It’s been a little more than seven years since New Jersey’s Practitioner Orders for Life-Sustaining Treatment law, or POSLT was signed by former Governor Chris Christie, empowering patients to work with their preferred medical professional to create advance directives. But still people end up in hospitals with no living will. The Governor's Advisory Council Report on End of Life Care says more than a quarter of adults, including seniors, have no documentation available if they're not able to make healthcare decisions for themselves.
“It’s never ever too soon to make these decisions ahead of time,” said Christopher Kellogg, founder of Nightingale NJ, an Eldercare Consulting firm. He says his clients have fears in conversation, but most of the time it’s not death.
“What they are afraid of is not living in a place that they want to live in and being able to receive the care, the pain management that they want and need,” he said.
Which Medicare data suggests could be an issue for families in New Jersey. Analysis from The Dartmouth Atlas Project shows that patients experienced more aggressive end-of-life care without evidence to suggest any medical benefit.
“We are failing at this as a state,” said New Jersey Department of Health Commissioner Shereef Elnahal. He suggests there isn’t enough end of life training for medical providers.
“I got one one-hour class on how to approach difficult discussions on how to approach difficult decisions in health care,” he said. “And they weren’t necessarily just focused on end of life discussions. That is a big system issue because we haven’t invested enough in education and in the proper level in medical training throughout. Not just in medical school but throughout residency and even after in continuing medical education.”
Advocates for improving end of life care in New Jersey are stepping in to create new ways to start the conversation. Michael Maron, President of Holy Name Medical Center in Teaneck says they’re close to piloting a program that creates a living will online.
“You video tape yourself in your own voice, with your own inflection, and your own emotion. This all then gets forwarded to who you want to be your proxy. The beauty of that is when family or clinical controversy arises and people want to read the text and interpret differently, we turn on the video and say why don’t we listen,” Maron said.
Some organizations take a community-based approach to create a comfortable setting for end of life discussions. Adelisa Perez with New Jersey Health Care Quality Institute works with townships across the state.
“We utilize community book reads, we utilize facilitated film screenings, panel discussions. Sometimes we have an author come in,” she said. “There’s game nights where we use go wish. It’s a card game that helps participants prioritize end of life wishes. It’s really focused on taking these conversations outside of the hospitals, and outside of the providers office. Where they really need to be happening much earlier in the community setting where residents feel comfortable having these kinds of conversations.”
The Governor’s end of life planning advisory council report lays out a roadmap to create a more comfortable life for New Jersey residents in their final days. But another issue the report warns of is no clear vision of how the state’s healthcare system will meet the need, with an aging population and increased prevalence of people living with serious illnesses.