Just over one in three adults has an advance care plan in place and this figure is halved when looking at adults under the age of 55. While advance care planning (ACP) is a term and process typically associated with the terminally ill or elderly, the process of understanding care options and discussing desires for one’s own care is empowering and a vital step in protecting autonomy at all life stages.

Lack of education and awareness is one of the key barriers to advance care planning and, among young adults, this barrier is compounded by an unwillingness to acknowledge aging and death as inevitabilities of life. During a series of focus groups conducted among undergraduate and graduate university students in Pittsburg, PA, most participants named ACP as a prerequisite for autonomous, fully capable, adulthood; yet, when given the opportunity to create an advance care plan, one participant responded: “Hell no! At this point in my life, I don’t want to be thinking about death.” This sentiment was echoed among focus group respondents and demonstrates a key misunderstanding which limits ACP among all age groups – too many individuals associate advance care planning with death; rather than life on one’s own terms.

By creating a care plan, with the understanding said plan is subject to change with an evolving life and needs, young adults take a more active role in their own health in the present and save themselves stress and uncertainty later in life, when health conditions and care needs may be more urgent. For young adults without serious health concerns today, the primary focus of ACP can be in designating a surrogate decision-maker. While young adults may not have a deep understanding of specific interventions they may need with time, designating a trusted surrogate and having value-based conversations with this individual is an important first step. Especially following the COVID-19 pandemic and increased uncertainty for the health and well-being of otherwise healthy and young individuals, medical professionals are urging young Americans to take control of their care by documenting wishes in an advance care plan.

Creating an advance care plan allows individuals to reflect on values, relationships, and health status. These conversations about your own values and care goals can also be an opportunity to discuss ACP with those you care about. Ask your partner, parents, siblings, grandparents, and all those you love most about their goals for care and learn if there are ways you can help them remain aligned with those values in case of a medical emergency; you may even prompt others in your life to document an advance care plan and take back control of their health.

Too many barriers to education and resources for advance care planning exist today. Focus group respondents expressed strong interest in learning more about options for advance care planning, and 21% of individuals incorrectly believe ACP is synonymous with a last will and testament. We need to begin associating ACP with the living; conversations about future care and planning should be built into our health systems, such that all Americans have access to the resources they need to make an informed plan before it is too late. If you are interested in learning more and getting started with advance care planning, check out our blog post, Advance Care Planning – Needs and Resources. Plus, as a member of the Aging at Home Association, you and your immediate family members have access to discounted estate planning services and documentation through our partner, Trust & Will.