Eternally’s Modern Approach to End-of-Life Care Planning Takes the Burden Off Doctors and Families

CEO and Founder Matti Burnett witnessed the emotional burden of end-of-life care firsthand. Then, as a consultant, she learned about the associated expenses that often add insult to injury. With her company, she’s making time and space for these sensitive conversations, so that families and doctors know how to provide appropriate care when death approaches.

Challenge

Close to his own passing in 1790, Benjamin Franklin penned the famous line, “In this world, nothing is certain except death and taxes.” Death comes for us all. Yet despite its certainty, the majority of people in the United States refuse to plan for it.

There is a medical standard for documenting how you would like to be cared for in the final stage of your life. It’s called an Advance Care Plan (ACP) or directive. Many people avoid making ACPs because it’s difficult to consider your own death, especially when it feels like a distant future. Physicians hesitate to bring it up, both because of general discomfort with the topic and because they have limited time. The diagnosis-focused nature of modern healthcare means that most conversations about health are about various conditions and how to treat them, not about the patient and what kind of lifestyle will be meaningful to them at the end of life.

When they don’t have an ACP in place, many Americans receive end-of-life care they just don’t want. Loved ones experience a great deal of stress and anxiety when making care decisions on another person’s behalf, and it contributes to the uncertainty faced by nurses and doctors, who often don’t know if they are acting according to a patient’s wishes. And then there’s the fact that the already overburdened healthcare system is about to experience an unprecedented increase in the number of adults over the age of 65.

ACP has been proven to reduce healthcare utilization and costs by helping people avoid unnecessary and unwanted care. Medical bills are one of the top five causes of bankruptcy, and studies show that creating an ACP three months or longer prior to a patient’s death saves the patient and their family thousands of dollars in out-of-pocket costs.

Not that it’s all about money. The cost-savings benefit can concern patients who worry that creating an ACP means they’ll receive less care. But according to the research, people with an ACP were much more likely to be satisfied with their care and in several studies, the result was better health outcomes. A study of lung cancer patients determined that those who received palliative care services because of their ACP had significantly higher quality of life, fewer symptoms of depression, and a 25% longer median survival time, despite receiving less aggressive care.

There’s a disconnect between the benefits an ACP provides — autonomy, better patient experiences, greater physician satisfaction, less anxiety for family members, patient-centered care, cost savings for families and insurance companies, and overall better population health outcomes — and some of the negative emotional responses people have to setting one up. Enter Eternally, a startup that’s flipping the script on advance care planning.

Origin Story

Growing up in South Jersey as the daughter of a home health agency manager, Matti Burnett saw firsthand what a hard time families go through when a loved one’s health declines.

“People were always calling my mom for advice. It’s a stressful, emotional time, and even though it happens to everyone eventually, no one’s prepared for it.”

In her own work as a healthcare management consultant, Burnett got a closer look at the strategic and operational problems that exist in the healthcare system when it comes to aging in America. As she dug deeper into the data, she came across a community doing something radically different for their population: a healthcare system that actually normalized talking about death and dying.

“I saw this model community — the Gundersen Health System in La Crosse, Wisconsin — who made it normal and ordinary to talk to people about what they wanted for themselves at the end of their life. Not just care-wise but in terms of what they value and what makes life meaningful to them. Not only did the health system save hundreds of millions of dollars because everyone had a plan and knew what they wanted for their treatment and care, but the patients felt more cared for and the caregivers felt like what they were doing aligned with their patients’ best interests.”

This idea Gundersen adopted was simple, but as Burnett well knew from research and experience, all too rare. Doctors were hard-pressed to find the time or emotional energy to bring up this conversation with patients. People were willing to get their financial affairs in order, but balked at thinking through their medical affairs, even though end-of-life medical bills often are the cause of enormous financial stress to families.

Burnett realized that people needed a trusted resource to turn to for their end of life planning, a place where they could open up about what mattered most to them and how they wanted to live. They needed a compassionate ear to listen to them who could also talk them through the medical and financial side of care directives and decisions.

As she strategized and planned, Burnett got a close-to-home lesson in the value of having these types of conversations. Her uncle, a concert pianist, fell ill, and because of conversations with him, her family was able to follow his wishes for the end of his life.

