Don’t laugh, but I have been obsessed with mortality lately. Not in an “early-2010s scene kid scrolling moody tumblr pages while listening to linkin park” kind of way; more in a “experiencing unbridled dread while watching ‘80 for Brady’ at the movie theater last week” kind of way.
On the bright side, this minor existential crisis (I’m fine!!) prompted me to explore some of the interesting developments taking shape in the realm of end-of-life care.
These developments are important because despite the gains achieved in longevity and end-of-life care quality over the past several decades, terminal illness can still elicit deep sorrow as illustrated by the tragic story of the Gilland family from a few weeks ago:
Jerry Gilland, a 77-year-old terminally ill man, made a pact with his wife about three weeks ago, the authorities said: If his failing health did not improve, he wanted his 76-year-old wife, Ellen Gilland, to kill him.
His health continued to decline, and so shortly before 11:30 a.m. on Saturday, Ms. Gilland brought a gun inside AdventHealth Hospital in Daytona Beach, Fla., went to Mr. Gilland’s room on the 11th floor and fatally shot him in the head, the police said. She had planned to fatally shoot herself, too, but in the end, “she couldn’t go through with it,” said Chief Jakari E. Young of the Daytona Beach Police Department.
…
Chief Young said it appeared that the couple had planned for Mr. Gilland to shoot himself, but he lacked the strength. “So she had to carry it out for him,” he said.
Overall, there are still substantial gaps to close in addressing physical, mental and spiritual needs of the terminally ill.
This post is a discussion of where end-of-life care is today, some interesting startups emerging to elevate the standard of care, and some not so far-out ideas that could shape end-of-life care over the next decade.
End-of-life care: a continuum
End-of-life care typically refers to the final months of an individual’s life, but it is part of a broader continuum of care for “life-limiting” diseases that encompasses palliative care, hospice and bereavement.
As a result of improvements in infant mortality and broad-based longevity gains achieved over the past century, death has shifted generally into an “old-age phenomenon.”
As a result, end-of-life care in the US is largely covered by CMS. Medicare spends >$20bn per annum on hospice care alone. While that number seems high, there is a meaningful argument that greater emphasis on end-of-life and hospice care reduces the overall cost burden on the healthcare system. 10% of an individual’s lifetime medical spend takes place in the final year of life, largely driven by curative interventions aimed at prolonging lifespan (while often reducing quality of life during that period). For example, 10% of Medicare recipients had surgery in the final week of life.
How is end-of-life care trending? Overarching trends seem positive.
The tools we have today to quantify the quality of an individual’s passing are kind of weird. One established metric is to look at the “site of death” as a leading indicator for the individual’s quality of life at the time of passing. Ideally, patients are able to pass away in the comfort of their own home. Surveys indicate 70%+ of people prefer to pass in-home, and in-home deaths are generally considered less taxing for family and caregivers. “Worse” outcomes include passing away in a nursing home or a hospital setting.
By this measure, quality of end-of-life outcomes has materially improved over the past decade, with deaths at home surpassing in-hospital deaths.
Further, while the increase in the number of individuals receiving hospice care is partially driven by an aging population overall, there’s evidence that utilization rates are also increasing (excl. pandemic). As the US population continues to age and utilization rates right-size post-pandemic, the number of people enrolling in hospice every year should continue to grow rapidly.
There are still real challenges in end-of-life care: poor communication between providers/patients/caregivers/family, an anemic staffing environment (in line with just about every corner of care delivery), limited deployment of technology/data/analytics, significant racial disparities in access to /utilization of care. COVID-19 had a major impact on the industry, changing workflows and exacerbating staffing issues.
Solving some of these issues can work to align end-of-life care more tightly with people’s key priorities - ensuring adherence to their end-of-life care preferences while relieving the burden on the ones they leave behind.
There are several companies forming to address some of these gaps. Here are some interesting areas where startups are innovating around end-of-life care today:
Sorry if I left your company off of this, if I did it’s because I couldn’t find you on Bing
Advance Care Planning
Advance care planning (ACP) involves creating alignment around care goals and future care decisions should an individual’s health deteriorate due to a life-limiting illness. ACP is a billable service that can be rendered by a provider. As part of ACP, individuals can create Advance Directives which are forms of legal documentation of a person’s wishes about their medical treatment based on their values and preferences (e.g. living will, durable power of attorney for health care).
