palliative care: Services are covered by insurance in the same way as other care.

Hospice care: Medicare, Medicaid, or private insurance may have a hospice benefit.

Medicare and Medicaid have no limit on the number of days spent in hospice, says Dr. Daly. But those who have private insurance should check their plans carefully. "Some insurers have a defined limit, with only a certain number of days available," she says. Once patients have entered hospice, Medicare and many private insurance plans will no longer cover medication or other treatment related to the terminal disease for which the patient was admitted to hospice. Nor will hospice pay for care from any hospice provider that wasn't set up by the hospice medical team. Medicare also doesn't cover room and board at a nursing home or other residential facility, even though it does cover all other hospice services, such as medical care and treatment and therapies related to the hospice diagnosis, while a person lives in such a facility. If the hospice decides that a patient needs short-term inpatient or respite care, however, Medicare will cover it.

Duration

Palliative care: As long as ongoing treatment is helping.
Patients can continue with palliative care indefinitely, says Dr. Gordon. If ongoing treatment no longer helps and they are deemed terminally ill and likely to die within six months, they can transition to hospice care.

Hospice care:Services are provided for the patient until death.
For loved ones, bereavement care continues for a year or more after the patient has died. For patients who live longer than six months, Medicare and some private insurance providers will usually continue to pay for hospice if the patient's doctor certifies that the patient is still terminally ill.

Web Extra

For tips on what to ask about hospice care, read 5 Questions to Ask About Hospice.