“It was tremendously sad, but also beautiful, to see him take control of how he wanted his life to be at the end,” Burnett recalls. “To know he was treated how he wanted to be treated. Compare that to a family who keeps a member on life support for three months, accruing medical bills when that wasn’t even what that person would have wanted.”

Under the Hood

Eternally connects people to personalized answers and solutions to take control of their healthcare. It starts by connecting with a member of the Eternally care team, a clinician like a licensed nurse practitioner, through a secure telehealth platform. Over the course of a guided conversation, the patient and the clinician discuss, decide, and legally document future healthcare wishes. The clinicians have or still work in care settings and have hands-on knowledge about the many different care decisions that might present themselves: hospice care, power of attorney, DNRs, life sustaining treatment measures, palliative care, etc.

“Our nurses are compassionate and take their time,” explains Burnett. “Advance directives get to the idea of ‘what does a meaningful life look like to you?’ Our conversations start there and build out.”

Because Eternally put in the upfront investment to become incorporated as a telehealth company, they can partner with health systems as a medical provider and can receive and share health information, and accept patients through referrals. This enables them to feel like an extension of the patient’s medical team, reducing a person’s resistance to having these harder conversations.

“People don’t want to think about the end of life. But when your doctor or healthcare system says, ‘I need to know this so it can help me treat you in an emergency,’ it’s like getting a prescription. People are willing to follow their doctor’s recommendation on this,” Burnett explains.

She credits this partnership approach to Eternally’s impressive metrics. Using text, email, and phone calls, they engage 70% of patients referred to them, many of whom are older and harder to reach. Of that 70%, their completion rate of the advance directive process is 40%. Compare that to the national average of 3% for hospitals having advance directives on file.

“We recently called a patient, a 72-year-old woman in Wilmington, Delaware, and she said, “If you had not called, I never would have done this.’ It feels so good to help someone take ownership over their own life. Eternally has prepared the patient, her healthcare power of attorney, and her provider to communicate her wishes in the event that she can’t.”

Currently, Eternally is licensed in Delaware, Pennsylvania, New Jersey, and California. They’re fundraising to expand partnerships and broaden their geographic impact. They are also in talks to provide their service not just to patients in hospital systems but as an employee benefit. Eternally also plans to diversify their offerings beyond ACPs to become palliative care providers, creating more value for themselves in the market.

“There’s so much we can offer to individuals and to aging communities and their families. Creating a plan for your health really is an act of love for the people in your life. Our name reflects that — they’ll be eternally grateful you did this for them, and you’ll be glad you did it for yourself.”

Why We’re Proud to Invest

StartUp Health is eager to welcome Eternally to its portfolio because of the way it is tackling an issue that affects every single person — end-of-life care — with sensitivity, knowledge, and big-picture thinking. They’ve already done the heavy lifting to become a telehealth company, a hurdle which creates a moat around them in the industry, and makes it easy to partner with hospital systems and healthcare organizations. They made this move early in their company’s life cycle, proving they can adapt and shift gears when necessary.

Eternally also removed barriers to partnership by not requiring health systems to build anything new or learn new apps or technology. There’s no implementation required; doctors need only refer existing patients and Eternally’s team takes it from there. Because of this ease of adoption, they’ve been able to move from initial conversations to signing a contract with hospitals in the span of approximately six months.

Finally, there’s the simple fact of the magnitude of the addressable market. The billing code that exists for ACPs is utilized only 2% of the time. That means 98% of the population needs what Eternally offers: a simple, clear, legal way to take control of their healthcare in the event they cannot speak for themselves. They need Eternally’s trained clinicians who can answer their questions and explain their options. They need to consider the costs and outcomes of various interventions and their effect on them and their families — not only financially, but in terms of what is meaningful to them for how they live.

We’re proud of the way Eternally is tackling these hard conversations and proud to welcome them to the StartUp Health community!

Learn more and connect with the Eternally team.

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Eternally’s Modern Approach to End-of-Life Care Planning Takes the Burden Off Doctors and Families was originally published in StartUp Health on Medium, where people are continuing the conversation by highlighting and responding to this story.

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