During the first week of March 2020, our Conversation of Your Life (COYL) county task forces were preparing community events leading up to National Healthcare Decisions Day, organized to inspire community members and health care professionals to learn more about advance care planning. But then word of people dying across the globe from a novel coronavirus became front page news and many of our volunteers suggested that we pause our work because talk of advance care planning might “hit too close to home.”
Yet in less than a week, opinions flipped, and calls were coming in for us to actually redouble our efforts as people needed immediate guidance on how to create advance directives, proxy directives, and POLSTs.
Just as our work was most needed, though, the very places where we brought people together for conversations and education — such as libraries, senior centers, and places of worship — were suddenly shutting their doors. We quickly pivoted and moved all our work to a virtual platform and continued to facilitate compassionate and thoughtful conversations, and to educate people on how to effectively document their advance care wishes.
Our work became an essential part of the public health response to the COVID-19 pandemic.
Our COYL volunteer task forces include trusted members of communities, such as mayors, public health officers and board members, other county and municipal officials, religious leaders, librarians, and health care professionals. These passionate volunteers stepped up and contributed their time and expertise to enable us to continue our important work throughout the pandemic. Moreover, many of them ramped up their own efforts to train health care professionals about the POLST form and how to fill out the document with patients and family members via telehealth, if necessary. Dr. David Barile, the founder of the Goals of Care Coalition of New Jersey, and Dr. Stephen Goldfine, held daily 30-minute webinars for weeks to share this critical information so patients could get the care they wanted — no more and no less. Dr. Vikranta Sharma, along with Dr. Barile and Dr. Goldfine, worked with the Quality Institute and Rutgers Project ECHO to train nursing home staff from over 225 facilities on advance care planning.
The pandemic shows us that medical emergencies and serious illnesses are not always predictable and having these conversations and directives in place makes difficult situations better for everyone involved. Back in 2019, the state passed an important law that requires the Commissioner of Health to establish a public awareness campaign to foster community-based discussions around advance care planning and end-of-life care. Unfortunately, this mandate was unfunded, and the pandemic delayed its implementation. But now is the time to move forward with this initiative, and we know that COYL could fulfill the requirements of this law.
We are now planning our COYL activities for the rest of 2021 and 2022. I would like to invite you, our members, and other interested community partners to engage with us in this work. For now, we are keeping our programming virtual. We plan to launch a virtual campaign with about one webinar per month starting in November and running through April. The series will pay special attention to caregivers, including how to address your aging parents’ needs and expectations, setting caregiver boundaries, how to have difficult conversations with those who are important to you, and special considerations for people living with Alzheimer’s disease or dementia. We also plan to expand our specialized programming and increase the diversity of our materials and programming.
One such population is the Veteran community, which has unique health care needs particularly at the end-of-life. New Jersey ranks 19th in the country in total number of veterans (over 400,000 veterans) and first in the country in number of veterans aged 65 and older (about 229,000 veterans). Most veterans receive health care from within their communities. It is crucial that this population receive the education and support they need to ensure their end-of-life wishes are honored. In addition, we intend to develop COYL materials in additional languages and adapt them to meet the needs of different cultures.
If you would like to join us or learn more about COYL, our Director of Quality, Adelisa Perez-Hudgins, MSN, RN, can help.