Improving ACP is a key lever to enhancing overall end-of-life care quality. >60% of people in declining health report feeling insufficient control over their medical care. This might be because most people still have never have a discussion about end-of-life care with a medical professional, despite really wanting to:
Effective ACP can help patients and their families feel more in control. Companies like VyncaCare, WiserCare, and Koda Health are increasing access to ACP by digitizing the process, proactively identifying patients who might benefit from ACP today, and connecting individuals to ACP facilitators.
Tech Enabled Hospice
There are multiple opportunities for technology to elevate hospice care. Similar to other areas of healthcare, better provider technology (e.g. more intuitive clinical software/EHRs, workflow automation) can reduce administrative burden enabling more time spent with patients. Better family/caregiver support technology can improve engagement and communication, reducing the burden on family members/caregivers supporting a loved one in hospice.
Guaranteed is developing a next-generation hospice care platform with the goal of doing exactly the above - improving the hospice experience for both providers and patients by leveraging technology. For example, the Company enables providers with a purpose-built EMR to improve key workflows, while providing patients and family members with a proprietary app for telemedicine visits and access to educational resources.
Bereavement Care
Bereavement care companies provide tools for family members and caregivers to better manage both the emotional challenges of losing a loved one as well as the literal logistical challenges of losing a loved one. For example, Empathy enables companies to offer an employee benefit to help navigate both administrative issues (e.g. funeral planning, closing subscriptions/financial accounts) and the emotional pain of loss. With the average family spending 12+ months resolving financial matters for a passed loved one, streamlining these activities is a legit value add.
Lantern connects individuals with a 1:1 guide to help navigate loss. Autumn seeks to make “loss more livable” with an end-of-life marketplace that connects bereaved people to loss-related service providers with an interface that feels intuitive to e-commerce natives.
With a spectrum of models ranging from high-touch to self-serve emerging in the market, it will be interesting to see what resonates most deeply with consumers.
Let’s get mystical
I had a few ideas which I have yet to see in the market but could be compelling commercial opportunities in the future.
Culturally Competent Hospice 🫶🏻🫶🏽🫶🏿
Non-white racial groups materially under-utilize hospice care.
It’s not surprising when you consider the myriad areas where there are deeply entrenched racial disparities across the US healthcare system, but the drop-off in the utilization of the Medicare-covered hospice benefit is particularly pronounced. Sherman Leung and Dan Arteaga wrote this detailed piece unpacking some of the underlying drivers of this phenomenon. For example:
Much of this is cultural and tied to spiritual beliefs as well for many minorities, many of whom value life-prolonging care, full code statuses, and hold beliefs of miracles, God’s will, and/or fatalism. “There’s a lot of African Americans who think saying ‘no’ to medical care is like saying ‘no’ to God. It’s like you are trying to take things in your own hands and not trusting God’s timing” (source) One of the biggest sticking points is around reimbursement policies that require patients to discontinue curative treatment in order to qualify for hospice care. Though some families have found ways to reframe hospice care to align with their values, this choice between treatment vs hospice is a large barrier for many patients who consider hospice care.
This being said, providers themselves are also to blame for end-of-life discrepancies in whose preferences they choose to listen to: “It appears that providers adhered to the EOL (end of life) preferences of white Americans more often than African Americans” (source 1, source 2)
Many health tech startups have emerged to close racial disparities in healthcare by providing “culturally competent” primary and specialty care (e.g. Hurdle, ReKlame Health, Spora Health). I think a similar model could emerge to drive greater hospice utilization and better end-of-life care outcomes for non-white patient populations. There might also be opportunities to coach clinicians across the continuum on having more productive, culturally sensitive discussions around end-of-life care with their patients.
Psychedelic Medicine 🍄
Psychedelic medicine is gaining steam as a potential tool to improve behavioral health outcomes. While most discussion and capital formation around the use of psychedelic medicine is focused on addressing treatment-resistant psychiatric conditions, the hospice and end-of-life setting may be a prime candidate for psychedelic treatments.
