The top 3 leading causes of death in young adults in the US in recent years have been sudden deaths: injury, suicide, and homicide. Yet, only about 30 percent of adults under the age of 65 and 10 percent of people in their twenties complete an advance directive (AD). An AD provides medical staff and family of personal instructions about the medical care one wishes to receive if they suddenly lose the capacity to speak for themselves. However, there is very little awareness of the existence of ADs, let alone the process of establishing one, among young adults. After all, who wants to contemplate death when they are still young and healthy? Nevertheless, if the recent pandemic has taught us anything, it is never too early to consider the worst-case scenario.
The Patient Self-Determination Act of 1990 (PSDA), a federal law, requires any Medicare- and Medicaid-sponsored institution to inform patients of their rights to make medical care decisions for themselves in the form of an AD. The act compels states to decide the specific requirements for this document, which caused a great deal of confusion and inconsistency in the process.
Since then, there have been considerable efforts to engage the public in forming ADs. In fact, in 2008, “end-of-life” planning was officially added to the physical examination of new patients enrolled in Medicare. Additionally, in 2016, Medicare enacted a plan to incentivize physicians to consult on AD planning.
Missing Younger Patients
Despite these efforts, the PSDA does not quite reach its potential in serving the younger population. Between 2020 and 2021, out of the 92 percent of insured individuals in the US, only 19 and 18 percent were covered by Medicaid and Medicare, respectively. For young adults, only 14 percent of those covered by Medicare and 92 percent covered by Medicaid were under the age of 65. Effectively, most young adults will not be exposed to end-of-life planning unless they become hospitalized in a Medicare or Medicaid-sponsored facility.
By then, however, it will be too late. Major life decisions, such as appointing a healthcare surrogate or requesting life-support be withheld, should be made in good health and with peace of mind, not in a critical state. At the very least, having an end-of-life plan has been shown to alleviate guilt and anxiety for surviving relatives, as well as increase satisfaction with doctors and hospital staff. This is especially important in cases where a decision needs to be made about withdrawing artificial life support.
Cruzan & Quinlan Were Both Young
In court cases like Cruzan v. Director, Missouri Department of Public Health or In re Quinlan, the families fought to remove life support from a patient in the absence of an AD. In both cases, the patient was young and healthy, and became unexpectedly incapacitated. Because there was no clear evidence that either of them wanted the removal of life support, it took many years until they were able to rest in peace. The existence of an AD would have removed all doubts about their desire to die, spared their relatives and doctors much distress, and saved resources that could have been used to help people who had a chance to be saved.
No one leaves their house in the morning thinking they will be a victim of a car accident, an overdose, or a mass shooting, but the unfortunate reality is that these things can happen to anyone.
Reaching Young Adults
Still, convincing young adults to create an AD is challenging. Research into the attitudes of people aged 18 to 30 towards creating one revealed many misconceptions: many mistook an AD for a financial will, or felt that, due to their social independence (e.g., lack of partner or children), their sudden incapacitation or death would not affect many people. In addition, many seemed outright uncomfortable discussing death. Nevertheless, most participants expressed interest in learning more about creating an AD after the study, suggesting awareness is the most important factor.
Given this, there are several steps we can take to encourage young adults to establish an AD.
Incorporate ADs into our daily lives, not just at the ER.
Like the CDC during COVID-19, governmental entities need to utilize the power of social media to increase awareness about end-of-life planning. Furthermore, organ donors registered through checkboxes on DMV forms constitute the majority of organ donors in some states – a similar initiative for ADs could increase engagement as well. Simultaneously, difficult conversations about death and of loss of capacity need to be encouraged through ad campaigns to raise awareness and make people reflect on their own wishes. It is imperative that young adults understand that even if they lack assets, a partner, or children, there are still people in their lives who will be impacted by their sudden incapacitation. Lastly, while excellent online resources exist for end-of-life planning, like The Conversation Project or PREPARE, they all target the older population and are outdated. Instead, they need to be adapted for, and represented by, young adults to increase relatability.
While it is not simple to address interstate legal variation, better resources must be created to reduce confusion and redundancy: one, all-encompassing, user-friendly platform can summarize the core principles of Ads and highlight key differences across states. It could, for example, take users through a series of prompts to create a simple AD for them depending on the state they live in. AI tools could be leveraged for such a task. Lastly, efforts are being made by the non-profit organization National POLST (Physicians Orders for Life-Sustaining Treatment) to standardize the process of creating specific medical orders, demonstrating the feasibility of unifying user experiences despite varying legal processes across states.
Unconvinced opponents could argue that there is a danger in creating Ads during young adulthood, since one’s life views and circumstances tend to change drastically from one year to the next. This risks leaving out-of-date instructions for medical staff and families. A simple solution, however, would be to enact an annual or biennial review to ensure the AD reflects the individual’s most up-to-date desires. Similar reminders can be given upon registration of a marriage license, or during annual checkups with any physician, even those outside of Medicare.
Look Death in the Eye
It is time for us to look death in the eye — if not for our own sake, then for the sake of our loved ones. We can start small, by engaging in internal reflection and conversation with loved ones. We can join initiatives to increase awareness of the process, or push our representatives to introduce legislation expanding the role of the PSDA, such as incentives for physicians from the private sector to help with AD planning.
To date, young adults have been largely overlooked when it comes to end-of-life planning. With sudden deaths becoming increasingly common in young adults, the benefits of having a clear set of instructions for critical care become more critical than ever.
Ilona Golynker is a Neuroscience PhD student in the Perelman School of Medicine at the University of Pennsylvania.