A meeting with your palliative care physician and team is a critical opportunity to get the information, help, and care that you need. To get the most out of your appointment, it's important for you to plan ahead. Use the following tips to help you prepare for your palliative care appointment.
Know Your Palliative Care Team
You may think you're just meeting with a palliative care physician, but palliative care is much more comprehensive than that. Your palliative care team may include physicians, nurses, social workers, dieticians, therapists, chaplains, and other specialists. Familiarize yourself with the palliative care team and come to your appointment prepared to ask about which services will be available to you.
Know Your Goals
It's important for your palliative care team to know your wishes during treatment and also at the end of life. Establishing your goals of care can help direct your palliative care team to focus on what's most important to you. Goals of care can change over time and over the course of treatment and therefore need to be revisited often.
Before your appointment, take some time to reflect on your desires for your health care right now and what your desires would be at the end of life. If you don't already have your wishes written down, your first palliative care appointment is a great time to ask relevant questions. Familiarize yourself with different options for making your wishes known so you will be prepared at your appointment.
Make a List
Let's face it -- you have a lot on your mind right now. If you don't write it down, chances are you'll forget it. Come to your palliative care appointment prepared with a list of topics you want to discuss and specific questions you want to ask.
Some topics you may want to discuss include:
- Pain and symptom management: You may want to know how your pain or other symptoms will be managed by your team. Come prepared to share your expectations for care.
- The palliative care team members: Now that you are familiar with the palliative care team, you may want to discuss which members of the team will be assisting you.
- Your goals of care and family wishes: You've had time to examine your personal desires. Come prepared to discuss your wishes and what is important to your family as well.
- Communication: Come prepared to share with your team how you would like to communicate health information. Some people want frank honesty and as much information as possible while others prefer limited information. Let your team know how you want them to handle communication with you.
Also write down specific questions you want answers to. I suggest writing these down in a notebook and leave plenty of room between questions to jot down the answers. It will be just as difficult to remember what the doctor said as it will be to remember which questions you wanted to ask in the first place. Write it down!
Bring a family member or friend to the appointment with you. Not only will your partner be able to offer emotional support, they will also be able to take their own notes and help you remember what was discussed. I recommend having your partner take their own notes both to help lighten your load and so he/she is able to discuss and compare notes with you after the appointment.
Bring As Much Information With You As Possible
Don't assume that the palliative care team will have all of your medical history available to them. Bring with you to the appointment as much information as you have about your diagnosis, treatments, and progress reports from other doctors. Also have a list of all the medications you are currently taking and those you have taken recently, being careful to list the dose and frequency with which you take the medication.
If you haven't started a treatment binder, now would be a good time to organize all of your information in one place.
Lastly, Bring an Open Mind
You may have goals, wishes, and desires that may not be realistic or feasible. Be prepared for a reality check at the appointment and try to be open to discuss other options. Also be open for a second opinion if you are asked to make decisions that don't seem right to you. Be willing to look at all options available and take in all advice and recommendations given to you.
Once you feel comfortable that all your questions have been answered, your concerns addressed, and all options presented, take some time for self-reflection and discussion with loved ones before making any important decisions.