Step 1: First Things First
The first step is to talk to your doctor. If he or she hasn’t suggested palliative care yet, you may need to make the first move. Some things to include in that conversation:
- Ask you doctor to fully explain your illness and any available treatments, including clinical trials or experimental treatments.
- Tell your doctor you are interested in palliative care and ask for a list of local resources.
- Explain to your doctor what quality of life means for you. That might be relief of pain and symptoms, maintaining your current activity level, spending time with loved ones, etc. Be sure to include any cultural or religious practices that are important to you as that may influence care.
- Discuss your wishes such as what curative treatments you want to pursue, resuscitation (CPR, mechanical ventilation), and artificial feeding. Be sure your doctor has a copy of any Advanced Healthcare Directives you may have completed.
Step 2: Locate Service
Hopefully your doctor has now provided you with a list of resources including local hospitals that have palliative care programs. If he hasn’t, you can find a hospital in your area by visiting The Center to Advance Palliative Care’s resource at www.getpalliativecare.org/providers .
Your doctor may have also provided you with home health or hospice agencies that provide in-home palliative care. A case manager or social worker within the hospital can also provide you with a list of agencies that they recommend. Many hospice agencies are providing palliative care, sometimes called pre-hospice or bridge programs, to meet the needs of patients and families that desire palliative care at home but either do not meet hospice criteria or decline hospice to pursue curative treatments.
Step 3: Interview Potential Palliative Care Teams
This is a job interview and you are the boss! You want to make sure that you are getting the best possible care available and care that is tailored to you and your unique needs. Questions to ask include:
- Where will the care be delivered?
- Who are the members of the team and what can I expect from each one?
- What decisions need to made by myself or my family and will you help us in making them?
- Will care follow me if I go to the hospital (if you're at home) or if I go home (if you're in the hospital)?
- What happens if I am experiencing severe pain or other distressing symptoms?
- What kinds of support do you offer for my family or caregivers?
- Will you continue to work with my doctor/s?
- What are your recommendations for my care?
You may want to interview several palliative care programs to find the one that best serves your needs. Keep in mind that if at any time you feel you’re not getting the care you need or deserve and the problem isn’t resolved when brought up with management, you have the right to choose another palliative care program.