How can I (better) advocate for myself in medical situations?

By Judith Schwarz, PhD

End of Life Options Conversations with Judy. eolcny.medium.com.
This article is part of the End of Life Options: Conversations with Judy series — to learn more about the series, click here.

My doctor doesn’t seem to take my concerns seriously or really listen to what I want, what can I do?

Patients need to adequately prepare themselves to be “successful” during an appointment with their doctors. Successful preparation begins at home before the appointment occurs. Start by making a list of all the concerns you have regarding your current illness(es) and your questions, wishes, and/or hopes for treatment. Study the list carefully and then begin the process of paring it down until you identify your most important current concerns. Remember that, unfortunately, doctors often have little time for lengthy conversations with patients; a discussion of lab results or medication changes can often consume all available time. I suggest that, when calling to schedule the appointment, make it clear that the purpose of this meeting is to discuss “goals of care.”

Goals of care describe what a patient wants to achieve during an interaction with their clinician, within the context of their current clinical situation. Goals of care are the clinical and personal goals for a patient’s care that are determined through a shared decision-making process with the treating clinician. Understanding the patient’s care goals in the context of a serious illness allows the clinician to align the care provided with what is most important to the patient.

Before the appointment, study your list of concerns and decide which three or possibly four issues/questions are most important to discuss NOW. Tell your doctor that you have 3 or 4 issues/questions you want to discuss. Be prepared with a concise summary of each issue (3 or 4 sentences each!) If the physician cannot stay focused on YOUR issues, point out that you are not feeling heard, and ask that they please attend to your priorities.

Understand that there may not be sufficient time to get answers for each of your concerns, but this model can be utilized in subsequent meetings and with practice, can be followed with all future appointments. At the end of the appointment, if you still have questions or concerns, and the next visit is not in the near future, you can ask to make another follow-up appointment specifically to discuss remaining questions. Most likely a “goals of care” discussion will not be necessary for each appointment. Such discussion may occur several times a year unless your disease is progressing rapidly and is accompanied by deterioration in your quality of life. In that case, a discussion about your comfort and desire for palliative interventions ought to take priority over all other topics.

It is always advisable to be accompanied by a family member or close friend when meeting with your physician. That person can take notes regarding the discussion and plan for care, and in addition, can gently help the patient stay focused on the 3–4 issues previously identified as important to discuss.

If you find that your physician continues to not take your concerns seriously even after you have indicated your dissatisfaction, it may be time to seek an alternative clinician. While that sounds difficult, check with good friends and family members about their relationships with medical providers. When you hear about a clinician who seems more open to listening and partnering with patients, call and see if they are taking new patients and if they take your insurance. Keep trying until you find a clinical partner with whom you can work.

Judith Schwarz is a PhD prepared nurse, and has provided End of Life Counseling for 20 years for adults with living incurable/progressive or terminal illnesses. As the Clinical Director of End of Life Choices New York (EOLCNY), she answers New Yorkers’ questions about a range of end of life issues.

To learn more about EOLCNY’s counseling program, click here. To connect with Judy, please email judith@eolcny.org.

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End of Life Choices New York

EOLCNY provides advocacy, education, counseling, and support to expand end of life options and improve care for New Yorkers.