How We Can Advocate For Ourselves As Patients

Vulnerability, Uncertainty, and Dependence Shape The Experience

Photo by Annie Spratt on Unsplash

I’m not denying the reality of illness or the need for medical care, but I do want to be an advocate for myself, my beliefs, and my values in the process.

My most recent medical experiences were outpatient eye surgeries about six years ago; they were successful and went smoothly. My last hospitalization was in the 1960s, when my children were born, and I’ve visited the emergency room three times since then: for a rabies shot, a broken wrist, and a deep cut requiring stitches. I currently take no prescription drugs.

I go to the doctor when necessary - probably not often enough, some would argue. My intention is never to be a patient. Several loved ones were, and I saw how that went.

It’s true that having a primary care physician can provide essential, personalized healthcare by focusing on prevention, early disease detection, and the management of chronic conditions.

Similarly, a hospital can provide immediate, specialized, and life-saving care for severe injuries, critical illnesses, and emergencies. It ensures access to advanced diagnostics, 24/7 care, and the support needed for acute conditions.

It’s also true that, despite my best efforts, I may need a doctor or hospital someday. If or when that time comes, I want to advocate for myself as much as possible.

Experts say patients want to be heard, validated, and treated with dignity. They want warmth, compassion, effective communication, and social connection to help cope with fear, pain, and uncertainty during treatment.

What I’m Finding:

• While some readers have wonderful relationships with their doctors and positive experiences with the system, that has not been my experience for the most part.

• However, I haven’t put much effort into finding the right care provider either.

Experts say that to make sound choices, we should pause, gather information from trusted sources, and involve a support system.

What I’m Finding:

• In several cases, particularly as a caregiver, pauses were not offered. A decision was required in the moment, or they made the decision.

Experts suggest that if we find ourselves feeling pressured, we should take time to think and reflect before making a final decision.

What I’m Finding:

• I was rarely given time to make a decision, but I also didn’t know I could ask for it.

Experts advise us to talk with friends, family, or a professional about our fears to prevent them from increasing stress.

What I’m finding:

• I don’t want to burden family members with what I consider to be my problem. Maybe that thinking needs reassessing.

We can also consider these guidelines:

Before and During Appointments

• Write down our top concerns, detailed symptoms, and questions.

• Bring a trusted person along to help remember the information, or record the appointment for later review.

• Document daily symptoms, medications, and diet, which makes it easier for a doctor to understand our issues clearly.

• Keep a medication list that includes prescriptions, over-the-counter drugs, and supplements to prevent dangerous interactions.

Communication Strategies

• Use “I” statements to express our concerns, such as: “I’m worried that this medication is causing new side effects.”

• If we feel unheard, we can say, “I’m uncomfortable with this plan.”

• If we don’t understand a term or plan, we can ask, “Would you explain what that means?”

• Repeat what the doctor says to ensure we’ve heard correctly.

In the Hospital

• Hospitals have staff who can help us navigate care and resolve issues. Know who they are and what resources they offer.

• As patients, we have the right to informed consent, to refuse treatment, and to expect privacy.

• We can confirm the name and purpose of a medication, procedure, or test beforehand, and ensure we understand follow-up instructions, including medication dosing.

Feeling Unheard or Dismissed

• If we’re uncomfortable with a diagnosis or treatment plan, or consistently feel rushed or dismissed, we can seek other medical opinions, though that might involve out-of-pocket costs.

• If a doctor refuses to run a test or provide requested treatment, we can ask them to document their reasoning in our medical record.

Key Phrases for Self-Advocacy

• I know my body, and this is not normal for me.

• I want to explore other options.

• Would you help me understand why this test is necessary?

Many of us, as older adults, will need to visit a doctor or go to the hospital at some point, or we may have loved ones who do. There are steps we can take to support and advocate for ourselves and them.

A wise question to be considering is: “How can I be my advocate in medical settings?”

I want to share the lessons I’ve learned over my years of life and caregiving with as many people as possible. More than anything, I want to continue to expand our community of readers.

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Dr. Janice Walton is a psychologist, a widow, a mother, a grandmother, a great-grandmother, and a writer. She’s been writing a newsletter on Substack for over five years and is in the process of having a book published based on the articles.