to what end?

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Me in my glory days.  Photo credit: David Hungate

I have been slogging along as a family advocate and then as a patient in the health system for the past 16 years.  I’ve had paid positions at two different children’s hospitals where I was deeply committed to improving the family experience.  I even moved my family to another province for one of those jobs. I’ve logged countless hours as an unpaid volunteer on committees.  I’ve spoken at many national and international health conferences as an inspirational speaker.

Before that, in the 1990’s, I worked on projects for a provincial health department in funding, costing and information management.  In the 1980’s, I was a nursing student for two years before transferring into English, worked as a nursing attendant and went on to get a graduate certificate in health care administration.

I tell you all this not to prove my credibility, but to say that I’ve been around the block a few times.

All of me is tired.  Getting cancer two years ago tipped me over the edge.  Improving health care for patients and families has been my life’s work.  My ongoing experience in oncology has shown me that things have not improved for patients one little bit.  To what end have I dedicated myself to this work?  What difference have I made?

I’m not trolling for compliments.  I am truly wondering where the evidence is that my hundreds and hundreds hours of paid and unpaid patient engagement work has made any positive change.  There is no evidence in my recent clinical experience.  So why continue?

I started my advocacy work in pediatric health care after my son was born with Down syndrome.  I co-founded a community based peer support program, lobbied for a Down syndrome medical clinic and helped build a family council at a children’s hospital.  If you had asked me, I would have said that I was trying to make meaning of my son’s diagnosis.

Reflecting on this seemingly noble rationale, I recognize that this is actually rather insulting to my son.  What does this say about how I felt about the meaning of my son’s life?  Now I know that he has meaning by simply being human.  I don’t need to try to change the world to validate his worth and existence.

I would have also said that I did advocacy work to ‘make a difference.’  But other than a shot to my ego and some brief warm fuzzies for the audience, what difference did making myself vulnerable and standing behind a podium sharing my story (and even worse, sharing my son’s story) even make?  Show me the evidence.

This past week I had a trifecta of events.  I heard Andre Picard speak at City Conversations at SFU but his wonderful talk rattled me.  If I had been less worn down and brave enough, I would have stood up and asked:  What can us patients do to improve Canada’s health care system?  His clear and factual accounts of the myths of Medicare hit very close to home.

“As Canadians, we are all too accepting of mediocrity,” he said.  “Once in the health care system, you ask yourself – what the hell is wrong with the system?”  These true statements chilled me to the bone.

Then I had an unpleasant encounter with a new oncologist.  And then a terrible appointment letter showed up in the mail.  My never-ending shitty patient experience just goes on and on and on.

What the hell is wrong with the system?

All my talk about kindness, compassion and the patient voice has been for naught.  (Read Isabel Jordan’s reflections and Jennifer Johannesen’s critique of the whole patient engagement movement for food for thought).

The past two years I’ve slowly been withdrawing from the patient engagement world.  I no longer accept speaking engagements.  I don’t volunteer on committees or with projects.  I think: what’s the point?

I still rabble rouse on Twitter and Instagram and I write essays on this blog.  I’ve written a memoir and manifesto about health care called The Bird’s Eye View and I’m in the midst of editing it and shopping around for a publisher.  But writing is something in my realm, in my control.   My own self tries to treat myself with respect and kindness.  I no longer rely on health organizations to do that for me, because 93% of the time, I’m deeply disappointed.

I don’t want to deter you if you believe that patient engagement will change the health care world.  This has not been my experience but maybe it is yours.  But I must plead with you: Please don’t allow yourself to be taken advantage of.  Don’t let them ‘use’ your story.  Be particular when accepting opportunities.  Think, as I rarely did:  Why am I doing this?  What is the organization’s intention?  What is my own intention?

Zoom back 12 years and I was at a health conference with a team of family members and clinicians.  Something rotten happened there – we were there as a team, but a team decision was made and I wasn’t even consulted.  I mean, the details don’t matter – I have allowed this to happen to me a thousand times since then.

I left the conference room and went into the elevator to compose myself up in my room.  I was naive and hurt.  The pain of this made me weep.  I had thought I was a full partner and I clearly was there only as a token family representative.

The elevator doors opened and another woman walked in.   It was a mom who had volunteered with another Canadian children’s hospital for many years. I hastily wiped away my tears but I was still clearly upset.

“What’s wrong?” she said, gently hugging me.  “Come to my room and we will have a chat.”

I sat on her bed and cried, feeling betrayed and used by the clinicians.  She comforted me but then said firmly:

Don’t give ever them all of your heart.  Because if you do, they will chew you up and spit you out.  

I’ve given this same advice to patient and family advocates over the years, but have not heeded it myself.  I’ve allowed myself to be treated shittily by the system (and never ever forget that the system is made up of real live people) over the past dozen years.  Why have I done this?  I wanted to belong.  Attention massaged my fragile ego.  I had a need to be heard.  And yes, I wanted to make a difference.

No more.  I quit you health care.  Except for my minimized touches in a clinical setting – I have had cancer after all, which never really goes away – I’m done.

I’m breaking up with you patient engagement.  You’ve been a rotten partner. You don’t deserve me anyhow. It is finally time for me to take my own heart back.

21 thoughts on “to what end?

