Just talk about it: end-of-life conversations offer comfort and guidance
Last summer, my sister was diagnosed with advanced lymphoma and for the first time I was faced with the horrifying fear of losing her. Sarah is the glue that weaves our family together. I have no other siblings. She is my longstanding, forever trusty soul mate and confidant.
This distressing news was accompanied by what felt like an untimely curse. Just as my sister was fighting for her life and entering a world of incessant pills, doctors’ visits and chemo treatments, through my work at the Partnership for Better Health, I was being called to help lead a new end-of-life planning initiative, called Closure.
Developed by the Jewish Healthcare Foundation in Pittsburgh, Closure brings together a group of community leaders, clergy, health care professionals, policymakers and caregivers for a series of discussions about end-of-life care. The goal is to create a plan of action for improving a community’s understanding about choices and quality of care for individuals and their families. Closure recognizes that every community and culture has different values, expectations and challenges at the end of life. It strives to recognize and honor individual choices within today’s health care environment.
This would be brilliant and much needed work but given the dreadful timing of it in my own life, my first thought was to abandon the initiative entirely. How would I hold myself together in a professional setting if, underneath it all, I was hopelessly dying of fear about losing my sister? It would just be too much.
Yet in the months ahead, my sister’s health dramatically improved. While her doctors continue to monitor her, the lymphoma is gone. By the time we were ready for our first Closure kick-off session at Carlisle Regional Medical Center last January, Sarah was healing at home and my whole family was recovering from a dreaded dose of reality. Life, for all of us, is a fragile gift— never to be assumed and worthy of ongoing attention, discussion and planning.
I have learned a great deal from my journey with Closure, and our community’s success with the initiative has blossomed into Partnership for Better Health’s support of a new Harrisburg Closure Initiative this fall. Chaired by Mr. Bob Haigh and Dr. Arlene Bobonich, more than 50 groups are represented. Major partners include Capital Blue Cross, Hospice of Central PA, PinnacleHealth and The Foundation for Enhancing Communities. Together, we recognize that there is much that we can do to improve decisions and support quality of care for all members of our community.
We are working to share valuable planning tools with the public, like Living Will templates and advanced directives. Last week, my husband and I sat by the warm wood stove in our kitchen and took 10 minutes to complete The Five Wishes, a simple form that functions as a living will. There are clever online conversation-starter tools like Death Over Dinner and The Conversation Project. You may also enjoy Go Wish, an online card game about end-of-life preferences— my family played it this summer. Additionally, the Harrisburg Closure Initiative is creating a web-based clearinghouse to share resources and information with the public. Visit www.ClosureInitiative.org.
Have you talked with your loved ones and doctor about your wishes regarding the end of life? Do they understand and support your plans? With insurers now moving to reimburse health care providers for meaningful end-of-life conversations and health systems transforming to deliver patient-centered care, more physicians are ready to embrace your goals.
How do end-of-life issues affect you and what more might we do to support our community? We’d love to hear from you.
Becca Raley is executive director of the Partnership for Better Health. She serves on the Foundation for Enhancing Communities’ Task Force on Aging & Health Disparities and is an active member of the Pennsylvania Health Funders Collaborative and the Pennsylvania Coalition for Oral Health. She is a member of the Penn State Hershey PRO Wellness Center’s Advisory Council and the Rotary Club of Carlisle. She co-chairs the Pennsylvania Bureau of Cancer Prevention and Control’s Stakeholder Leadership Team of the Cancer Advisory Board.
