How to Add Palliative Care to Your Parkinson's Plan

Palliative care is extra support for anyone living with a serious illness, such as Parkinson’s. It helps manage symptoms and supports emotional well-being. The goal is to improve quality of life for you and your care partners.

Palliative care can help you:

• Manage difficult symptoms such as pain, anxiety and constipation

• Cope with the stress and emotional impact of illness

• Support your care partner with education and counseling

• Plan for future care and make decisions as your needs change

How does palliative care work?

Palliative care can be part of your regular care. In some settings, it involves a specialized team that may include nurses, social workers, chaplains and other health professionals. It often starts with a conversation about what matters most to you, followed by a plan to address those needs. It does not replace your current treatment.

When should I get palliative care?

Palliative care can be helpful at any stage of Parkinson’s, even soon after diagnosis. You might consider palliative care if symptoms are hard to manage, daily life feels overwhelming or you want help planning ahead. It is not limited to hospice or end-of-life care.

How can I get palliative care?

• Ask about palliative care at your next medical visit. If you are in the hospital, in rehabilitation or receiving home health services, ask if palliative care is available.

• Visit www.getpalliativecare.org to find services near you. Many palliative care agencies offer support at any stage of illness.

Will my insurance cover palliative care?

Medicare typically covers many palliative care services. Coverage through Medicaid and private insurance depends on your state and your plan. Check with your insurance company.

What if there are no palliative care services where I live?

Palliative care services are growing, but they may not be available in every area. You and your care team can still work together to focus on your comfort, emotional support and quality of life.

If you don't have palliative care services near you, here are four ways to advocate for more supportive PD care:

1. Manage symptoms

• Prepare for Parkinson's appointments. Before each visit, identify the three things that matter most to you to discuss with your care team.

• Ask for referrals to specialists. If certain symptoms are hard to manage, ask for a referral to a specialist with expertise in that area.

2. Support care partners

• Work as a team. Share emotional and physical challenges. Learn about Parkinson’s and caregiving together. Talk with your care team and support network about help you may need now and in the future.

3. Care for emotional or spiritual health

• Reach out to others. Talk with a support group, counselor, spiritual advisor or trusted friend. These relationships can provide a safe space to share and help you cope with Parkinson’s.

4. Plan for future care

• Think ahead. Reach out to others. Talk with a support group, counselor, spiritual advisor or trusted friend. These relationships can provide a safe space to share and help you cope with Parkinson’s.

• Document your choices. Complete advanced care directives, such as a healthcare proxy or living will to make your wishes known if you cannot speak for yourself.