I have spent significant time thinking, writing, and talking about trust in healthcare, primarily the lack of it between patients and non-patient stakeholders. The lack of trust within the healthcare system affects nearly every patient-facing aspect of the system, and it sits at the crossroads of a bulk of the roadblocks to improved outcomes.
The nuts and bolts of it is that patients do not believe non-patient stakeholders – whether we are talking about researchers, hospitals, or clinicians themselves – have patients’ best interests at heart. Experience has taught them that, and they are not so open to adjusting their hard-won point of view, no matter how well meaning the next person they encounter might be. Fair or not, those who want to (re)build trust in healthcare are going to pay for the mistakes of those who came before. It’s going to take a lot of proof in a lot of pudding.
In my own discussions, colleagues and I have addressed the causes of the problem, and what needs to happen to begin bringing patients together with the other stakeholders. I have seen instructional guides, webinars, and tool kits that can supposedly be used to start acting.
I can tell you right now, it won’t be enough.
Being a good listener, staying open minded, empathy, sympathy, and all the rest of the building trust buzzwords are great places to start. But unless they have lived it, I am not sure non-patient stakeholders really understand the depth of damage that has been done to the patient (and caregiver) psyche.
It really is the old adage about fool me once, shame on you, fool me twice…or three…or a hundred times, shame on me. And with each time, the hole the healthcare system digs gets another six feet deeper. We are going to need a bigger ladder.
So, what will be enough?
Investment.
Not time. Not money. Not resources.
It’s going to take investment of self.
If stakeholders want the progress and improved outcomes that will come with a trust-based system, they are going to have to demonstrate that they see patients as people first, people whose jobs, family, mobility, their lives depend on these stakeholders. As of now, we haven’t seen it. A person or a practice here and there, maybe. But trustworthy healthcare partners are the exception, not the rule. *
Yes, of course there will need to be boundaries. No one needs to invest so much they are swallowed by their jobs. But for patients, it is always personal. So, make it personal:
SEE ME.
See how your actions, your policies, hurt me, my husband, my wife, my mom, my dad, my kid.
Work with me to find a way not to hurt me.
Show me you understand what I am trying to say.
Teach me what I need to know, even if you have to repeat it a thousand times.
Give me every choice you can, every opportunity to employ my own autonomy.
Make me understand what is and isn’t possible and why.
HELP ME, not how you think I need to be helped, but how I tell you I need to be helped.
It’s a lot to ask.
It’s not the clean, business-oriented process the industry is looking for. But it will get the results the industry is looking for.
If they are only willing to invest a little but more.
* With the exception of clinicians who have invested so much, they are burning out. We need to find solutions for them too. Because we want the ones who are vulnerable to burnout. They’re the ones who care the most.