Recent research suggests that there might be significant psychosocial benefits to patients receiving even a single dose of psychedelic treatment as part of end-of-life care:
When administered under psychologically supportive, double-blind conditions, a single dose of psilocybin produced substantial and enduring decreases in depressed mood and anxiety along with increases in quality of life and decreases in death anxiety in patients with a life-threatening cancer diagnosis. Ratings by patients themselves, clinicians, and community observers suggested these effects endured at least 6 months.
Source: “Psilocybin produces substantial and sustained decreases in depression and anxiety in patients with life-threatening cancer: A randomized double-blind trial.” Journal of Psychopharmacology
Secondary outcome measures… included assessments of existential distress, quality of life, and spirituality, as well as measures assessing immediate and sustained effects of psilocybin administration on subjective (e.g. mystical) experience, cognition, affect, spirituality, and behavior.” [pink is the psilocybin treatment group,. blue is the placebo group]
Source: “Rapid and sustained symptom reduction following psilocybin treatment for anxiety and depression in patients with life-threatening cancer: a randomized controlled trial.” Journal of Psychopharmacology.
While there’s much more work to be done in validating these treatment pathways, end-of-life care might emerge as a setting that is amenable to experimentation given the underlying prognosis of patients.
Virtual Reality & the Metaverse 🥽
As I wrote last year, the Metaverse™ is relevant to healthcare because it offers unique capabilities around convening geographically dispersed people together into a synchronous, live experience within a rich, visual environment.
In end-of-life care, VR could be used to provide people with experiences that they are physically unable to partake in as their health declines. These experiences could offer meaningful benefits related to physical pain management and quality of life:
Virtual reality (VR) provides temporary escapes from pharmacologically resistant pain and allows for experiences and journeys patients may not access in any other way. Enabling wishes through virtual worlds may also offer additional benefits such as controlling psychological and physical symptoms.
Consider this story from 2019 as an illustrative case study:
When hospice nurse Laurie McKay arrived at the emergency room, her patient -- a man in his early sixties with terminal cancer and now a fractured hip -- told her: "I knew you would be coming someday, but today my wife and I were supposed to be getting on a cruise ship."
McKay, who is chief nursing educator for Continuum Care Hospice based in the San Francisco Bay Area, didn't want the couple to miss out on that last cruise to Alaska together, so she turned to a tool that Continuum had started using with its patients -- virtual reality.
She made an appointment to visit the couple once they were back at home. Using Samsung Gear VR headsets and Google Earth VR, she'd mapped out all the ports where the cruise would have stopped, giving the couple the 360-degree views of ocean, waterfalls and ice caves they might have had in person. McKay also showed the man his childhood home in the present day, and the marina in California where the boat he'd been working on was docked.
"These were experiences he thought he would never be able to see completed," McKay said.
…
McKay -- the nurse who plotted out the cruise ports for the couple who missed their trip -- said the man's wife reported that he told everyone who came to visit him about the VR experience. And when he died, she even talked about it at his service.
"[He thought] he was going to end up simply being in a bed in his home waiting to die," McKay said. "Instead he found he was able to live and participate and find enjoyment each day that he was given."
Future experiences could be self-guided, therapist-guided, or “multiplayer” with an individual’s loved ones. Such experiences could truly transform the way that we experience our final months of life, enabling a wealth of adventures and shared memories with the people we care about.
distressing!!
Embracing the Inevitable
While I personally have a loooong way to go in getting comfortable with mortality, I’m optimistic that end-of-life care will be transformed by technology over the coming years such that there will be a breadth of tools available for individuals coming to terms with loss. In the meantime, let’s get busy livin’.
You might also find interesting:
🧠 End Well - End Well is a nonprofit focused on exploring new frontiers in end-of-life care. Some great resources and presentations from thought leaders in the field
📚Being Mortal by Atul Gawande - kind of a cop-out to include this book almost everyone knows, but it’s still an insightful read about end-of-life care through the lens of the health care system. If you haven’t read it yet, I’d give it a go
📺Limitless with Chris Hemsworth (Ep 6 - Acceptance) - this series on Disney Plus is about Chris Hemsworth trying to find ways to increase longevity, but the final episode shifts gears to exploring how to come to terms with one’s own mortality. They do some really thought-provoking exercises which I think are worth checking out
🏈 80 for Brady - just kidding. please do not watch this
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Great piece - thought provoking. Thanks!
Fantastic article! Saved.