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Summary:

End-of-life care may not be the most uplifting topic, but a group of startups see their tools as a way to help people take control of their circumstances and make sure their voices are heard.

patient hands
photo: racorn

The world of technology, particularly medical technology, tends to be consumed with making us superhuman. It wants to enhance our abilities and prolong our lives, if not enable us to live forever. But new innovations give rise to new and tough choices, and a small but growing group of startups sees it as their mission to use technology, not to extend life, but to help people make and document some of the most difficult decisions regarding the end of it.

The story of a patient from her days as a student at the Mount Sinai School of Medicine particularly haunts Azalea Kim, co-founder of the startup TrueNorth. A 60-year-old woman, who had terminal cancer, came to the emergency room one weekend evening in dire condition. Because of a complicated family situation, Kim said, she arrived alone, without any family member to serve as an advocate and describe the kind of care she would want.

Although her medical record was overflowing with documentation, the doctors were unable to locate a health care proxy form that could also have provided guidance on the kind of procedures the woman would – and wouldn’t – have wanted in her final days. So, Kim explained, the doctors slipped into default mode, administering intravenous therapy, sending her to a radiologist, considering a surgical intervention and providing all kinds of aggressive and potentially unwanted care.

“At end of the 48 hours, she passed away,” Kim said. “And you have to wonder, is this really the way someone wanted to spend her last days of life?”

Paper documents often get lost or forgotten

Partly motivated by that experience, Kim and two Harvard Business School classmates, Margaret Terry and Amy Flaster, launched TrueNorth. A recent graduate of the Healthbox startup accelerator in Boston, TrueNorth provides a free online service for patients to record their legal healthcare proxy (or power of attorney) and then share it with loved ones and healthcare providers.

The goal, the founders said, is for TrueNorth to encourage patients to tackle difficult end-of-life decisions and ultimately integrate with electronic medical record systems to make these forms available in the health and emergency contexts in which they’re needed.

A planning tool on MyDirectives prompts patients to indicate their preferences and values related to end-of-life care.

A planning tool on MyDirectives prompts patients to indicate their preferences and values related to end-of-life care.

And it’s one of a handful of relatively new startups trying to use technology to help patients think through and share their end of life decisions. For example, along with TrueNorth, the Dallas-based MyDirectives exclusively offers support around health-related decisions, while startups Everplans and AfterSteps focus on medical planning services, along with a wider range of financial and legacy planning options.

According to Kim, just 25 percent of patients have documented a health care proxy or living will. And, other estimates indicate that even when a document exists, it can’t be located 35 percent of the time. These companies say their digital tools help ensure that patients’ voices are heard when they’re at their most vulnerable or can no longer speak for themselves.

For example, they can walk patients through their end-of-life prioritizes, enabling them to indicate that they most value being free from pain or not being a burden to their families. They also let patients specify the circumstances in which they’d want life-sustaining treatment, like heart machines and dialysis.

A tool for the growing group of U.S. caregivers

And their rise makes sense given the growth of the so-called “longevity economy” of services for the aging Baby Boomer demographic, increasing awareness among patients that they need to be more proactive about their health and the digitization of healthcare — not to mention major advances in medical technology.

“As medicine’s ability to prolong life increases, it does raise questions that years ago were not there to be asked,” said Harvey Freishstat, director of The Conversation Project, a new non-profit founded by journalist Ellen Goodman tasked with raising awareness around end-of-life decisions. “And, as more and more people take charge of their healthcare, this is one component of that.”

health spendingAs a study from the Pew Internet & American Life pointed out earlier this month, nearly 40 percent of American adults are caring for another adult or child with a serious illness. And, a big chunk of those adults are part of the workforce. According to MyDirectives, caregiving-related expenses cost employers $17 to $33 billion a year in lost productivity (canceled meetings, delayed product launches, etc.) and an additional $11 billion in healthcare costs because caregivers suffer from stress, depression and other conditions.

For end-of-life care companies, that means there’s an opportunity in targeting employers with a service that lets them improve care for their employees while hopefully contributing to productivity. For health plans, the pitch is that these services could help them attract and retain customers. And, in an era of rising healthcare costs, these services could also reduce the number of unwanted and often expensive procedures – an amount some experts peg at $6 billion a year.

Changing the conversation

That this topic isn’t exactly uplifting is not lost on these companies – Jeff Zucker, co-founder and CEO of MyDirectives acknowledged that many people don’t realize the ramifications of not having end-of-life documentation or just don’t want to deal with it. But he said his hope is that his company, which started its work in 2007 and launched its service last year, can help people think of end-of-life planning as a way to take control of their circumstances, minimize suffering and honor a person’s life.

“Society is aging and, in our private lives, we’re beginning to reach those demographics where we’re taking care of a partner or grandparent or coworker. And we’re starting to see questions and confusions [and the recognition that] this could be me too,” he said. “Technology and social media have caused people to become more proactive in all different parts of their lives… they want a voice in this area of their lives too.”

Image by racorn via Shutterstock.

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  1. A very useful post on end of life decisions. Thank you.

  2. A very useful post on end of life decisions. Thank you.

  3. Very helpful post.

    I’d also like to include AfterSteps (http://www.aftersteps.com) as another online service that helps you “get your affairs in order.”

  4. Tyler Hayes Sunday, June 30, 2013

    Does TrueNorth have an actual product available on the market right now? Plenty of nice problem statements on their site, but no screenshots or descriptions of the actual product. I’m unclear as to whether it’s something I could proactively use as a patient vs. something a doctor would advise me to use.

  5. Tyler Hayes Sunday, June 30, 2013

    Does TrueNorth have an actual product available on the market right now? Plenty of nice problem statements on their site, but no screenshots or descriptions of the actual product. I’m unclear as to whether it’s something I could proactively use as a patient vs. something a doctor would advise me to use.

  6. Jose Suay Orenga Sunday, June 30, 2013

    Very helpful post.

    Center for reproductive medicine (Spain)
    http://www.vitafertilidad.com/en/

  7. I can’t help but wonder if there isn’t a gray area that medical staff would consider intrusive or extreme and a family member would have considered it to be an option that may have extended the life of a loved one.

  8. Blaine Warkentine MD MPH Monday, July 8, 2013
  9. joan justice Tuesday, July 9, 2013

    Hello Ki Mae,
    I am the manager of HealthWorks Collective, the healthcare website in the Social Media Today network. I would love to repost this article for our readers. We have a series on Health Start-Ups and I think this would be a great addition. I would create a profile for you on our site and credit you as author, and would also link the post back to the original on gigacom. Please let me know if this is OK.
    Thanks so much,
    joan justice
    joan[at]socialmediatoday[dot]com

  10. TheCyberPsyche Tuesday, August 13, 2013

    Another great use of technology – I was not aware of these end of life apps/software but they seem like they would be incredibly useful (providing all health care providers would have easy access to them, of course!).

    Interesting stuff! Thank you for sharing :)

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