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. Meaningful care during 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 PD 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 withdraw of care. People continue to receive their PD medications. Families also receive practical and emotional support 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. Don’t wait until a crisis. 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.
Hospice criteria may include:
- 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 directive planning are a living will and a health care proxy form. Some states combine these documents into a single form. The hospice team can help with advanced care planning.