How digital health innovators are changing the status quo for end-of-life planning

By Stephanie Nieman
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About the author: Stephanie Nieman is a Principal at SJF Ventures based in Durham, NC. SJF Ventures is a venture capital fund investing in high growth, positive impact companies across the U.S. and an active health care investor.
 
Benjamin Franklin famously wrote that “nothing can be said to be certain, except death and taxes.” And yet the inherent optimism of human nature causes us to avoid talking about the inescapable truth of death. Studies have repeatedly shown that while we widely recognize the value in end-of-life consideration and planning, we do not take much, if any, action to ensure personal desires will one day happen.

A 2013 national survey found 90 percent of Americans believe it is important to have end-of-life care discussions with their families, yet fewer than 30 percent had actually done it. Another 2014 study reported only 26 percent of Americans surveyed had completed an advanced directive, like a living will -or other legal documentation of one’s end-of-life wishes. Another study confirmed again that while 63 percent felt it was very important to communicate their funeral wishes to family members prior to death, just 21 percent had done so.

And since we are not taking action in either family conversations or legal documentation, individual wishes are not being realized. Seventy percent of Americans state they would prefer to die at home, although only 25 percent actually do.  

In addition to the gap of unmet patient wishes, unnecessary end-of-life care also comes at a high financial cost. The United States spent $646 billion on Medicare in 2015, and it is estimated 28 percent of that was spent on patients’ last six months of life. Patients also pay high healthcare costs at the end of life; a Mount Sinai School of Medicine study found average out-of-pocket expenses for Medicare recipients during the five years before their death were around $39,000 for individuals and $51,000 for couples where one spouse died. Twenty-five percent had bills exceeding their total household assets, and 43 percent exceeded their non-housing assets.

But when terminally ill patients choose to remain at home, focus on palliative and/or hospice care, and avoid unnecessary treatments, patients and families have demonstrated higher satisfaction and patients have shown to live longer.  Some health care providers and payers are seeking to better meet patient wishes and reduce unnecessary end-of-life care costs with advance care planning (ACP) programs where clinicians and/or social workers actively engage patients to consider all options and document their preferences.  Examples include Gundersen’s Respecting Choices program in Wisconsin and Sutter Health’s Advanced Illness Management (AIM) program in northern California for patients with late-stage chronic illnesses. Gundersen’s program has demonstrated 7.2 fewer days in the hospital and $23,000 in cost savings per patient versus the national average in the last two years of life with a 25 percent increase in length of life for its patients.

There are also national advocacy efforts around end-of-life planning to help educate Americans on the need for personal decision-making, family communications, and legal documentation. Examples of great nonprofit resources include The Conversation Project, DeathWise, and ACP Decisions.

Digital health solutions to scale these types of advance care planning services and end-of-life preparation programs are newer to market than their counterpart population health and chronic disease management startups. They also face greater obstacles to adoption as they must overcome the highlighted human psychological barriers embedded in end-of-life planning. 

That said, I’m bullish on market opportunities for models that can build patient trust quickly, utilize experienced professionals with expertise in conducting these difficult conversations, engage families in patient decision-making, help patients document and communicate their wishes with healthcare providers (both primary and acute care), and ultimately demonstrate higher patient and family satisfaction alongside lower costs of care.

Below highlights 11 digital end-of-life companies, each coming at the challenge in a distinct way. One group of players is aligning more with healthcare payers and providers (who have the greatest financial incentive to engage patients) and focusing on severely ill patient populations, and another group of companies has set out to directly engage individuals and families, casting a broader net and trying to elevate the general population awareness level of end-of-life planning.

B2B Advanced Care Planning Outsourced Solutions

These models generally sell their technology-enhanced services to at-risk providers, health plans, and payers and engage patients, often those identified as severely ill, on their behalf.

Winners must:

·       Engage patients on a very difficult, disliked topic (one's mortality), and at a time when they may be trying to fight a severe illness. Furthermore, patients may wrongly akin the idea of ACP with “admitting defeat” in their own minds.
·       Also engage families because without family buy-in, advanced directives may not be effective anyway. These are also very difficult conversations to have, and it can be tricky to coordinate communication with both patient and family.
·       Secure multiple signed patient documentation that is distributed to primary care physicians, labeled for emergency professionals in the home, presented in emergency health settings, and recorded in EMRs.  
·       Build patient trust in order to ever begin the conversation. Doctors are typically the most trusted partners for these conversations yet doctors do not have the time, strong incentives, or the training to engage in them. Other players, especially payers, are not generally as trusted by patients. 
·       Execute in a personal touch environment that can be affordably scaled. End of life conversations are probably best held in in-person settings, yet these may not be scalable so any virtual care or remote communications must be carefully planned.
·       Be patient-centric, not cost-centric. Patients think of end-of-life planning comprehensively (i.e. include health care, death, funeral, estate planning decisions altogether) while health plans only consider the care decisions and costs. Successful models will likely serve all patient and family planning needs.
 
