Well is it dark enough?
Can you see me?
-My Skin by Natalie Merchant
Moral injury, distress and burn-out does not only happen to paid health professionals. It happens to patient (and caregiver) advocates too.
The difference is that nobody conducts research or writes journal articles about it.
I recently read a paper called Moral Distress, Mattering, and Secondary Traumatic Stress in Provider Burnout: A Call for Moral Community by Elizabeth G. Epstein, Julie Haizlip, Joan Liaschenko, David Zhao, Rachel Bennett and Mary Faith Marshall in the Advanced Critical Care Nursing Journal.
It was written for nurses, but it spoke to me. It was chilling to recognize myself and my advocacy colleagues in the paper.
I’m sharing the authors’ concepts in hopes that it will give words and structure to what you might be feeling. Advocacy work is terribly lonely, and we need our own communities to lean on. We don’t have a staff room or reflective practice sessions to debrief. Most of us have been harmed in health care at point of care, and we bring along the heavy baggage of that harm when we speak up.
The authors provide clear definitions of terms related to burnout. I’ve added my comments in italics.
Mattering – “the perception that one makes a difference in the lives of others and is somehow significant in the world.”
How often do advocates get evidence that their work and their stories have actually made a difference?
Moral Distress – “when clinicians are constrained from taking what they believe to be ethically appropriate actions or are forced to take actions they believe are ethically inappropriate.”
In my experience, moral distress is common in patients who work on behalf of health organizations and are facilitating patient engagement as either staff or contractors.
Secondary Traumatic Stress (STS) – “describes the psychological experience of caring for traumatized or suffering others.”
My own patient community is filled with families whose children have died, patients who have a new diagnosis of cancer or those whose cancer has metastasized, people who have died by suicide and many many folks who are currently suffering at the hands of the health care system. There would be something wrong if this immense grief and loss did not effect me.
The paper states that it is health organizations’ fundamental obligation “to mitigate and prevent the costs of caring (eg, moral distress, secondary traumatic stress) and to foster a sense of mattering”.
I’d argue that if organizations are engaging patients, it is their fundamental obligation to provide support to the people they are engaging. Too often the opposite happens and patients being engaged are harmed instead of being treated tenderly.
The authors suggest the solution is to create moral communities, which are “groups of people united by a common moral purpose to promote the well-being of others.” Again, creating moral communities is the fundamental obligation of the organizations doing patient engagement. Does this happen? Rarely.
Where are the advocate’s moral communities? If you are lucky enough to have a colleague who is a friend, you can lean on each other. If not. you are left to crumble by yourself. The significant thing patient advocates are missing is a sense of belonging to something bigger than them. Many of us are floating around on our own.
I struggle with these issues and so I cannot offer solutions. This article from the US Department of Health and Human Services has ideas for health care workers that can be applied to patient advocates. I’m a bit reluctant to share it because it talks about the tired ‘individual blaming’ strategies (e.g. be more resilient), as opposed to organizational responsibility and the need for system change, but if you are feeling worn down, it is good to know there are some things that are within your control:
1. “Learn to recognize the signs of distress, mental health challenges, and burnout in yourself and in your colleagues.
2. Stay connected and reach out for help.
3. Prioritize moments of joy and connection.
4. Get back to basics with good health habits.
5. Use your voice to advocate for positive changes in your workplace, learning environment, or communities.”
I promise to keep banging on my drum with #5, sharing best practice with organizations to support patients to prevent advocate burnout in the first place. Also, this essay is an effort to address #1 – to talk about the issue of advocate burnout, to give it structure and words so you know you aren’t alone.
I’ll add specifically for advocates: You can say no. You can withdraw from commitments. You can pass the baton and leave engagement opportunities. Here’s permission if you need it: You can resign from your advocacy role entirely. It is not your responsibility to save the health care world. Sometimes we can only save ourselves.
There are some rays of hope. A few organizations have popped up grassroots support groups for patient advocates:
I have also found comfort in the ACT philosophy, specifically with these ACT for Caregiver Groups, which teach acceptance and commitment therapy to parents who have adult children with intellectual disabilities.
Two books that have been helped me understand myself as an advocate:
Damaged by Bob Maunder and Jon Hunter explains the trauma that many patients bring into health care settings.
The Wounded Storyteller by Arthur Frank speaks eloquently about the patient storyteller perspective.
Finally, if you want to read more about advocate burnout:
Lisa Machado wrote a brilliant piece about the reasons why patient advocates burn out.
I’ve written about advocate burnout before:
Know that you have value and worth. Do your best to only share your story in safe spaces. Be careful out there. The patient advocacy world can be competitive and not all fellow advocates are friendly. And as you know well, health care is hostile to people like us who question the status quo.
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