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My Rearview Mirror: Reflections from a Former Patient Advocate

Posted By Tiffany Christensen, CPXP, Thursday, August 15, 2019
Updated: Tuesday, August 20, 2019

I became a patient advocate for a major medical center after my second double lung transplant (first for cystic fibrosis and second due to chronic rejection) and quickly learned that I was quite naïve about the job I had just accepted. In the three years I worked with CMS Guidelines to resolve complaints and grievances, I went home many nights crying, gritted my teeth all night long and woke up every Monday with a “new plan” to make this job into what I had hoped it would be. I wanted to help people, I wanted to be what the title said I was; “advocate.” Instead, I felt like my days were spent getting yelled at about things I could not really fix while emotionally fighting to stay above water in a sea of conflict. 

In the past month, The Beryl Institute has dropped a new podcast featuring four patient advocates and a White Paper exploring the role and all of its many sides. Both of these resources brought up a lot of memories for me and I took some time to reflect on what I experienced nine years ago. What I found was a hearty serving of regret. The crying, the teeth grinding and all of the other manifestations of my stress did not have to be so intense; perhaps they did not have to exist at all. My biggest regret? Not being able to manage my own thoughts and recognize that the patients were not stressing me out but, rather, I was stressing myself out. Perhaps a few examples would be best to illustrate what I mean.

What happened:

She knocked on my office door and I opened it to find an agitated and slightly frantic woman who began talking immediately, making it impossible for me to even invite her in. We stood in the doorway as she told me that her husband was being moved out of the ICU to the step-down unit after a heart transplant and she did not want him to move because the ICU was a much nicer environment than the main hospital.

What I thought:

“Well, of course the ICU is a nicer facility…it’s brand new and the step-down unit is in a building built in the 1980’s! Doesn’t she understand that staying in the ICU means her husband is sicker and moving to step-down means he’s getting well? That’s a good thing! Doesn’t she see that if her husband stays in ICU when he doesn’t need it, he’s keeping someone who is very sick from being in the bed they need? She should better understand the system and she should know that keeping her husband in ICU is just not an option.”

Looking Back:

Reflecting back on this interaction and so many others, I regret thinking this way. Not only because I was very far away from “meeting people where they are” but because these thoughts actually caused me stress. If I am being honest, I had thoughts like these about most of my interactions during the day. If we pile these thoughts on top of each other we have a day filled with frustration and a sense of always swimming upstream. I now know that there is a way to adjust my thinking so that I no longer cause myself stress AND I am more effective in these types of interactions.

Often, I carry a belief or judgement with me that I am not even fully aware of. In the example above, one of those beliefs might be, “Patients and families need to understand the system.” In this case, this would mean understanding that patients in ICU need to be a certain level of acuity to be in the ICU. When I believe the thought that this woman in my doorway should know this already, I feel frustrated with her assertion her husband should stay in the ICU. Internally, my chest clenches and I feel a little hot. I am impatient as she talks and am ready with my response of why “this is a good thing” and, before she is done speaking, I interrupt her. She does not feel heard and now the rapport is breaking down and I walk away frustrated that I have to talk with someone who is unreasonable. 

It didn’t need to be this way. The problem was not her request. The problem was my belief that she should understand the system. It’s my internal, unconscious belief that caused me to be irritated, not her. It was my internal, unconscious belief that made me impatient and took our conversation in a negative direction when it could have been one of support and encouragement. We could have ended in a place of celebration because her husband was leaving the ICU. 

So, why am I now looking in my rearview mirror and thinking I could have done things differently? Because now I have some tools to help me identify my stressful thoughts and turn them around. There are many ways to do this but, in this example, I want to use “The Work of Byron Katie” to see how this interaction might have played out differently.

Patient’s wife: “My husband is being moved out of the ICU after his heart transplant. I do not want him to move because the ICU is a much nicer environment than the main hospital!”

My internal thought/reaction: This woman doesn’t understand how healthcare works—of course her husband can’t stay in ICU! Other people need those beds and leaving the ICU means he is getting better so she should be happy about that!

I could pick multiple thoughts to inspect here: “she should be happy,” “she should understand how healthcare works” and “other people need those beds more than him” are all reactions that would benefit from exploring so we’ll just pick “she should be happy” and do a modified version of “The Work”:

 

“She should be happy”: Is that true?

Yes! Her husband is getting better!

 

“She should be happy”: Can I really know that that’s true?

Well, no, maybe there are too many other things/worries going on for her to be happy about this

 

How do I react, how do I behave, when I think this thought “she should be happy”?

I am frustrated with her for not being happy! I speak in short sentences and think about other people who have it worse, who are not getting better. I try to hurry her up so we can wrap up the conversation because I want to get on to helping others who are having a harder time than her husband.

 

Who would I be in that moment if I was incapable of thinking the thought “she should be happy”?

I would just be a person who is listening. I might be happy for her husband, even if she’s not able to see yet that leaving ICU is a good thing. I would be interested in her perspective and I would want to know more about why she prefers the ICU over the main hospital. Her concerns would be most important to me in that moment.

 

Can you see any non-stressful reason to keep the thought, “she should be happy”?

No. My irritation doesn’t serve anyone and, the truth is, whether she is happy or not is none of my business.

 

In healthcare, it is very easy to get into a cloud of irritation. It is such a stressful place to work that sometimes finding flaws in those we serve or those we work beside becomes a habit and we don’t even realize it. Sometimes, we work to be “less judgmental” in order to be a better person but we fail to notice that these kinds of thoughts hurt us first and those we interact with second. For me, realizing that I am in charge of my own stress just by noticing and inspecting my own thoughts is such a relief. The world isn’t happening TO me, I am responsible for how I see it.

I regret that I did not have these tools when I was a patient advocate. It’s my hope that sharing this might help someone who is currently working in healthcare see that there is a way out of this kind of internal stressor and give it a try. As you go about your day, notice your thoughts: 

“Patients should be nice to the people who are trying to help them”

“My boss should understand how much stress I am feeling and not give me more work”

“My colleagues should apologize when they are late”

As you notice these thoughts, remember to ask yourself the questions when you have a moment:

  1. Is it true?
  2. Can I really know that it’s true?
  3. How do I react, how do I behave, when I think this thought?
  4. Who would I be in that moment if I was incapable of thinking the thought?
  5. Can you see any non-stressful reason to keep the thought?

Thank you to all of the patient advocates who are able to remain caring and grounded in a very challenging role. Thank you to everyone who works in healthcare and is able to be understanding and forgiving towards patients, families, staff and clinicians. Whether or not you choose to use this model of personal inquiry, I hope you are able to find peace within yourself during even the most frustrating or chaotic moments in your professional life. Patients matter and those who serve them matter too. Care for your own heart and it will then naturally care for patients.

 

Tiffany Christensen, CPXP
Vice President, Experience Innovation
The Beryl Institute

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Robin Luckett says...
Posted Tuesday, August 20, 2019
Thank you so much for this awesome article. Excellent work.
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