Time and again, in comments on this blog, on Twitter, by professionals, by people who both know me and don’t, I’m asked why I can’t just work. I’m told, “You’re so smart, you surely can work.” Or, as I’ve written about in the past, “But you have your law degree!” I’m tired of defending myself from these assertions – some perhaps well meaning but most coming with deep judgment and scorn. So I think it’s time to provide some information on disability.
Anger in healthcare is often justified though usually disparaged. It is an emotion that is considered “negative” and “uncivil.” In a culture still stuck on positivity and “choosing to be happy” it’s an emotion that is shunned. People turn away from anger, afraid or disgusted by this unruly emotion. But perhaps we should turn into anger if we really want to change healthcare.
Anger is rightfully feared. Anger can lead to rage. Anger can hurt others. Anger can destroy.
Anger is often suppressed held in until it boils over, erupting and affecting everyone in its wake.
Anger is not pretty. Anger is hard to confront – no one wants to look directly at it.
Yet anger, like any emotion, needs to be expressed. Anger is real and valid just as sadness or happiness.
It is okay to be angry.
The excitement is palpable on conference floors with each booth touting the latest in innovation and the possibility of change, of making a real impact on healthcare abound. Companies angle for a good spot on in the expo hall, hoping that potential clients will walk by to listen to their pitch and find ways to connect and collaborate. Cards are exchanged and a new piece of swag is offered as conference goes go booth to booth.
Conference swag – everyone has something. Pens, stress balls, tshirts, bags, water bottles, notepads. The list goes on. Suitcases become overfull with all of these items collected, they are de rigueure . But do they really change healthcare? Do they really serve the company or the conference goer?
I think it’s time to change swag culture at conferences. It’s time to shake up the status quo and do something that can actually make a direct and meaningful impact on healthcare. It’s time to make healthcare conferences about the people not at the conferences, instead of the people lucky enough to be there. It’s time to give back instead of give away.
I have had many a terse conversation with doctors about the sacrifices they make to medicine – all they give to take care of patients. I recognize and respect their sacrifices, sacrifices of time, energy, mental health. The suicide rates for doctors is a crisis in itself as highlighted in this recent post in the Washington Post – “What I’ve learned from my tally of 757 doctor suicides.” The effects of the sacrifices that doctors make to the profession are real, but they aren’t the only ones who sacrifice.
There are ripple effects.
There are consequences for those immersed in medicine, surrounded by it. For those of us who are not doctors whose lives are intricately linked to this profession that can both hurt and heal in the most profound ways.
When I have these discussions with doctors, they have no idea what I’ve sacrificed. I haven’t been able to talk about it before in more than obscure references. But now I can and I think what I have might be worth saying both to understand my advocacy better and perhaps, even more importantly, help doctors gain another view of medicine – one that holds compassion for their lives and also asks for acknowledgment of ours.
I just posted my Personal Health Record (PHR) Template. I bring in a PHR for my doctors to have my health history but I realized I also needed to bring in a one-pager to really focus on the issues I’m presenting with. I just started using this format but am finding it really helpful. I’ve posted below the primer I took to my foot surgeon yesterday (I have removed some personal information). With this document in hand, we are able to really get down to the issues at hand.
The first side of the page is the important issue for the appointment. But I put more on the back side – the things that help a provider see me as a whole person. I have my coordination of care notes but more importantly, I put a “brag list” or a list of things that are good in my life – the things that I want a provider to know about me as a person – not a patient. I want to give them a sense of why I’m there. It’s not just about the pain, but about what I want to get back to doing and living a fuller life.
I need to use email to work with my providers. I’ve explained before why I’ve given up on patient portals. Basically, I have multiple providers to manage (16) and going into multiple portals to send multiple messages is untenable for me as a patient and really does a disservice to me and to my providers. However, doctors are reticent to use email. The EHR vendors have done a great job with their marketing to scare physicians to think that they can only use the portal to communicate. But that’s not true! And in fact, patients have a right to use email, one that doctors must accommodate.
Because doctors don’t want to believe me despite my law degree, I have written this letter and present it when they try to resist the use of email. Some still try to push back and refuse, but the law is in my favor and I’ll push for what I need to do for my care. We shouldn’t have to fight over this, but until doctors really learn how HIPAA works, I’ll have to educate them on my own.
For all patients that want to use email, feel free to use this. It is NOT legal advice, it is simply what I use as a patient and cites the relevant laws, rules, regulations, and guidelines.