Patient Advocacy Advice From a Colon Cancer Survivor

When you’re diagnosed with a serious health condition like cancer for the first time, you find yourself entering a new world that’s inherently challenging. In an instant you’re dealing with the diagnosis, the prognosis, your future and your present. Beyond emotional management, you also must deal with paperwork, insurance coverage, a new lexicon of language and a health care team whom you’ve likely never met before.

And even though you are likely overwhelmed by all of the emotions that come with a cancer diagnosis, it’s also a critical time for you to find strength and focus. A component of that strength includes asking questions of your providers and being an equal partner in the relationship to drive the outcomes you’re looking for. In other words, you must become an advocate for yourself or the patient you’re supporting.

What Patient Advocacy Really Means

The definition of advocacy from Merriam-Webster is the act or process of supporting a cause. I’ve never defined my being a cancer patient as a cause, but I found this to be an interesting word to consider. I turned to the dictionary again to find out the definition of a cause and came back with a reason for an action or condition. As I connected these two words together, I realized this is exactly what a patient is facing: a condition that requires an actionable response.

Advocating for oneself or others you love can be hard. This is especially true if you are a quiet person or someone who tends to follow rules. I have been a rule-follower all of my life. When I was younger, I also felt very uncomfortable asking for help from anyone. This changed somewhat when my mother got terminally sick with cancer, and changed significantly when I was undergoing chemotherapy due to my own cancer diagnosis, when I spent four months barely being able to get out of bed.

Learning to Advocate for My Mother With Lung Cancer

I was 36 when my mother died. One December morning, she landed in the hospital and several tests came back confirming lung cancer. Prior to that day, I had never had to support a patient. I didn’t know what patient advocacy was. But my sister and I jumped right in, doing the best we could to figure out what needed to be done, literally minute by minute. When my sister was available to be present for our mom, I would head home. And when she needed to head home, I would come and take her place.

It was three weeks between diagnosis and death for my mom. During those three weeks, my sister and I grew more confident in how we could advocate for the care we wanted for her. When she needed her pain managed, we proactively went and asked for her meds. We posed questions about what was happening to her and did not accept statements from her doctors like “her life was out of their hands.” Sensing that no one was really looking out for her, my instincts drove me to find a way to get her out of the hospital she had been admitted to and transferred to a hospital with a stronger reputation for patient care.

At that time, I didn’t really know how to do any of it. What’s the order of how things happen? What’s the difference between being accepted by a doctor vs. just showing up at the front door of a hospital requesting admittance? Will insurance pay for an ambulance to transport her? I didn’t know anything, nor did I have a network of health care connections to help me figure it out. On top of all that, I dreaded calling people I didn’t know on the phone to ask them for help.

But I did, despite the unwritten rules telling me to stay quiet and just follow the directions I was given. Instead, I advocated for her because she was in no condition to advocate for herself. And from that experience, I began to learn how to advocate for myself during my multiple cancer diagnoses, surgeries, chemotherapy and potential new cancer scares.

Why Speaking Up Is Worth the Discomfort

Advocacy isn’t a word that means one thing, and it can be complicated. Patients are often emotionally energized, and doctors are also human and are trying to manage the personalities and expectations of many patients with different needs. I’ve had my own interactions with health care providers where speaking up has gotten me into some uncomfortable conversations. But I don’t regret speaking my mind, ever. After all, it’s my life and death we’re dealing with. Who else is better to speak on my behalf than me?

5 Tips for Advocating for Yourself or a Loved One

So here’s what I’ve learned from my experience both as a cancer patient and caregiver in approaching patient advocacy:

• Find the strength to put your fear aside. If you think about the consequences, it’s likely you will actually help your quality of care, not hurt it.
• Speak up. Even if it’s uncomfortable. But remain respectful.
• Trust your gut. You know your body better than anyone.
• Make sure you’re listened to. Don’t allow yourself to be brushed off.
• Look to your wider care team. If you don’t get the response you want, think about what other supporters in your health care ecosystem (doctors, PAs, technicians, family members) may be able to help you get the answer you’re looking for.

There is no situation more personal than a serious health care diagnosis. And there is a delicate balance between asking questions and speaking up vs. being a jerky patient. But knowing when and how to advocate can bring you a certain amount of peace that you’ve done all you can to get the answers and outcomes you need.

This post was written and submitted by Rachel Martin. The article reflects the views of Martin and not of CURE®. It is not intended as medical advice.

For more news on cancer updates, research and education, don't forget to subscribe to CURE®'s newsletters here.