One of the strengths of palliative care is its recognition of the human side of illness. If you’ve been diagnosed with a serious disease or with a life-limiting illness, palliative care can make your life — and the lives of those who care for you — much easier. Palliative care may also be a good option if you have a serious disease that has prompted multiple hospitalizations or emergency room visits during the previous year.
If your family members also need help, palliative care can provide them with education about your situation and support them as caregivers. Talk with your doctor about your needs.
How do I ask for palliative care?
Asking for palliative care can feel overwhelming, especially if you’re unsure how to start the conversation or whether your provider is familiar with it. Here’s a simple script and set of questions to help guide your conversations.
Starting the Conversation:
- “Doctor, I’ve been thinking about my health and my goals for care. I’d like to focus on managing my symptoms and improving my quality of life, and I’m interested in exploring palliative care options. Can we talk about what that might look like for me?”
Key Questions to Ask:
- “What is palliative care, and is it an option for me?”
- If your provider isn’t familiar with palliative care, explain that it focuses on relieving symptoms and improving comfort alongside any other treatments.
- “Can you help me with symptom management?”
- This could include pain, breathlessness, nausea, fatigue, or emotional issues like anxiety or depression.
- “How can palliative care support me while I continue other treatments?”
- Clarify that palliative care can be provided alongside curative treatments and isn’t just for end-of-life care.
- “Can you refer me to a palliative care specialist or team?”
- Ask whether there’s a palliative care team available, either in the hospital or community, or if they can refer you to one.
- “How will palliative care help my family and caregivers?”
- Mention that you want support not only for yourself but for your family as well, especially in managing the emotional and practical challenges of care.
- “What can I expect from palliative care in terms of communication and decision-making?”
- Ask about having regular conversations about your care goals, advance directives, and the support you’ll receive in making difficult decisions.
For Patients with Limited Access to Specialists OR If Specialists Are Not Available:
- “Even if there’s no palliative care team here, can we focus on ways to manage my symptoms better and have ongoing conversations about my goals for care?”
This script can help open the door to discussing palliative care and guide the conversation toward ensuring your treatment aligns with your values and priorities.
What do I do if there are no specialty palliative care services available to me?
If specialty palliative care services are not available to you or your loved one, you can adopt a do-it-yourself approach by focusing on symptom management. This might mean using over-the-counter medications for pain or nausea and employing techniques like paced breathing for breathlessness.
Prioritize open communication with your primary care doctor and family to establish care goals, create advance directives based on your goals and wishes, and manage emotional and spiritual needs through mindfulness, support groups, or local clergy.
Build a care team using family, friends, and healthcare providers, and track symptoms to self-advocate for needed adjustments. Utilize community resources for assistance and focus on comfort and quality of life by creating a supportive environment, staying connected with loved ones, and seeking emergency care if severe symptoms arise.
How can I find a provider of palliative care?
For specific information in your area, consult your doctor or call your local hospital or hospice. Many hospices offer palliative care programs.
Use the interactive map from the National Alliance for Care at Home to find a provider in your area. Another resource is the GetPalliativeCare.org website, which also has a provider directory.
