App helps doctors execute end-of-life decisions

By Rosie Lombardi

Jamie ShaferDoctors are often caught in the crossfire when warring family members can’t decide what medical treatment is best for loved ones who can’t communicate or make decisions due to coma, dementia or other disability. A new app released this year by a startup based in Vancouver can address that scenario. Called My Own Voice, the app allows users to video their end-of-life wishes in advance, and upload the file into a cloud server so it can be easily retrieved by family members later when it’s needed. The app offers nine broad questions users need to address in their videos, and sample answers to help them compose their responses.

People don’t like talking about death with their families, says co-founder Jamie Shafer (pictured), a semi-retired developer. “So we decided to utilize technology to convey their end-of-life wishes. We wanted to keep it simple and confine our videos to key questions that could be answered in a conversational style.”

The questions were developed in consultation with medical professionals and culled from guides provided by healthcare authorities, says Shafer. The team distilled all the content down to nine fundamental questions. “There’s a guide provided by B.C.’s provincial authority that’s very popular with seniors – but it’s 42 pages long.”

My Own Voice tackles a problem inherent in many such end-of-life guides on paper or computer file: they can’t be found when the time comes, says Shafer. “A lot of worried people fill out a Do Not Resuscitate (DNR) order, and they’ll put it on their refrigerator, hoping that the medics will see it when they’re lying on the floor.”

Instead, the My Own Voice app allows users to create a file and store it on a cloud-based server for a $5.99 annual fee so their instructions are always available. Once the completed video file is uploaded, the user invites individuals (e.g. spouse, children, family doctor, etc.) to view it through password protected access that they control. At present, the app will run only on iPads and iPhones, but the team plans to release Android and Web versions so that virtually any device with a video camera can be used. The download is free so people are encouraged to check out the app.

The app provides a video guide that steps users through the process. People don’t have to respond to the nine questions sequentially, nor do they have to answer all nine questions if they feel some of them aren’t relevant.

“When they have the answer formulated in their minds, they push the record button. It records their response, they push the stop button, and that little chunk of file gets stored. If people need more time to contemplate, say question 2 and 3, they can skip over them. And they can rerecord an answer as many times as they want until they are completely satisfied with their response. Once they’re finished, the app stitches all the chunks into one sequential file.”

It’s impossible to anticipate every possible medical scenario, so most of the questions stick to basics. “The most important one is identifying your primary decision maker: that person you want to designate to make decisions on their behalf. Other questions help the user identify what makes life meaningful for him or her, and under what circumstances he or she would want their family members to go to heroic measures to extend their life – if at all.”

The video isn’t intended to be a binding legal document that would be held up in court in the rare instances it were to be challenged. Rather, it’s meant to give family members and loved ones the understanding, guidance and courage to make the right decisions on someone’s behalf.

That said, Shafer says there are plans to add a signed document that can be downloaded from the video in the next release of the app that declares who the decision-maker is. “This is what the doctors, the hospitals, and the lawyers are actually looking for because a signed document fits in with current administrative conventions.”

For more information, visit http://www.usemyownvoice.com.

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