End-Of-Life Planning: Mitigating Consumer Vulnerability
“Time and again, hospice professionals see families in the hallway of the emergency room or ICU trying to figure out what Mom or Dad might have wanted, and that’s a very tough time to think these things through. People often put more thought into preparing for the family vacation — the transportation, the timing, the meals — than planning for the end-of-life experience we’ll all have.” ¹
Death is a taboo topic in Western society. As such, many people avoid discussing and preparing for it. By avoiding it, individuals neglect end-of-life planning; compromising themselves and their families. It is estimated that 70% of the British public is comfortable discussing death, but I beg to differ. ²
We have recognised the neglect towards end-of-life planning and the associated financial, emotional, medical, and practical repercussions on the individual, their family and the wider healthcare system.
This maximises consumer vulnerability and we have conducted research with the aim of working toward solutions that reduce this vulnerability.
WHAT DOES A SUCCESSFUL DEATH MEAN TO YOU?
Inspiration comes from Atul Gawande’s book titled ‘Being Mortal’. He describes ‘ars moriendi’ (the art of dying), relating to Latin texts dating from the 1400’s which prescribed customs that people followed when they died. Today, advancements in medical care have lengthened and complicated the death process creating new considerations for mankind with regard to how to die with dignity.
He states that individuals desire to:
· Avoid suffering
· Strengthen relationships (with family and friends)
· Be mentally aware
· Not be a burden on others
· Achieve a sense that their life is complete
Evidence provided indicates that, in most cases, these desires are not met. However, with effective end-of-life planning, a patient’s medical wishes can be met. This ensures that their family and friends are not burdened by tensions with one another, their doctors, nor financial complications arising from the inevitable death of a loved one.
This is where innovation in the end-of-life planning space can create an impactful difference.
Case in point (true life story)
Nine years ago, an 87-year old family member suffered an unexpected heart attack. At the time, she was recovering from major surgery. Before undergoing a triple bypass procedure, the specialist surgeon suggested that the family gather to discuss the willingness to proceed. The surgeon emphasised the delicacy of the situation and the associated risks.
The family proceeded with the surgery. To them, there was no alternative. In retrospect, they now understand why the surgeon asked the question. Why? Because their loved one’s health has never quite been the same again.
The individual didn’t proactively prepare an end-of-life plan. The family did not encourage them to either, which has complicated matters and compromised relationships. Nobody took the time to understand what a successful death meant to their loved one, and what they would want. Nowadays one can only guess, and even with the best intentions, fond memories are replaced with uncomfortable experiences of visible pain and unhappiness.
THE PROBLEM
This problem is universal.
For context, in the UK 76% (~460,000) of 600,000 deaths (2015) are classified as ‘predictable deaths’ (i.e. poor health).³ Even still, it’s estimated that:
· 1 in 5 predictable deaths have an unmet need for expert end-of-life care ⁴
· 1 in 5 of all patient’s care decisions were not aligned with their wishes ⁵
· The NHS spends £36M per annum above and beyond what is deemed necessary to effectively treat terminally ill patients ⁶
The law states that people must be assumed to have capacity unless proven otherwise. Without effective end-of-life planning, the default is that only the healthcare professional has the final say on a patient’s treatment (not family or friends). The healthcare professional also can’t share any information about the patient’s care or treatment with the family unless the patient gives them permission to do this. Yet, most are unaware.
In order to address this, individuals need to have these difficult discussions and document their wishes. Thanatophobia aside, the quantity and diversity of documentation is often confusing to navigate independently. Even if one is willing and able to get their affairs in order, 36% of the British public don’t know where to find information to consider end-of-life-planning.⁷ As such, take up of these documents is very low:
- Lasting Power of Attorney (LPA): Personal welfare and financial affairs
- Living Will/Advance Directive/Advance Decision: Medical wishes
- Advance Care Planning (ACP): Care preferences & treatment decisions
- Advanced Statements: Wishes, beliefs and values (part of ACP)
- DNAR/DNACPR Forms/Order and CPR Decisions: Refuse CPR only
- Last Will and Testament: Distribution of property & possessions
All legal documents must be signed by a testator in the presence of two witnesses. Many have tried digitising some of these documents, but this legal requirement has prevented the opportunity for a fully-digital solution.