  1. Paula MacNeil says:

    Thank you, ❤ I advocate for domestic violence because I have experienced it & I needed to see this! I will be very careful to not give every piece of myself away & I have experience in our health care system as well & I completely agree with you.

  2. genometalk says:

    Tears welling up for you, Sue. Yours is the third very similar story I’ve heard today, this *hour*.
    A genuine thank you for all you’ve done. This is not a platitude because we have to somehow think it HAS made a difference for some people, even if it is a small number of people. Actually, I know it has to folks in our lab. But the burnout is too brutal, pass the torch. -Patricia

  3. Amy Ma says:

    Tears and hugs, Sue. Rob told me to read your latest blog post. I’m glad he did.

    If you feel now’s the time to pass the torch, at least we got to have brunch with you in Montreal before you decided to break up with patient engagement.

    Have comfort in knowing that other parents of kids who have been through the healthcare system look up to you, and you inspire us to move the needle in the right direction, if only ever so slightly. Take care! Let’s keep in touch.

  4. sue robins says:

    I adore your emails where you share information with me. Thank you for this especially kind comment. I loved our brunch together. It was awesome in every way.

  5. Katharina Staub says:

    Dearest Sue,
    You’re passing the torch.
    Your beautiful heart deserves love, care and empathy. These are rarely found in the health care system. Sometimes there are glimmers if hope in individual humans in health care.
    You’ve done enough. It’s enough.
    Love Katharina

  6. sue robins says:

    Katharina, you know me so well. I know you had a similar experience with CPBF so you know how this feels. Thank you for this – reframing the measure of success of our work into individual elements of change as opposed to system change helps. Xo.

  7. Katharina Staub says:

    Individual elements of change, yes. I like that. Your parts have been managed in an excellent way.
    Success is measured in many different ways. A thank you, a return of kindness, financial rewards, but most of all I think success is recognizing when it’s time to move on, to remain humble and true to oneself. Xo

  8. JVA says:

    I will never give up, but I am healthy and not (yet) burned out! You have the right to be tired and step back, you have done so much, time to rest without stopping to give all of us the info we need to keep going. Recently I had a long conversation with the father of a patient who died, a patient advocate if you will. I asked him why he thought all efforts were making so long to have an impact. What I learned was this… one of the biggest obstacles to changes in the health systems is the disinterest in the health system and indifference of those who are healthy. Until they need the health system. That is why we don’t (only) need patients and their family and/or advocates, but every single citizen at the table. In the end, we all are patients at some time, at birth, when we are vaccinated, when we are sick… So far, the system is still much provider- and organization-centered, there is some patient-centered care, and we are eons away from patient engagement. Ultimately, we have to evolve to relationship-centered care. In the meantime, for as long as I am healthy, I will not give up in the little part of my world when I can make a difference. Be well, dear Sue.

  9. Lisa says:

    Oh boy. I’m still too close to the work to say what I’d like to say. Patient engagement unfortunately often is tokenism, exploitive and a check box for many organizations to tick off. I too am done being vulnerable, sharing my deepest feelings and personal stories for the gain of others in the system. I would go so far as to say I will no longer disclose my personal experience in the work setting in healthcare. Too often, I have only been seen as having one skill, experience in the healthcare system. Too often when looking for advancement have I faced the question, “how would that work with your son?” The reality is, I don’t miss work. I don’t call in sick. I juggle my schedule to accommodate both my work and my son often leaving me last. I give 100% to my job and there is no one that can come alongside a caregiver like me, that I know. I’ve felt devalued and not smart. I’ve felt taken advantage of as coworkers make double the salary because I have first hand experience. The system boasts that patient advisors add value but I say, show me the money. I too have had some real crummy experiences as my son granduated to adultland, and don’t kid yourself, it is not related to Disneyland. I try to be the bigger person and think about the bigger picture. I’m done with all of that too. It’s been a long hard go and I too and tired out.

  10. Kevin says:

    Ya know? If after 16 years, all you had to say was that you engaged, and empowered a couple other patient and family advocates? Then I personally would say you could be proud, because that’s a huge accomplishment!! Those PFAs will move on to engage and empower others, and it’s with the ever-larger collective voice, that positive change will eventually occur.

    Every little bit helps.

    But somehow I feel that you personally, may have empowered more than just a few, over that timeframe. 🙂

  11. Bertha Mispireta Garcia says:

    Sue: I am so sorry for you having to do what must be a heart wrenching decision. I have also been in healthcare for decades. 40+years in my case. I have also entered the cancer experience for the last year after 70 years of health and no need for care before. Like you, I feel that much could improve with relatively little investment. I don’t plan to become a public or political patient advocate. What I shall do is to try to make other women with breast cancer experience more manageable. I will create easy to read manuals for this complex and tiring journey. I will try to be there at the chemotherapy suite or radiation waiting rooms. I will drive them to and from treatments. I will listen to their stories. I know is small scale. Probably insignificant, but perhaps it will help at least a few frighten women have a better experience. Thanks for what you have done and do. It did and does make a difference. Hang in there. We need you.

  12. sue robins says:

    Ah, you nailed it, I think – the ‘small scale’ is actually the ‘large scale.’ Every time a woman messages me to say she’s frightened waiting for biopsy results and we connect, this matters. What you are doing is not insignificant – perhaps this is the only way we can truly make change – one person at a time. Thank you for your comment. xo.

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