Digital End-of-Life Planning Industry Overview: 11 Companies, 2 Service Models, and Significant Market Gaps Remain

A 2013 national survey found that while 90% of Americans considered it very important to discuss end-of-life medical plans with their families, fewer than 30% actually did so. Another survey in 2014 revealed that only 26% of the American respondents had completed advance directives, such as living wills or other legal documents outlining their end-of-life wishes. A survey by the National Funeral Directors Association (NFDA) further confirmed that although 63% of people believed it was crucial to discuss their funeral preferences with their families, only 21% actually followed through.

A 2016 survey conducted by The Economist and the Kaiser Family Foundation found that 12% to 24% of respondents who had lost a close loved one acknowledged that the patient’s end-of-life wishes had not been fulfilled. Meanwhile, 25% to 38% believed that their friends or family members had endured unnecessary suffering. In the same survey, the majority of respondents rated the quality of end-of-life medical care as “fair” or “poor.”²

In fact, 70% of Americans claim they would prefer to die at home, yet only 25% actually fulfill this wish. Additional surveys have found that between 1998 and 2010, an increasing number of Americans experienced distress, depression, and suffering during the last year of their lives. Precisely because we have failed to take action in both family communication and the implementation of legal documents, individual preferences are often not honored.

Unnecessary end-of-life care not only prevents patients’ wishes from being fulfilled but also incurs substantial economic costs. In 2015, U.S. spending on Medicare reached $646 billion, with an estimated 28% expended during the last six months of patients’ lives. Patients themselves also bear high medical expenses in the final stage of life.

A study by the Icahn School of Medicine at Mount Sinai in New York found that in the last five years of life, out-of-pocket costs for individual Medicare beneficiaries were approximately $39,000, while costs for couples following the death of one spouse were around $51,000. For 25% of individuals, these expenses exceeded their total household assets, and for 43%, they surpassed their non-housing assets.

However, if terminally ill patients choose to remain at home to receive palliative care and/or hospice services, thereby avoiding unnecessary medical interventions, both the patients and their families experience greater well-being, and the patients’ lives may be prolonged. Some healthcare providers and payers are striving to honor patients’ wishes while reducing unnecessary end-of-life care costs through Advance Care Planning (ACP). Clinicians and/or other social workers assist patients in developing comprehensive plans and documenting their preferences.

Currently, organizations dedicated to Advance Care Planning (ACP) include Gundersen’s Respecting Choices in Wisconsin and Sutter Health’s Advanced Illness Management (AIM) program in Northern California, which focuses on the late stages of chronic diseases. Gundersen’s program has reduced patients’ average hospital stay by 7.2 days, lowered their healthcare expenditures during the last two years of life by $23,000 compared to the national average, and extended patient survival by 25%.

Others are dedicated to promoting advance care planning nationwide, helping Americans understand the importance of personal decision-making, family communication, and executing legal documents. These excellent nonprofit resources include The Conversation Project, founded by Pulitzer Prize winner Ellen Goodman to share end-of-life stories; DeathWise, which helps people discuss and create advance care plans; and ACP Decisions, which encourages family members and patients to participate jointly in medical decision-making.

Compared with startups in healthcare and chronic disease management, companies in the digital health sector that offer advance care planning services and end-of-life preparation programs have yet to gain significant traction. Moreover, given the enduring psychological barriers surrounding the topic of end-of-life planning, these companies still have a long road ahead.

Even so, we remain confident that effective models can rapidly build trust between patients and enterprises, leverage experts with extensive experience in navigating such challenging communications, engage families in patient decision-making, and assist patients and healthcare providers (including primary care and acute care) in jointly discussing and documenting patients’ wishes, ultimately providing greater comfort to patients and their families while reducing costs.

VCBeat (WeChat: vcbeat)A detailed compilation of basic information on 11 digital end-of-life planning companies has been conducted. Based on the differing focuses of their service offerings, two distinct models and their respective representative enterprises have been identified. One model collaborates with healthcare payers and providers—who can attract a large patient volume through financial incentives—and focuses on critically ill patients. The other adopts a broad outreach strategy, engaging directly with individual consumers and families to raise public awareness of end-of-life planning.

