NJ to Have Internet Registry for End-of-Life Wishes

By Brenda Flanagan

If you’re in an ambulance, maybe you can tell the EMTs your end-of-life wishes. But maybe you’re too sick to talk. And now you’re facing your final days without any document to guide your doctors or your family.

“People are not prepared. They’re not having the conversation, right? In the end, it’s a fate we can’t escape. We’re all going to die at some point,” said Holy Name Medical Center CEO Michael Maron. “It is very hard to talk about.”

New Jersey’s Hospital Association wants to make it easier. Today it signed a memo with the the state Department of Health to create an internet registry for residents’ end-of-life wishes, an electronic database called emPOLST: Practitioner Orders for Life Sustaining Treatment. You’ll fill it out online, your doctor will sign and upload it. And health care providers will access your file from a laptop or a smartphone.

“So as you’re treating that patient you go in there — boom! If they have a POLST form, here it is. We know exactly what they need. And secondary, the patient — probably more importantly — they’re empowered with their POLST form now, to take that POLST form and have it on their iPhone and better yet make that available in a secure way. All this is very secure — that’s important — to all their loved ones,” said New Jersey Hospital Association Chief Information Officer Joe Carr.

At the scene of an accident, the ambulance arrives. They’re going to be able to see your end-of-life wishes. “That’s exactly right. And that’s what’s so critical — because then you’re ensuring your wishes are being honored,” said New Jersey Department of Health Commissioner Cathleen Bennett.

“My sister had end-stage Parkinson’s. And when it got to the point she couldn’t swallow any more, they offered her a feeding tube and she turned it down,” said Bob Orozovich, Villa Marie Claire Hospice volunteer.

Orozovich says his sister chose to live her last days at a hospice called Villa Marie Claire in Saddle River. It’s a 20-bed facility affiliated with Holy Name Medical Center in Teaneck. But hospices offer comfort care.

“It’s a place to come to go out in dignity and peace,” Orozovich said.

But many don’t make any choice, so in New Jersey, more than 25 percent of deaths occur in hospitals. That’s more than in 46 other states, according to America’s Health Ranking 2016 report. Yet while 65 percent of New Jersey seniors have written end-of-life directives, half of 50- to 64-year-olds do and the percentages plummet for younger New Jerseyans. Medical officials hope more people will fill out directives electronically.

“When that is absent, the chances of you ending up in an ICU on a ventilator, intubated with all sorts of interventions occurring — that are not very personal and don’t really add to quality of life in those final weeks and months — happens. And it happens too often,” Maron said.

The program will start small — four pilot projects for a few months — before a statewide launch will let every New Jersey resident register their end-of-life directives online.