James Gordon, MD, FAAN, responds:
Depending on the neurologic condition, palliative care may be appropriate from the moment of diagnosis. It is designed to meet the medical, physical, psychological, emotional, social, and spiritual needs of patients with serious or life-limiting illnesses. Palliative care also supports family members and caregivers.
Unlike hospice care, which avoids treatment that prolongs life as an end in itself and is initiated when patients are considered to have less than six months to live, palliative care can start at any time and can complement life-prolonging treatment. It can be administered at home, at a provider's office, or at a hospital or rehabilitation center.
The size, components, and leadership structure of a palliative care team depend on the specific needs of patients and families and the resources available. Sometimes a specialty clinic includes a specialist palliative care consultant and sometimes it doesn't. The components of a palliative care team can and should be assembled even when specialty palliative care is not available. Prognosis may determine the urgency and nature of the care, but it does not determine the resources that might be required.
Members of the team may include a palliative care physician, other doctors, a mental health professional, a spiritual care provider (priest, chaplain, or rabbi, for example), nurses, a pain specialist, a social worker, nurse practitioners, and a physical therapist. The diverse range of experts ensures that patients and their families receive counseling, emotional and spiritual support, and help with daily activities as well as medical care.
Palliative care providers can help prepare patients and family members for each stage of the disease. For patients with dementia, they can teach family members how to relieve anxiety in patients, how to keep them safe, and how to access respite care. For patients with severe nerve pain, palliative care can include physical therapy, medication, and counseling.
Another important component is advance care planning. Patients and families are encouraged to discuss their values and goals of care. Advance directives, power of attorney, and physician's orders for life-sustaining treatment (also known as POLST) should then be guided by that discussion.
Patients with particularly difficult symptoms or challenging family dynamics may benefit from subspecialty palliative care. For this, the primary neurologist or other physician might be able to refer the patient to specialized palliative care service. The patient's local medical center may also be able to offer advice about specialized palliative care services, usually under the heading "Palliative care" on the center's website or through its social work department.
Insurance covers the cost of all components of palliative care. There are co-pays and limits on services, depending on insurance plans. For instance, if physical therapy is recommended, the insurance carrier may limit the number of covered appointments per year.
Dr. Gordon specializes in neurology and palliative care at the University of Washington Medical Center in Seattle.