Have you ever gone to an appointment with your doctor for a physical exam or because you are not feeling well and walked out of that visit thinking “I should have asked about this,” or “I forgot to mention this?” Perhaps you went back for a follow up appointment only to receive the news that you have CANCER.
All you can think of is:
Maybe the doctor made a mistake?
I know I was a little tired and fatigued, but not that much.
I lost 20 pounds without trying much, but…
Cancer, Cancer, Cancer!
I go blank...I feel numb...I hear nothing but Charlie Brown’s mom, nothing makes sense.
I have to get out of here, I need to think!!! I need to process this information!
But the doctor keeps talking to you about the cancer or whatever the potentially terminal condition is. Finally, you reply, “Look doctor, I need to process this information. How about if I come back later? I will make an appointment next week.”
You exit the office and run to your car. Perhaps you break down and cry, or you get angry, or you just think “Oh my God, what’s next?” This is a good time to consider adding an End-of-Life Doula to your care team.
End-of-Life Doula’s (EOL Doula) can be added to your team as a consultant or as a permanent member of your health care team especially when you’re facing a life-limiting or life-ending disease. Doulas can help you prepare for your physician visit, accompany you to the visit, debrief with you after a visit, and follow up with you within a week or two after the visit to help you plan your next steps.
PREPARING YOU FOR YOR PHYSICIAN VISIT
An EOL Doula will meet with you to help you prepare for your visit. This would include, but is not limited to helping you identify the purpose of the visit and what you want to accomplish. Some things to think about in preparation for this visit are:
Advance Directives: Do you have an advance directive? If not, we can talk about completing one.
POLST form: Do you have one and should you have one? Doula’s can help you access this form.
Medication List: Make sure you bring with you a list of your medications, dose taken, and times when you take the medication. This includes prescription medications as well as over the counter and herbal medicines. Some cell phones have a place where you can store these. On Apple I-phones, iOS 8, released Medical ID, Emergency Access where you can enter your medications, while Android 7.0, Google released Emergency Information. Also, if you have it on your phone, the emergency service providers such as medics can access your phone for these without a password should they find you unconscious.
Your agenda for the upcoming appointment. We help you identify what you want to talk to your Doctor about and ensure that you share with him/her your advance directive and your wishes for care. If a POLST is needed, review that with the doctor and get his/her signature on the form.
Role play your upcoming appointment if that is helpful to you. This can help reduce anxiety and offer insights about how the visit may go. Role playing can offer reassurance and help prepare emotionally as well as logistically so your needs are best met during the appointment.
THE PHYSICIAN VISIT
During the appointment with your doctor, the doula attends with your permission. During this visit, the doula will listen and take notes on the agenda items you agreed upon to discuss with the doctor. The doula will also write down any other ideas and interject questions that may come up during your discussion. You, the patient, advocates for yourself. The doula has your list of discussion items and will support that with cues to remind you of the things you need more information about. This is also a great way to prioritize your questions, and clarify concerns given the limited time the physician may have.
We make sure all the questions and concerns are discussed beforehand as well as any clarifying concerns that may come up during the appointment are addressed there and then.
DEBRIEFING THE VISIT
The doula meets with you immediately after the visit and discusses what you heard the doctor say. She/he will review their notes with you and ensure you have a copy of those notes. Possible next steps will be identified, and she/he will ensure that you are clear on what kind of follow up you need to do and when that follow up needs to be done.
Within a few days to a week, the doula will check back and see how you are doing with your follow up tasks. They will be sure you made your follow up appointments and addressed any issues that came up in the meeting with the doctor. Ultimately, our role is to empower you to advocate for yourself and coach you along the way.
Having an End of Life Doula educating and mapping out with you the questions, material and support for a physician visit, can be key to understanding your health care needs, wishes and support network. At Gentle Passage Doula Collective, we offer this as one of our services. Some of our members also provide this service. We look forward to working with you soon and setting you up for success.
Please subscribe to our newsletter for more content and resources that will help educate you and your loved ones so you can prepare for death.
Gentle Passage Doula Collective
The tools, resources and information does not provide medical advice. It is intended for informational purposes only, not advice or guarantee of outcome. It is not a substitute for professional medical advice, diagnosis or treatment. Never ignore professional medical advice in seeking treatment because of something you have read on the Gentle Passage Doula Collective Website, downloaded resources and/or educational material, or misinterpreted the information/context/educational sessions. If you think you may have a medical emergency, immediately call your doctor or dial 911. Gentle Passage Doula Collective and its members are not responsible for errors and omissions in reporting or explanation. No individuals, including those under our active care, should use the information, resources or tools contained within to self-diagnosis or self-treat any health-related condition. Gentle Passage Doula Collective gives no assurance or warranty regarding the accuracy, timeliness or applicability or the content.