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Patient Handout on Patient Advocacy

Harpham, Wendy MD, FACP

doi: 10.1097/01.COT.0000481891.02888.c5

Patients look to their health care team for guidance regarding decisions that impact their health. As discussed in “Advocacy: The Legacy of Ellen Stovall” (OT 2/25/2016), advocacy work can be healing or harmful for patients, depending on what they're doing. Here's a handout designed to help patients understand the risks and benefits of advocacy work, so they can make informed decisions about beginning, continuing or stopping such efforts.

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Patient Advocacy

Dear Patient,

Every day you make decisions that affect your health. This includes decisions about doing advocacy work. Many patients describe advocacy work as incredibly healing. Unfortunately, advocacy work can cause harm, too. This handout will help you discuss the risks and benefits of advocacy work, so you can make an informed decision about starting, continuing, or stopping such work.

What is patient advocacy?

Patient advocacy is any effort that helps other patients. Examples include working with a cancer organization, participating in a survivors' event and raising money for cancer research. Advocacy includes private endeavors, too, such as posting comments on health blogs and talking with a neighbor newly diagnosed with cancer.

Why does patient advocacy matter?

Patient advocates improve patient care by bringing attention to the needs of patients. The support services and access to medical information we take for granted today came about, in large part, thanks to the efforts of past patient advocates. Much work remains to be done! We need better funding for research into better treatments for cancer, side effects, and after effects. We need to ensure that clinicians address the many needs of all patients. Patient advocacy matters.

What are the benefits to you of doing advocacy work?

Potential benefits include...

  • Finding meaning in your illness;
  • Satisfying a desire to express gratitude and give back;
  • Distracting your mind from physical discomforts;
  • Renewing your sense of wholeness;
  • Escaping the self-absorption of illness;
  • Linking joyful activity with “cancer”;
  • Increasing hopefulness for tomorrow; and/or
  • Enjoying the camaraderie of other survivors.

What are the risks of advocacy work?

Potential risks to your physical and/or emotional health include...

  • Physical strain, if it interferes with rest, meals or exercise;
  • Exposing you to infections in crowds (a concern if immunocompromised);
  • Neglecting personal problems;
  • Focusing on cancer all the time;
  • Straining finances, if income affected; and/or
  • Triggering sadness, anxiety, or despair, if another patient advocate gets sick or dies.

How might your advocacy work affect your home life?

It strengthens family bonds if it...

  • Brings family members together with a sense of shared mission;
  • Creates joyful family time;
  • Prompts healthy discussions about the impact of family illness; and/or
  • Increases everyone's hopefulness about you and about life.

It creates conflict at home if your loved ones...

  • Believe advocacy work puts your health at risk;
  • Need a break from hearing about cancer;
  • Begrudge devoting family time to cancer;
  • Worry about the impact on finances; and/or
  • Feel sadness, anxiety or despair if another patient advocate gets sick or dies.

How do you determine if advocacy work is healing or harmful for you?

As part of your routine medical evaluation, we will review your condition and planned activities to determine the potential risks, if any. As your condition or advocacy duties change, we will reassess.

Then you can discuss with your family the risks and benefits. This includes listening to the concerns of your family members and considering the impact of your advocacy on them. If the best answer is not obvious, a one-time visit with a social worker or family counselor can guide you to a healthy decision that minimizes stress at home. Or you can do a test run, pursuing one advocacy project for a short while.

What if your advocacy work stirs conflict at home?

It's common for advocacy work to make patients feel energized and happy, while their family members feel dragged down by it. Nobody is right or wrong.

Look for a solution, ideally one that takes care of your needs and the needs of your loved ones. Most healthy solutions involve compromise. Maybe you can limit your advocacy work to times when your loved ones are occupied with their own activities. Meanwhile, your loved ones can give you some space for advocacy work. Mutual respect and flexibility are essential. Ongoing discussion and adjustments are essential, too, because everyone's needs change over time as the situation changes over time.

What if you want to do advocacy work despite the added stress?

It's wonderful that you want to help others. The good news is that you can probably find meaningful advocacy work that doesn't threaten your health or home life. Keep in mind that, if you do nothing else, you are doing worthwhile advocacy work simply by explaining to your health care team during your visits what it's like to deal with a particular challenge. Pointing out responses from them that are most helpful will help them care for other patients.

What if you are doing advocacy work and want to stop, but feel you can't?

Some patients feel pressure to do advocacy work. Or want to stop doing advocacy, but feel guilty or ashamed. Let that guilt and shame go!

Your two primary jobs are (1) to get good care and (2) to live as fully as possible. At times, living fully may include advocacy work. At other times, your best path to a fulfilling life includes resigning from all cancer advocacy work to pursue activities having nothing to do with health. Remember, you are doing vital advocacy work with everyday gestures such as donating to someone else's cancer walk or giving a neighbor the name of a good doctor.

We are on a shared mission with you to improve patient care—your care and the care of all patients. Together, let's make wise decisions about your advocacy efforts today, tomorrow, and every day.

Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.
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