New app gives a voice to patients at the end of life
Your 87-year-old father is lying in a hospital bed, breathing with the help of a ventilator, and the doctor say he’s unlikely to recover. Your sister insists on doing everything possible to keep him alive. You’re sure Dad wouldn’t want that.
Can an iPhone app developed in Vancouver settle the argument? Jamie Shafer, a self-described serial entrepreneur, says his app My Own Voice was created with this scenario in mind.
“The inability of the patient to articulate what he or she wants to have done leads to dysfunction within the family and it leads to misdirection on the part of the medical staff in the absence of specific instructions,” Shafer says.
People want to make their views known, but existing options are all written documents and might not be immediately available to family if they don’t know where to look.
That’s why he and his partners have spent the past two years finetuning My Own Voice — now in Apple’s app store — which walks users through nine questions about hopes for their final days.
They’re prompted to record each answer on video outlining who they’d like to represent them if they can no longer communicate, for instance, their opinions on lifeextending measures.
“Yes, this is a morbid topic of conversation, but we’ve yet to find anybody who’s escaped it,” he says.
Shafer got the idea after hearing that a similarly named advanced care planning guide published by the B.C. government — My Voice — was wildly popular. Shafer says the advantage of the My Own Voice app is that it can be shared online with family, a lawyer or doctor rather than tucked in a filing cabinet.
Darren Kopetsky, director of client relations at Vancouver Coastal Health, says a video of a patient’s wishes could be a valuable guide for relatives who must speak on behalf of their loved one. And it would also assist hospital staff to ensure the family is following the patient’s instructions.
“It really brings it to life more so than a document,” Kopetsky says. “And because substitute decision makers are obligated to make decisions as the adult (patient) would have, it’s very helpful for the health-care team to essentially hold the decision maker accountable.”
The intention isn’t to create a document that will stand up to legal challenge, Shafer says, but to help people through some soul searching.
“It’s uncomfortable for many, so we’ve tried to take the discomfort out by talking to a phone or an iPad,” Shafer says.
He says his research shows most people say it’s important to discuss end-of-life matters, but don’t follow through.
“There’s a huge desire — 90 per cent — but practically, only 30 per cent of us have done anything about it,” he says.
Vancouver lawyer Hugh McLellan, who has specialized in elder law since 1982, says the fact My Own Voice has no legal standing means it could be ignored in the event of a family fight. He says a better choice is to have written instructions that conform to provincial law and a video as backup.
“It’s great that people have another tool to express their wishes, but my concern would be they might think that’s enough. They really need to do a representation agreement and or an advance directive in British Columbia in order for this to be effective,” McLellan says.
My Own Voice (usemyownvoice.com) can only be used on iPhones and iPads, but an Android version is in the works. It’s free to download and costs $5 a year to store the associated video.