On that day, the graduate students leaned forward a bit closer to hear what was being said; their eyes widened at the stories they were told, and their questions, though hesitant, were poignant and profound. The topic was death.
In front of the class that day were five folks with enough lived experience to speak with authority and insight on thinking and planning for the end of life: a retired nurse-anesthetist dying from a terminal lung disease, an ordained minister who trains pastoral counselors, a former nurse who cared for her husband with Alzheimer’s disease, a retired business executive who advocates for plain language from healthcare providers, and an environmental activist with expertise in Green Burial. These five educators represent some of the members of the Senior Resource Team focused on End-of-Life issues in Orange County, NC. Among other messages they shared with the class were that views about death and dying evolve as life lengthens and that the expertise gained over a lifetime warrants attention in the process of planning for dying.
The End-of-Life Senior Resource Team (EOL SRT) was born from the Project EngAGE senior leadership training series sponsored by the Orange County NC Department on Aging. This team has hosted more than 15 community events over the past five years. Their work, aimed at reaching people of all ages, seeks to normalize conversations about dying. As one of the leaders of the group noted, “I think the most important focus of our work is getting people and their families more comfortable talking about end-of-life issues…and helping them take the next steps of completing their end-of-life documents, such as the Five Wishes booklet.” (S. Evans, email conversation 12-9-2020)
The work of the group balances the pragmatic and informative with the spiritual and ethical. They have hosted panels on Death with Dignity and sponsored seminars on completing living wills and other end-of-life documents. They also host book clubs, fireside chats and community conversations with ethicists, medical and legal experts, members of the clergy, and family members who have had to make difficult end-of-life decisions for loved ones. In the months prior to the COVID-19 pandemic, the EOL SRT sponsored an educational session on Voluntary Stopping of Eating and Drinking (VSED – see information offered by Death with Dignity) and hosted a sequel to an earlier community conversation focused on having end-of-life conversations with health care providers. During the pandemic, the group also prepared COVID-planning tools to guide people through emergency planning and serious illness. (https://partnershipsinaging.unc.edu/resources/#COVIDPLAN) Each of their programs draws loyal repeat attendees who have found both benefit and comfort, as well as newcomers seeking information after hearing about the group’s offerings.
The UNC Partnerships in Aging Program salutes the innovative work of the EOL SRT of Orange County, NC, and in honoring them, would like to share some of their words of wisdom directed to older adults dealing with end-of-life considerations who are talking with their healthcare providers (note: this list is evolving-we offer here a sampling of their wisdom from the class dexscribed above):
- Ask me, before giving me information, what I understand, and what I most want to know.
- Read, before my appointment, my healthcare documents. I spent a lot of time thinking about the various issues, discussing them with significant others, and making them available.
- Don’t assume, even if I have related work experience, that I hold knowledge about all things medical. Even if I am knowledgeable, I may not know the latest terminology or be in a position to think about them clearly.
- When you offer a new opinion or procedure, please know that I will need time to think about it and discuss with my family, friends, and/or health care proxy.
- As I age, I have an expected life span that is shorter and a list of ailments that grows more serious as the list becomes longer. When I encounter a new medical situation, I need to discuss:
- How long my recovery may take
- Whether or not my expected recovery will exceed the minimum activities/capabilities that are essential for making my life worth living
- The likely consequences of my end-of-life choices
- Remember, please, that the choice for me isn’t as much about restarting my heart as it is about how my life will change if you do restart it.
(End of Life Senior Resource Team of Orange County UNC occupational therapy class discussion, 2019)
©2020 JWomack: Professor Division of Occupational Science & Occupational Therapy, Dept of Allied Health Sciences, SOM, UNC-Chapel Hill