If advancing PD symptoms cause continued decline and medical complications, hospice support may be added to continue care at home. Hospice is a philosophy of comprehensive care for people with a life-limiting illness. Hospice care is typically offered to anyone with a life expectancy of months rather than years, and can provide a wealth of services and support to a person with Parkinson’s disease and their family caregivers. Comfort care is emphasized over aggressive treatment, with an emphasis on quality rather than quantity of life.
Start the Conversation
After discussion with the person with Parkinson’s and family, a physician may decide to initiate a hospice referral. However, you may need to initiate the hospice discussion yourself and not wait for the physician to do so.
Make the Plan
Hospice care is a benefit of most insurance plans, including Medicare, and all care services provided by the hospice team are covered under this benefit. After receiving a referral from the physician of the person with Parkinson’s, someone from the hospice team will meet with the patient and family to make plans for care. These plans include support for physical, emotional, and spiritual needs based on your particular situation. Options for caregiver support, including respite care, are typically provided. Professional medical care continues throughout the hospice process. Many families find hospice support invaluable during this difficult time.
Many caregivers are concerned that their loved one will not be able to receive their PD medications if they elect for hospice care. This is incorrect. Hospice is not a withdrawing of care. Rather, hospice is about holistic comfort care and symptom management (instead of curative medical interventions). The person with Parkinson’s should continue to get his or her prescriptions for PD medications from the provider who has been treating him or her all along. Continuing to take PD medications will help reduce muscle rigidity and maximize comfort. If the hospice professionals have questions about Parkinson’s disease, you can refer them to this website or to the Parkinson’s Foundation Helpline (1-800-473-4636) as needed.
The Difference Between Hospice and Palliative Care
While the goal of hospice is to provide quality, compassionate care for people facing life-limiting illness, palliative care services can be accessed at any time to help relieve pain and suffering.