Players: 

Copilots in Care was an end-of-life care company that unfortunately proved unable to successfully scale. It attempted a model whereby payers paid for severely ill patient outreach that was initially engaged remotely, and then the company delivered end of life discussions through in-person social worker visits to patient homes. Copilots in Care shut down in 2016.

Emmi Solutions (a Wolters Kluwer company) is a patient engagement platform offering online, interactive multimedia programs, and interactive voice response (IVR) calls to help patients across the continuum of care, from prevention to treatment to follow-up, and includes advance care planning as one of its services. Emmi was acquired by Wolters Kluwer for $170 million in 2016.
 
Iris Plans is a telemedicine model sold to payers and providers to first identify patients who would likely benefit most from advance care planning, set up video-based conversations with patients, and provide disease-specific education tools to help patients navigate multiple care decisions specific to their condition. Iris Plans raised $1 million led by Better Ventures in 2016.
 
Vital Decisions is one of the first providers of dedicated healthcare planning and end-of-life decision-making services.  It utilizes a largely telephonic communication model for experienced social workers to call and discuss care options with terminally ill patients on behalf of health plans and payers. Vital Decisions was acquired by MTS Health Investors in 2012.
 
Vynca focuses on healthcare providers and offers a technology solution to share end of life care plans across multiple healthcare providers. It uses the Physician Orders for Life-Sustaining Treatment (POLST) paradigm that ensures a patients’ wishes are actually carried out. POLST is being rolled out in 43 states, but in almost 90 percent of cases the paper POLST forms are not available at the scene of an emergency, so Vynca provides a technology solution to digitize the forms and integrate them into healthcare providers’ workflow.  Vynca raised $4.9 million from angel investors in 2015.
 
WiserCare is a patient clinical decision support information technology paid for by hospitals and health systems to enable smarter, faster, and more effective medical decisions. It has raised $5.8 million from several groups to date.
 
D2C End-of-Life Planning and Record-keeping

These models acquire individual users directly, usually online, and provide comprehensive end-of-life, funeral, and estate planning education, documentation, storage and/or sharing tools either for free to users or for a small fee.  The companies sometimes monetize through various types of distribution partners who sponsor the digital tools as a benefit to their employees, members, or other beneficiaries.

Winners must:

·       Reach and engage a general population of users on the disliked topic of end-of-life planning no matter what their current life stage or health outlook (which is even more challenging.)
·       Acquire these users at a very low cost.
·       Educate on options and deliver documentation tools in a very efficient, low-cost, and likely all digital manner as there is not necessarily a payer/provider customer to pay for 1:1 patient engagement and personalized discussions for this general population.
·       Provide ways to store documents for many years until needed and to share the documents with family members.
·       Secure multiple signed patient documentation of advanced directives that is distributed to primary care physicians and recorded in EMRs.
·       Efficiently cover all personal planning decisions at one time without overwhelming users who may have never even considered these decisions before.
 
Players:

Cake is an online platform that enables users to express their last wishes and thoughts and helps them to discover, store, and share their end-of-life preferences. Targeting the general population, Cake guides users on making decisions for all aspects of one’s end-of-life plans (health, assets, legal, funeral, etc.). It has worked with employers and health plans to reach their employees and patient populations.  Cake raised an undisclosed amount of capital from Bantam Group and Nautilus Ventures in 2016.
 
Everplans is an online platform for funeral and end-of-life planning. The company provides a platform enabling users to create profiles outlining their end-of-life wishes, living wills, healthcare proxies, financial information, legal documents, bank information and key personal information, which they can share with those people charged with carrying out their wishes. Everplans has raised $12.6 million to date, most recently its Series A was led by Mousse Partners in 2016.
 
Grace started off as an online concierge service for finding funerals and end-of-life care but has since pivoted, and Grace is now a marketplace for finding hospice care alongside providing patient and family education on the benefits of hospice care. Grace raised $800K in 2016.
 
MyDirectives (by ADVault) is a completely digital emergency, critical, and advance care planning service that is secure, easy to understand, and free for consumers to use. Apple iPhone users can also download the MyDirectives app for free in the Apple App Store.  MyDirectives also works with health plans to distribute the tool to their patient populations. 
 
Willing is a platform designed to create legal wills online. It offers an online tool for users to create a will or living will in minutes and helps users find and compare costs for funeral homes and cemeteries in order to save families time and money. Willing raised an undisclosed amount in 2015.
 
All models encouraging individuals to engage in end-of-life planning face ongoing barriers to adoption, but recent attention on the topic, growing comfort with virtual care models enabling personal discussions to be delivered at scale, and rising out-of-pocket and overall health care costs all have the potential to make now the time for end-of-life companies to succeed.