He’s made the decision public. Well .. not PUBLIC but M called me last night on speakerphone with mom and dad. He wants it to be clear. He asked me if I wanted it in writing and I said “no.”
“If I get a headache or something, of course I’ll take an aspirin or tylenol … but if I get an infection or high calcium or anything else that might take me to the end, I don’t want it treated.” His advance directives essentially say this, but there are nuances in the advance directives that leave some options open. He’s using MyDirectives.com to maintain and manage his advance directives (me too – and so should you – it’s free and easy).
We set up the advance directives about six months ago. That was about nine months from his diagnosis. I was surprised that his physicians didn’t encourage him to do this – but none of them even mentioned it. So I did. And again. And again. Finally, I sat down with both mom and dad and helped them do it. Took about 10 minutes with MyDirectives and dad was so happy to have it done.
When he went to get the stent placed @ UCSF in early July, he waved his iPhone at the admissions clerk and offered her his directives to be put in the chart. She looked at him like he had three heads. He offered to e-mail it to her and she refused – citing HIPAA. (Yes – this is silly – HIPAA certainly doesn’t prevent her from accepting an e-mail, but this is what she’s been told by her manager and we weren’t going to re-educate her.) It’s 2015 and there is no way to get the PDF from his phone into the Epic EHR! Dad got frustrated. He really wanted to be sure that the directives were in the chart. He didn’t want to end up in the ICU if something went amiss. Fortunately, I had my laptop, which had a .pdf version of dad’s directives on it, and UCSF does have free wifi for patients and families. Using an e-fax account, I faxed the document to the admissions clerk, who then scanned it into his record. Sigh. Interoperability? Not yet. 10 minutes later, from digital to analog to paper and back to digital, the directives were in the EHR.
The next day, I e-mailed a colleague at MyDirectives and suggested they add a “fax” feature. Unfortunately, this is probably a necessary feature for another few years.
After learning the hard way about the importance of advance directives, I made sure to fill one out for myself. I had a conversation with my family about my choices as a single 30something and healthy and encourage my friends and family to do the same.
Thanks for sharing your story – always bring backup, right?
It’s amazing that the technology for collecting and managing this information from individuals can be so advanced, but the means available for sharing the information with care providers is so rudimentary. At least we’re making progress in the right direction. Making the communication tools that help consumers communicate their healthcare choices will eventual lead to new ways of sharing this critical perspective.
I had a similarly good experience using MyDirectives.com to record my Dad’s and my Mom’s care goals, preferences, and priorities. As a daughter, it makes me feel better knowing that my parents have documented their thoughts and wishes. As their health agent, it makes it possible for me to know I am making choices that are consistent with what they wanted.
I’ve talked about this with several of my girlfriends who are also dealing with aging parents. We’re realizing we really need to document our healthcare directives too. There’s all sorts of emergency situations, critical accidents, and unfortunate illnesses that make it just as important at our age as at our parent’s age.
A couple of my girlfriends are single with no kids. They’ve created directives for themselves using MyDirectives.com and they’ve asked me to be their healthcare agent. My sister has asked me to be an alternate healthcare agent in case anything happened and her husband, the primary healthcare agent, wasn’t in a position to help with her care planning choices. We all agreed it is very important to pick someone you know really understands how you feel about your care goals and priorities–someone you trust to honor your wishes if you need that person to help make healthcare decisions.
MyDirectives.com has made it easy for us to document our directives. It also makes it easy for us to keep our selected healthcare agents informed when anything about the plan changes. I feel better about accepting this responsibility because I’m always up to date on what these relatives and close friends have indicated are their wishes.