The first step is to talk to your healthcare provider. You may have to ask for a palliative care referral to get palliative care services. Whether you are in the hospital or at home, a palliative care team can help you. The following tips will help you talk to your healthcare team:
- Share what you think about palliative care and ask where palliative care is available in your area.
- Ask for an explanation of your illness and any past, current and future treatments and procedures.
- Explain exactly what quality of life means to you. This list may include: being able to spend time with loved ones; relief from any pain and other symptoms; having the ability to make your own decisions for care and where you want to be treated (home vs. in the hospital).
- Be sure your team of clinicians is aware of any personal, religious or cultural beliefs, values or practices that are important to consider in your care and treatment decisions.
- Discuss which treatments you may or may not want.
- Mention that you would like time to discuss future planning for your care. You should do this even if you’re well or it’s early in your illness.
- If you have completed a living will or health care proxy, be sure to tell your healthcare provider and share a copy with him or her.
- Finally, at any point in your illness if you are experiencing symptoms and stress, ask for the palliative care referral!
Find a Provider
GOCCNJ Palliative Care Provider Directory
Meet the Palliative Care Team
The palliative care team will spend a lot of time with you and your family. They will assess your pain level and other symptoms. They will discuss and explain all of your treatment options. And above all, you will tell the team what matters most to you so that they can help you match your treatment options to your goals.
But what should you ask the team during your first meeting? Here are some suggestions:
- What can I expect from palliative care?
- Where will my care be provided (e.g., in the hospital, home, nursing home)?
- Who is on the palliative care team?
- What are your recommendations for my care?
- What decisions need to be made by either my family or me?
- Will you help explain my treatment choices and the issues involved in making these decisions?
- Will you communicate openly and candidly with my family and me about my illness?
- Will you continue to be involved in my care when I am in the hospital (if you are an outpatient).
- Will you be involved in my care when I am discharged from the hospital or living at home?
- How will you work with and communicate with all my other doctors?
- What will you do if I experience severe pain or other symptoms?
- What support will you provide to my family and/or caregivers?
- Will you still be available to me throughout my illness?
- How can I reach you?
- What resources do you recommend for me to learn more about palliative care?
