Palliative Care and Hospice: 5 Tips for Advocating for Yourself and Your Loved One

If you or a loved one has Parkinson’s disease (PD), it is important to understand what support is available to you. Most people are aware of hospice as a resource for late-stage Parkinson’s and palliative care as an option for additional support even at the point of diagnosis. The tips below will inform you about palliative care and hospice and help you advocate for yourself or your loved one when you consider these resources.

Tip #1: Palliative care is different from hospice care.

Many people believe the terms palliative care and hospice are interchangeable. Although they share some things in common, they are in fact different types of care.

Palliative care, ordered by one’s doctor and covered at least in part by most insurance plans, can be started as early as the time of diagnosis as an additional layer of support, complementing any other medical care you currently receive or want to pursue. The multi-disciplinary palliative care team will support you and your family by tending to unmet physical needs you may have that are hindering your quality of life and comfort, as well as your emotional, social and spiritual needs and those of your family members and caregivers.

Hospice care shares many goals of palliative care in that patient and family autonomy, dignity and comfort are paramount. However, hospice is reserved for people in later stages of Parkinson’s or advanced illness. Learn more about the role of hospice here.

hospice

Tip #2: You may be the Parkinson’s expert on the team.

Health professionals working in palliative care and hospice may have differing levels of familiarity with Parkinson’s disease, so at various points in your partnership with them, you may need to advocate for yourself or your loved one. Don’t hesitate to ask your loved one’s neurologist to give direction or guidance to the palliative or hospice care team, especially if there is a conflict about Parkinson’s medications or symptoms.

Utilize your Aware in Care hospital kit to help distinguish between medications that are considered safe and unsafe and to educate members of your care team that may be less informed about the motor and non-motor symptoms of PD.

In March 2020 the University of Rochester, a Parkinson’s Foundation Center of Excellence, received a grant to create a new program in partnership with the Parkinson’s Foundation that will launch customized palliative care training across 33 U.S. Centers of Excellence. This program will train more healthcare professionals about palliative care, underpinned by the goal of getting palliative care to as many people with Parkinson’s as possible. Read the full article.

Even if you are partnering with a palliative or hospice care team that understands Parkinson’s very well, remember that you are the expert in your experience with Parkinson’s.

Tip #3: Searching for a “best fit” team is worth the effort.

As with all health care services, there is wide variety in both philosophy of care and quality of care among providers. Ideally, you will find a team that is flexible and curious with their approach to your Parkinson’s symptoms and medication needs.

Get recommendations from people in your PD community ― ask members of your local support group or exercise class who may have experience on the subject. Browse different providers serving your area to gage whether they offer any additional, innovative services as part of their palliative care or hospice program. Talk or meet with a few palliative and hospice care agencies to learn more about their values and desire to support your unique PD needs.

Tip #4: Make the most of the services available to you.

Learn about all services a palliative or hospice care agency offers and ask to be connected to any that may interest you; you do not need to wait for the agency to suggest it first. If you do not understand the role of one of the members of the care team, ask for more information or better yet, a consultation with that person.

Tip #5: It can take courage to ask your doctor about palliative care or hospice.

Most of us feel uncomfortable talking about anything that hints at our mortality, which is why so many people, even those in the healthcare field, hesitate to approach these topics. Palliative and hospice care can both support your quality of life goals ― with palliative care supporting quality of life at any stage and hospice care supporting quality of life at the advanced Parkinson’s stages. Asking questions does not commit you to anything, it only allows you to be more informed about your options.

For more information about palliative, hospice or expert Parkinson’s care, call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).

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