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.