Being Your Own Patient Advocate

I was recently questioning a patient about why I’d not gotten results of tests I’d ordered. Her reply, “I’d like to get my labs done, but I’m still dealing with my insurance company to ensure all the right codes are used, the labs are covered, and to find out what my out-of-pocket costs will be?” How can I argue with a patient that is advocating for herself? I can’t and won’t – she’s doing as I’ve asked, being her own advocate.

There are several truths that I have come to appreciate in the medical field. None is as important as the concept of a patient advocate. This is the concept that simply states, “any activity which ultimately benefits a patient” (Torrey, 2017). While this may seem very simple from the initial point of view, what I have found is a delusion of most patients and their families. I often hear statements about how the physician/provider should be the one to advocate for the patient. In fact, there is a whole generation of people whom grew up with following all the doctor’s orders without question as “the doctor knows best.” There is definitely some truth to this statement, but it is not the end-all of patient advocacy. The biggest and first aspect of patient advocacy is the PATIENT. Yes, you, the patient! Additionally, patient advocates can be composed of caregivers and family/friends (as long as the release of information is in place to allow communication about your care). Moreover, there are other groups of patient advocacy that include specialists in the community or in-hospital specialists (ombudsman), groups (for and not-for-profit) that develop policies and advice that help patients, and government groups that develop legislation to improve systems or processes for patients (Torrey, 2017).

While some may argue with the idea that the patient is their own best advocate. To a provider, having patients that are their own advocates actually help us to help them. For instance, when a patient has done some research regarding a medication to prescribe or spoken to their insurance company regarding out-of-pocket costs various testing or brings in a copy of all old labs or imaging – this helps me to educate the patient and myself, rethink my decision of what I’ve ordered and the treatment plan direction, or prompts me to review (and possibly revise) how I’ve documented/coded a test.

With the changes in the medical environment today with electronic medical records, patient portals, and information being exchanged via fax and email, a busy provider’s office may not be able to keep tract of all the pieces without some help. What may seem like an important part of information to understand what is going with your health and possibly to calm the nerves of worry, may be viewed by your provider as minor and not something to worry over; hence you (the patient) may be left in the dark waiting on a phone call that will never happen.

Ultimately, being your own patient advocate means being informed about your care and treatment plan, having open 2-way communication with all your providers and encouraging them to communicate with each other, opening communication with your insurance company to understand your policy and its limitations, and being able to assert your needs and concerns to all people involved in your care. Sometimes it can even be as simple as asking for services and tests to be discounted or minimized. Regardless if you don’t ask or don’t understand, then you are missing out on actively participating in your own care.

In an article written by the Asperger’s Experts (n.d.), the author(s) laid out 6 steps to advocating for yourself. I have added some ideas to this list.

  1. Know what you need and why.
    • Start by brainstorming on a piece of paper.
    • Why you are asking what you are.
      1. If you are unsure of what your needs are, then being making a list of symptoms or questions. Often what may seem unrelated may actually be a small part of a bigger picture.
  2. List in an organized manner:
    • Organize your thoughts and questions to help to articulate what is most important to you.
      1. Sometimes it can be difficult to be heard. For example, you may have concerns about a rare (possible) side effect of a medication, but the provider is either not hearing your concerns about the side effect or has their own reasons for focusing on other aspects of your care. Either way, it is important to be on the same page as your provider(s).
      2. As providers we are taught to focus on more life-pressing concerns, like prevent a heart attack or stroke. But if the medication prescribed is causing problems in your life or quality of life, then your primary concern needs to be heard. Ultimately, treatment plan compliance on the patient’s part requires the patient to agree with the treatment plan.
      3. Take notes in your medical appointments so that you can review and/or research things that were discussed. Sometimes these notes may be helpful for your other providers of the treatment plan.
  3. Find resources to speak to (if outside help is needed):
    • Find a resource that you trust and ask for their help in backing you up, or to bounce ideas off if needed. Usually it’s best to pick someone who is a cheerleader in life for you and someone who knows you very well and accepts you for who you are.
    • Review with this source close to you so that you can get clarity in what you need to ask for, you may want to ask this person to help you find resources if needed.
      1. It is always ok to get a second opinion about your treatment plan and care. If you are not comfortable with how your care is being handled, then ask your provider and get another opinion if needed. Health care decisions need to be very individualized, and not a one-sized fits all type of approach.
  4. Clearly ask for what you need:
    • If you don’t know what you need go back to step 1 and clarify a little more.
    • Ask your resources for space to process and to ask others for what you need based upon the list that you made. What this means is you ask for the time to speak slowly and clearly about what you need and have them listen. It is at this point you can investigate what you need with this person based on the list of what is important to you.
      1. This may require that you schedule an extended visit with your provider(s) to have a conversation that is less rushed. Don’t be afraid to ask for an extended appointment if you need time.
  5. Put a game plan in place:
    • Organize with the person the thoughts that came to you when talking this out.  List them out, group them, whatever seems appropriate. Lending a problem organization can often make the solution clearer.  Doing this with the person that you have identified as an advocate gives them insight into your values and motives so that they may better support you.
    • Generate steps to tackle the problem, from the first action to resolution.
    • Make the steps clear, single action steps that build on each other. Think through each action.  The steps should be related to the challenge, clear, measurable and manageable.
    • After you have your thoughts organized, it is at this point you start to find outside resources to help you get the things that you have issues with resolved.
      1. Sometimes tackling a life changing issue such as high blood pressure is a lot of work and effort on both the provider and the patient’s part. If you, the patient, have a game plan on how to make changes and stick to them, may in the long run help you alleviate/lessen/prevent the medical condition in the first place. Much of primary care is all rooted in prevention or active participation.
      2. I often tell patients to help me help them. What I am really saying is to be active in your care, do your homework, and make good choices about lifestyle aspects that effect your health.
  6. Hold yourself responsible:
    • Make sure to give yourself timelines and hold yourself accountable for these action items as you do them.
    • If a step is complicated or takes too long, break it into smaller steps.  Everything happens one action at a time. Often we get blocked by obstacles that just aren’t yet broken into simpler action steps.
    • Work on the list.  Do the tasks. Feel good about making progress!
      1. Health and wellness versus dis-ease and illness are inter-related and have various levels. So don’t blindly accept the treatment plan and let it happen to you. Instead, take control as head of the treatment plan and work with it to help yourself.
      2. Just as we are our own worst critics, we are also our own best advocates!

 

 

References:

Asperger Experts. (n.d.). Being a Self Advocate. 6 Steps to Advocating for Yourself. https://www.aspergerexperts.com/basics/advocating-for-yourself/

 

Patient Advocate Foundation. (n.d.). Common Roadblocks to Care. Advice to Prevent and Deal with the Most Common Insurance-related Hurdles. https://www.patientadvocate.org/wp-content/uploads/sites/8/CAG-Common-Roadblocks-to-Care.pdf

 

Torrey, T. (2017, Mar. 24). Patient Advocacy from Top to Bottom – Organizations to Individual Advocates. Who Provides Patient and Health Advocacy? https://www.verywellhealth.com/who-provides-patient-and-health-advocacy-2614914

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