Such models typically involve selling technology-enhanced services to healthcare providers, health plans, payers, and patients with serious illnesses.

Successful enterprises must achieve the following:

1. Patients may perceive advance care planning as a form of "surrender." Therefore, even though it is challenging and potentially distressing, particularly when patients are likely engaged in a struggle against critical illness, we must encourage them to participate in discussions about end-of-life issues.

2. Involve family members. If they do not accept the plan, advance directives are unlikely to take effect. Achieving this is equally challenging, as engaging both patients and their families in joint decision-making can be highly complex.

3. Ensure that patients sign multiple copies of the documents for distribution to physicians, reference by home emergency care specialists, provision of materials for emergency medical preparedness, and backup in the electronic health record (EHR) system.

4. Establish trust with patients to facilitate communication at any time. Clearly, in such conversations, physicians are the most trusted parties; however, they often lack sufficient time, strong willingness, and adequate training. Other stakeholders, particularly healthcare payers, are unable to garner the same level of trust from patients.

5. Ensure that communication takes place in a humane and reasonably priced environment. End-of-life conversations are best conducted face-to-face, but this is not always feasible; therefore, any virtual care or remote communication must be carefully planned.

6. Focus on the patient, not on costs. The scope of end-of-life planning for patients is broad, encompassing healthcare, death, funeral arrangements, estate planning decisions, and more, whereas health plans consider only medical decisions and costs. Successful models will strive to meet all the needs of patients and their families.

List of Companies:

Copilots in Care

The business model of the hospice care company Copilots in Care was a failure. The company had attempted to get payers to cover expanded services that were pre-negotiated remotely for critically ill patients, and then have social workers visit patients’ homes to complete discussions on end-of-life care planning. Copilots in Care went out of business in 2016.

Emmi Solutions

Emmi Solutions, a subsidiary of Wolters Kluwer, is a patient engagement platform that provides online interactive multimedia programs and interactive voice response (IVR) telephone services. These offerings deliver integrated healthcare services to patients, encompassing prevention, treatment, follow-up care, and advance care planning. Emmi was acquired by Wolters Kluwer in 2016 for $170 million.

Iris Plans

Iris Plans is a telehealth platform marketed to payers and healthcare providers. It proactively identifies individuals who stand to benefit most from advance care planning, conducts video consultations with patients, provides disease-specific educational tools, and empowers patients to make informed medical decisions tailored to their individual circumstances.

Vital Decisions

Vital Decisions provides specialized services for advance care planning and end-of-life decision-making. Experienced social workers, on behalf of health plans and payers, engage in extensive telephone consultations with terminally ill patients to discuss their healthcare options. Vital Decisions was acquired by MTS Health Investors in 2012.

Vynca

Vynca focuses on healthcare providers, offering technological solutions for sharing end-of-life care plans among various healthcare providers. The company utilizes the Physician Orders for Life-Sustaining Treatment (POLST) paradigm to ensure that patients’ wishes are honored. Although POLST has been widely adopted in 43 states, paper-based POLST forms are inaccessible in nearly 90% of emergency situations. Therefore, Vynca provides a technological solution to digitize these forms and integrate them into healthcare providers’ workflows. Vynca raised $4.9 million in angel investment in 2015.

WiserCare

WiserCare is an information technology solution for clinical decision support, paid for by hospitals and healthcare systems to enable smarter, faster, and more effective medical decisions. To date, the company has raised $5.8 million in funding from various investors.

Such models typically engage customers directly via the internet, providing comprehensive training on end-of-life care, funeral arrangements, and estate planning, along with legal documents, storage, and/or analytical tools. These services are either entirely free or available for a nominal fee. Such companies sometimes monetize by partnering with distributors that fund these digital tools, thereby generating economic benefits for their employees, members, or other beneficiaries.

