If you’re a family member considering hospice for someone with end-stage Parkinson’s disease, we know you’ve had emotional and medical challenges over the years. Family caregiving in the end stages of the disease requires crisis management, self-care and decisions about caregiving at home or a nursing facility.
Whether someone with advanced Parkinson’s disease lives at home or in nursing home, hospice care is an extra layer of support with a focus on comfort and quality of life. Hospice is not the withdrawal of care. Instead, hospice is a redirection of care, with the goals of providing additional support to the patient and family while also focusing on symptom management.
People continue to receive medical support, Parkinson’s medications, and management by their primary care provider. Families also receive practical, emotional and spiritual care from the hospice team.
Understanding the goals and values of patients and their families is the first step in responsive care. The hospice team coordinates care with family members, doctors and facilities to ensure everyone is working together. Support includes:
- Reducing the risk of infections that may lead to emergency care
- Managing pain
- Relieving anxiety and agitation
- Respite care for family caregivers
- Strategies to reduce problems in swallowing
- Help with incontinence issues
- Managing sleep problems
- Support for PD-related dementia
- Caregiver training and education
- Emotional and spiritual support for patients and families
People with PD experience the five Hoehn and Yahr stages of Parkinson’s disease in their own unique order and timeline. This slow and unpredictable path may delay end-of-life care discussions. Early conversations enable family members and doctors to understand a patient’s wishes and plan for the best quality of life—all the way to the end.
"As a child, my first experience with hospice was seeing the care hospice provided to my grandfather with Parkinson’s Disease," said Karli Urban, M.D., a hospice medical director in Columbia, Missouri.
"The ability to follow his wishes and goals of keeping comfortable at home, surrounded by his loved ones, was only feasible because of the services provided through hospice. In addition, the caregiver support provided to my grandmother proved valuable as she navigated changes during his life and after his passing. We learned early involvement of the hospice team helped my grandfather, and our family, as we navigated these important changes in our lives."
- Critically impaired breathing, including the need for supplemental oxygen at rest
- Progression to a wheelchair or being bed bound
- Unintelligible speech
- Inability to independently perform the activities of daily living
- Inability to eat or drink sufficiently, leading to continuing weight loss
- Complications including aspiration pneumonia, sepsis or stage 3 or 4 pressure ulcers.
- Medicare (CMS) guidelines require a doctor to certify that a person has six months or less to live to be eligible for hospice benefits.
Medicare and many insurance plans cover the cost of hospice care. Medications, home medical equipment, and supplies related to a person’s terminal illness are provided at no cost. Care is available at home, in a nursing facility or anywhere a person calls home.
Advanced care planning enables people in the early stages of PD to express the kinds of care they want. Questions about feeding tubes or resuscitation can be addressed before a medical crisis. Important documents for advance direct care planning include a living will and a health care proxy form.
The hospice team can help review these documents with the patient and family and help answer questions as you navigate these documents, making sure the goals of care are clear and in line with the patient’s wishes.
Important documents for advance direct care planning include a living will and a health care proxy form. The hospice team can help review these documents with the patient and family and help answer questions as you navigate these documents, making sure the goals of care are clear and in line with the patient’s wishes.
Reviewed by Karli Urban, M.D., March, 2022