WHAT DOES PROGRESS LOOK LIKE?
To many, this may seem like an intractable problem that’s impossible to solve.
The case studies below prove otherwise, representing contrasting models in the United States. The ethical and financial considerations between putting the patient first (as you should) versus prioritising cost savings for medical providers and insurers.
There is a clear market opportunity to address this issue in the UK correctly, and based on my research there is no credible solution within the UK currently.
Respecting Choices ACP (La Crosse, Wisconsin)
“It turns out that if you allow patients to choose and direct their care, then often they choose a course that is much less expensive.”
Value proposition: Ensuring patient’s wishes are met, while providing a potential cost saving to their families and hospitals.
Collaboration between Bud Hammes, Gundersen Health & other health providers; offering training on how to have difficult conversations with patients and families (three/four consultations to complete). There are 10,000 trained facilitators across 130+ health systems and medical centres globally.
Performance indicators show strong improvements in take-up of Advance Directives since implementation in the early 90’s, encouraging the public to record the treatments they don’t want in the future. Within the first two years, take-up of Advanced Directives went from 2% to 45%.⁸ Since 2009, it has sat at 96%+ which is 3x the national average — unchanged over the past 30 years. Overall, this has reduced the average cost of a patient’s last two years which is now 43% lower ($18 159) than the $26 000 national average ($65 000 in some hospitals).⁹
There are sustainability concerns, as hospitals do not earn money from Respecting Choices. However, the Affordable Care Act (ACA) does encourage providers to reduce spending which could see greater implementation across the US over time.
Vital Decisions (acquired by MTS Health Investors in 2012)
“An Advance Directive alone is not enough — this is about improving the communication and shared decision making among clinicians and family members, and recognising the importance of changing the behaviours of the participants in the process.”
Value proposition: Save providers (and insurers) money, while ensuring the patient’s wishes are met.
Specialists in Advance Care Planning (ACP) behavioural science, partnering with 20+ health plans to identify those most in-need while gaining access to ‘Medicare Advantage’ claims data for terminally ill patients (not limited to government health plans). 200+ employees, each holding a Masters-level education and 3+ years of industry experience.
Performance indicators show that Vital Decisions has covered 2.7M lives and reaches 30K+ new individuals annually at customer satisfaction levels of 96%.¹⁰ This has saved providers ~$250M (5:1 ROI for intervention members) while saving ~$14K during a patient’s last six-months of life (23% — 26% lower end-of-life costs).¹¹
Don’t be mistaken, end-of-life planning is not a topic that should be limited to the elderly nor the terminally ill. The nature of the problem spans all generations of society. Why? All family members are impacted by this, not just the individual. As such, all consumers are essentially vulnerable.
The UK population sits at 65.6M — its largest ever. Of this, there are 18.9M families that will directly benefit from effective end-of-life planning. If we can reduce friction within the system and educate the market; then we can create a fundamental shift in market sentiment and mitigate consumer vulnerability.
Opportunity awaits.
As a whitespace, we at the Anthemis Foundry are actively seeking a Founder. An individual who shares in our obsession to cultivate sustainable change and mitigate consumer vulnerability for the betterment of society. If you or your network would like to learn more, please feel free to reach out.
E: Dario@Anthemis.com
[1] Hiss, K, December 2016, “Things smart people do to prepare for death”
[2] Shucksmith, J, Carlebach, S & Whittaker, Vicki, 2013, “British Social Attitudes 30 — Dying Matters”
[3] , [4] Hospice UK, November 2016, “Hospice care in the UK 2016”
[5] Colvin, H, April 2016, “National Survey of Bereaved Peoples (VOICES): England, 2015”
[6] Mendick, R & Donnelly, L, July 2015, “One in seven treatments not necessary, warns NHS chief”
[7] ComRes, April 2016, “Dying Matters Coalition — Public opinion on death and dying”
[8] Smith, A, June 2018, “It’s time to talk about end of life care”
[9] Hatkoff, C, Kula, R & Levine, Z, September 2014, “How to Die in America: Welcome to La Crosse, Wisconsin”
[10] Vital Decisions, September 2018, “Health Plans — A humanistic approach to Advance Illness Planning for families”
[11] Vital Decisions, September 2016, “Vital Decisions economic impact methodology validated by Milliman Inc.”
