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Insights
01
Medical and legal systems punt the responsibility of EOL planning to the individual.
When preparing for death, there is tension between patient preferences, the life-sustaining philosophies of healthcare providers, the financial incentives within hospitals to treat illness aggressively, and the legal liabilities if patients’ wishes are misinterpreted.
To avoid confronting this tension, societal systems shift responsibility to individuals to explicitly document their EOL wishes in order to opt out of default life-sustaining protocols. This makes EOL planning siloed, inefficient, and non-collaborative.
02
Money sells. Death does not.
People tend to have less familiarity with advance directives compared to financial wills. Generally, it’s harder to plan for and imagine the abstract concept of death, as opposed to monetary scenarios with explicit payoffs for beneficiaries. Advance care planning also remains a largely self-initiated process, whereas financial planning has a more defined infrastructure. Lastly, although both the healthcare and financial fields involve highly technical jargon, innovation in healthcare happens quickly and often out of view for most people—creating larger gaps in health literacy compared to financial literacy.
03
EOL planning requires people to confront their mortality, which can lead to emotional overload.
There’s a misconception that end-of-life planning is planning AT the end of the life rather than FOR the end of life. As a result, young, healthy people dismiss the necessity and urgency of completing an advance directive, because they consider death to be far in the future. Meanwhile, many people think that simply discussing death will hasten the dying process, which creates avoidance and anxiety around EOL planning. Proximity to death—such as a recent death in the family, or a personal diagnosis with a terminal illness—increases likelihood of AD completion due to a heightened awareness of one’s mortality.
04
EOL planning requires people to confront complicated bureaucracy, which can lead to cognitive overload.
Individuals who perceive ADs as rigid and non-modifiable are unlikely to start one, because they do not feel ready to document their preferences “in stone.”
Meanwhile, many people consider ADs to be unwieldy due to their inconsistent terminology (e.g. “health care proxy” vs. “agent” vs. “medical power of attorney”) and the administrative burden of initiating and completing an advance directive. For instance, confusing notarization requirements and irregular advance directive formats contribute to cognitive overload.
05
Shame can either postpone or propel EOL planning.
Many people believe in the value of an advance directive, yet have not taken action in creating one. As a result, they feel shame stemming from their self-perception as irresponsible citizens, as well as embarrassment around not having the information necessary to initiate end-of-life planning. This shame can be prospective (knowing that tragedy might hit in the future, and feeling shame that one has not prepared for it yet) or retrospective (knowing that tragedy has already hit, and feeling ashamed for how the situation unfolded). In either case, shame pushes some to take action, while driving others to keep putting it off.
06
EOL planning is a team sport.
Communicating end-of-life (EOL) preferences is bidirectional—requiring deep thought, emotion, and expression of values from both the person completing the advance directive as well as their caregivers and loved ones. This creates opportunity for connection: empowering both the living and the dying to make informed decisions. At the same time, EOL planning (or the lack thereof) has the potential to introduce new conflict or exacerbate existing conflict within a family, often due to the misalignment of values. This may explain why people defer EOL planning, or why EOL planning doesn’t come to fruition.
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07
There are conflicting desires for standardization and personalization when it comes to EOL preferences.
Because traditional ADs are often binary in their options, and because they’re often a product of a singular majority culture or belief system, they fail to accommodate for the wide spectrum of culture that drives the dialogue (or lack thereof) surrounding the topics of death and dying.
This, in turn, deters people from engaging in the EOL planning process and can result in an end-of-life experience that are at odds with one’s cultural beliefs.
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Given their competing priorities, medical and legal systems shift the responsibility to individuals to explicitly document their EOL wishes and opt out of default life-sustaining protocols. This makes EOL planning siloed, inefficient, and non-collaborative.
