“It’s always too early until it’s too late,” Professor of Social Work and Family Studies Mary Carlsen said, surveying her audience.
Carlsen and a group of students from her Directed Undergraduate Research (DUR) class, “Living and Dying: Explorations with Young Adults,” gave a presentation April 11 in Viking Theater. The talk highlighted the importance of Advanced Care Planning (ACP) – plans made by a person for caretakers to follow should that person become unable to speak for themself due to illness or injury – and posited that more young adults should engage in ACP and conversations about death.
Kali Weiss `19, a student researcher, said conversations about ACP can be difficult and stressful but are necessary for all adults. Weiss outlined the ACP process, which begins with completing a healthcare directive, “a written plan for loved ones and healthcare providers to follow.” A person’s healthcare directive should be based on that person’s “values and goals related to quality of life,” Weiss said.
Copies of a person’s healthcare directive should be distributed to their loved ones, healthcare providers and anyone else likely to be present during a time of illness. Following the completion of their healthcare directive, a person will then select an agent who will make medical decisions for them if they cannot.
Shannon Holder `19, another student researcher, said previous research suggests young adults benefit from ACP by gaining a greater sense of agency and aligning the care they will receive with their goals and values, thus avoiding “unwanted interventions” and “unwanted suffering that often accompanies end-of-life-care.”
Multiple surveys have found that even though the majority of those surveyed said ACP is important, most had not actually engaged with it, Holder said. Carlsen’s team found different explanations for this phenomenon, including that conversations about ACP “aren’t normalized in American society at large,” fear of mortality, the feeling that “I’m too young to discuss anything about my own death” and the fear, held by young adults in particular, of offending someone who is not chosen as a person’s agent, Holder said.
Christopher Prokosch `19, another student researcher, discussed the data Carlsen’s group gathered on campus. Campus research mainly focused on three questions: whether or not students are talking about death, how students are talking about death and how conversations about death can impact students. The group collected data through tabling, post-it notes, a survey and interactive window displays. Among the students who contributed data, 77 took a demographic survey. Of those who completed the survey, about twice as many were female than male, and 23 of the 77 identified as agnostic or atheist. This demographic data is interesting and may be useful for determining who is and is not having conversations about death, Prokosch said. The data will be further analyzed by the group and presented on May 13.
There are a variety of strategies and resources people can use to help with conversations about death, student researcher Zipi Diamond `20 said. Diamond recommended reading books about the healthcare system, like “Being Mortal” by Dr. Atul Gawande and “The Conversation” by Dr. Angelo Volandes.
Before taking questions, Professor Carlsen ended the presentation with a final recommendation.
“We have a short form which we encourage everybody age 18 and up to take and fill out,” Carlsen said. “That is where you can choose an agent to make decisions for you.”