A New Industry Emerges Around Advance Care Planning

Companies are springing up nationwide offering products and services to support advance care planning, signaling that a new industry is joining forces with health care to ensure that patients receive goal-concordant care.

Many of these companies offer technological solutions or frameworks to guide difficult conversations about end-of-life care and surragate decision makers should a patient become incapacitated, as well as electronic documentation systems. Some go a step further and offer consulting to patients, families and clinicians around these plans.

“We have seen a lot of folks trying to build tools to enable advance care planning, and it could be that an industry is developing there. I think that you see more folks exploring the process-related aspects of advance care planning because that’s where the key problems are today,” Arul Thangavel, M.D. president of Wisercare told Hospice News. “I think that the stage is set today with digital technology permeating the health ecosystem for engaging with populations in advance care planning, leveraging the work that has been done for decades now, but using new digital technologies to make sure those efforts are scaled across the population embedded into work flows that make sense.”

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San Francisco-based Wisercare launched five years ago and early on developed a software platform to support shared decision making, in which the patient and clinician collaborate on making medical decisions based on the patients’ preferences and goals and the clinician’s medical expertise.  In time, requests from their customers indicated to Wisercare that their platform could be adapted to support advance care planning, for which a market was growing. 

A number of societal, clinical and economic factors are driving the growing push for advance care planning among patients, health care providers and payers. One significant factor is that Medicare, and a growing number of other payers, now cover it.

The U.S. Centers for Medicare & Medicaid Services in 2015 approved a final rule allowing physicians to bill for advance care planning. However, though many saw the benefits of these plans and the conversations surrounding them, some physicians felt unprepared.

“As a physician myself, I can tell you there is very little education around how to have these difficult conversations in medical school curricula right now, and I think that goes for any of the other health care professions,” Ryan Van Wert, M.D., co-founder and CEO of Vynca. “So you have clinicians that recognize the need to have those conversations, but they don’t have the toolkit and the knowledge of how to have the guided discussion.”

Vynca brought to market technology solutions to support education and engagement in advance care planning, shared decision making, electronic completion of documents and systems that allow patients, families and clinicians to access those documents when necessary.

“The reality is that [advance care planning] is a complex process involving a difficult conversation. There are educational gaps, and then challenges with aspects of how patients’ wishes and goals are being documented, kept up to date, and ultimately accessible to the providers that are going to be managing that care eventually at the end of life,” Van Wert said. “There are emerging solutions that have addressed components of this. There are organizations — and some of these are for-profit and some of these are nonprofit — that have frameworks to guide the discussion.”

One such organization is Uphold Health, a Chicago-based advance care planning company that offers software support as well as a care navigation service that provides a social worker to help patients and families manage their care through the end of life. The company plans to expand its operations to the Houston and Boston markets this year.

Founder and CEO Margaret Norris launched the company to help patients and their loved ones address some of the challenges that her own family faced when both her father and stepfather were suffering from terminal cancer.

“I lost my dad and stepdad to cancer in my early 20s; I was their primary caregiver along with my sister and my mom.” Norris told Hospice News. “We found that navigating the health system, trying to figure out what we needed to know to give them the best possible care, was a really frustrating situation and experience.”

While a number of companies offer solutions to help health care providers navigate advanced care planning processes, Uphold Health also works directly with consumers, as well as home health providers, oncology departments and skilled nursing facilities. The company is in talks to begin working with at least one health plan.

“Advance care planning is such a specific term that speaks to the documentation of future care wishes, but I think that it is fair to say that an industry is springing up around it, but it is expanding the definition of what it means to prepare for end of life,” Norris said.

The growing industry is part of a larger movement to provide greater support for people suffering from serious or chronic illness, up to and including their end of life care, Norris added.

Thangavel pointed the three major trends that are feeding into the renewed interest in advance care planning, including shifts towards value-based care, increased public awareness of advance care planning and increasing recognition of the importance of goal-concordant care for patients.

Among patients, he said, people are growing more comfortable having conversations about death, hospitalization and serious illness care, as well as the associated costs. Among providers Thangavel has seen growing frustration that they are often providing care that they know the patient doesn’t want, but that providers are required to give because they have not received instructions to the contrary.

“So you have patients who are languishing in the [intensive care unit] for months, and even if the primary care doctor knew that the patient wouldn’t want this sort of life, there is no way to communicate that adequately to the health care system in an ethical and legal way to get that patient the care that they want,” Thangavel said. “So physicians are struggling with this, because they want to deliver the best care and to alleviate suffering at the end of life, and yet they feel constrained because they don’t necessarily have direction on what the patient would want.”

Demographics also play a role, from the rapidly aging baby boomer generation — 10,000 of whom become Medicare eligible every day, according to the Kaiser Family Foundation — to the rise of the tech-savvy millennial generation that is tasked with caring for aging parents, other family members and friends and will be increasingly involved in end-of-life decisions.

“The opportunity is in looking at the overall market and evaluating who is going to be making these decisions, and who is going to be responsible for these consumer purchases at the end of life,” Norris said. “It’s going to be [millennials]. We are a tech savvy generation, and we are used to having everything on demand. We are used to going to our phones and being able to get any kind of service at any time, and are we looking at solutions that are going to meet our needs as customers.”

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