Successful enterprises must achieve the following:

1. Engaging and encouraging a broad segment of the general public to participate in discussions on this sensitive topic of end-of-life planning, regardless of their stage in life or health status, is in fact even more challenging.

2. Ensure acquisition of these customers at minimal cost.

3. Provide customers with training related to decision-making, efficient and low-cost documentation tools, and various required digital services. This is because the average individual does not need payers or healthcare providers to foot the bill for one-on-one patient engagement and personalized discussions.

4. Provide customers with long-term data storage services for future needs and share these records with family members.

5. Ensure that users sign multiple advance directive documents for use by physicians and for documentation in the electronic medical record system.

6. Assuming all personal decisions at once, effectively and in a single instance, without ensuring the user’s emotional stability, even though these individuals may have never previously considered such decisions.

List of Companies:

Cake

Cake provides users with a platform to express their end-of-life wishes and preferences, helping them discover, store, and share their advance care plans. Targeting the general public, the company guides users in making decisions across various aspects of personal end-of-life planning, including healthcare, legacy, legal matters, and funeral arrangements. Cake partners with employers and health plans to reach employees and patients, converting them into its users. In 2016, Cake raised an undisclosed amount of funding from Bantam Group and Nautilus Ventures.

Everplans

Everplans is an online platform for funeral and end-of-life planning. The company provides a platform that allows users to create end-of-life planning documents, including their final wishes, wills, healthcare proxies, financial information, legal documents, bank account details, and other critical personal information. Users can share this information with individuals who can help them execute their end-of-life plans. To date, Everplans has raised $12.6 million in funding, with its first round led by Mousse Partners in 2016.

Grace

Grace initially operated as an online concierge service platform for funeral arrangements and end-of-life care, later transitioning into a hospice care marketplace that also provides education on the benefits of hospice care to patients and their families. Grace raised $800,000 in funding in 2016.

MyDirectives

MyDirectives is a comprehensive digital service for emergency, critical, and advance care planning that is secure, easy to understand, and free of charge. iPhone users can also download the MyDirectives app for free from the Apple App Store. The company is also collaborating with health plans to deliver this tool to patient populations. In 2012, MyDirectives secured $5 million in angel investment.

Willing

Willing is a platform for creating legal advance directives. Users can create an advance directive or will within minutes, while also comparing prices among funeral homes and funeral service providers on the platform, thereby saving both time and money. Willing secured funding in 2015, with the specific amount undisclosed.

In addition to the aforementioned 11 companies, this report also includes one company on the verge of entering its trial operation phase—After.

After, an end-of-life planning software, is dedicated to providing informative medical videos, organizing critical legal and medical frameworks, and coordinating patients’ end-of-life care needs with stakeholders. It focuses on common fatal conditions such as cancer, heart disease, Alzheimer’s disease, chronic lower respiratory diseases, diabetes, and stroke, leveraging video content to educate patients about their prognosis. Patients can also create their own advance care plans and gather attorney information within the app. The company’s innovative approach lies in offering personalized, human-centric questions to understand how patients wish to spend their final stages of life. Founded in January 2017, the company plans to launch its pilot operation this August.³

Despite the enduring human desire to evade the harsh reality of death, all models continue to encourage engagement in discussions about end-of-life planning. Recently, this topic has garnered increasing attention, attitudes toward virtual care models have improved, and individual decision-making has subsequently been promoted on a large scale.

Currently, there are still many gaps in this industry waiting to be filled. The continuously rising expenditures and total healthcare costs may offer hope for the future success of companies providing end-of-life planning services.

Note:

1:http://www.mobihealthnews.com/content/how-digital-health-innovators-are-changing-status-quo-end-life-planning

2:https://www.economist.com/news/international/21721375-how-medical-profession-starting-move-beyond-fighting-death-easing-it-better

3:http://chicagoinno.streetwise.co/2017/06/27/entrepreneur-aims-to-make-end-of-life-care-more-compassionate/