End of Life Planning: The Difficult Conversation Most New Jerseyans Never Have

A growing group of Garden State organizations are dedicated to helping residents have the death they want, away from hospitals and free from costly medical treatments

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Millions of New Jersey residents have witnessed firsthand the difficult decisions surrounding end-of-life care as they’ve watched a parent or loved one die — all too often in a hospital or nursing facility, not in their bed at home or in a way they had hoped life would end.

But while most residents have thought seriously about their own death, a majority has not taken steps to make their wishes known in writing or through a conversation with loved ones, studies suggest. Experts agree this is a particular concern in New Jersey, where chronically ill patients are more likely to receive costly and intensive medical treatments in the last six months of their lives, instead of opting for hospice or palliative care, which is focused on comfort.

A growing awareness of the disconnect among Garden State residents has prompted a number of organizations in recent years to explore new ways to help patients better understand their options and prepare for their own death. They have also joined advocates from across the country to mark annual National Healthcare Decisions Day — held this year on April 16 — and spread the word about the need to think, and act, in advance.

Media reports about a Wisconsin town that aggressively promoted end-of-life planning also helped convince leaders at the New Jersey Health Care Quality Institute to launch a unique pilot program in three municipalities in late 2014. The “Conversation of a Lifetime” pilot, coordinated through the Institute’s Mayors Wellness Campaign, involves local officials, church, and community groups in Tenafly, Princeton, and Gloucester Township in a quest to educate the public about its choices and responsibilities.

[img-wide:/assets/16/0421/1749]“Each community has focused on this in a little bit of a different way, and we’ve been giving them resources and support,” NJHCQI President and CEO Linda Schwimmer said. In addition to staff assistance, the institute has provided films, books, and other materials to help people understand their options.

“We’re trying to make this a less technical, less clinical discussion — trying to change the culture around death,” Schwimmer continued. “It’s about engaging the community so people can be empowered to have the conversations with their loved ones and their [healthcare] providers.”

NJHCQI partnered with Rutgers-Eagleton on a poll conducted earlier this month that confirmed six in 10 believe it is important to plan end-of-life care, but six in 10 have also failed to do anything concrete to protect their wishes. Perhaps not surprisingly, seniors are more likely to have thought this through and taken action; millennials generally have yet to concern themselves with the process.

The institute’s work is not alone. Samaritan Healthcare & Hospice, a 36-year-old organization in Marlton that provides hospice and palliative care throughout South Jersey, has run public workshops at libraries, Rotary Clubs, and other civic spaces for several years. Next week it will host screenings of the PBS film, “Being Mortal,” followed by guided discussions. It also works with doctors to help them become more comfortable guiding patients through the difficult discussions surrounding death.

Samaritan believes everyone should create an advance directive, a document that outlines a patient’s wishes for medical treatment should they become incapacitated, before they get sick, and communicate these wishes clearly to a loved one. But it is not just about death: The organization also stresses the importance of enjoying the present to help reduce regrets when the end does come.

“This is a subject that is just taboo and needs changing,” said Joanne Rosen, Samaritan’s vice president of marketing and public affairs, who helped build the “Timely Conversations” program and has worked with the NJHCQI program in Gloucester Township. “When people think of advanced-care planning, they think of death and dying. And nobody wants to think of that,” she added. “That’s why we are trying to frame it as the need to live now.”

Also timed to National Healthcare Decisions Day, a coalition of seven hospital systems in New Jersey and Pennsylvania last week announced a public relations campaign with a website, “Your Life Your Wishes.” AllSpire Health Partners — which includes Atlantic Health System in Morristown, Meridian Health in Neptune, and Hackensack University Health Network — aims to help people understand that advanced directives “aren’t just for people who are really sick or elderly,” explained Dr. Amy Frieman, Medical Director of Palliative Care at Meridian Health.

“Families and loved ones don’t know what people want and they are left in a very difficult position to make really hard decisions,” Frieman said. Advance directives are “really a gift to the people you love.”

“The goal is to normalize the conversation,” she said, “and to make it something that isn’t just about sick people.”

When it comes to actually recording ones wishes, experts said some formats are better than others. A standard advance directive outlines requests for medical treatment. Rosen, with Samaritan, favors a “Five Wishes” document that is legal in New Jersey and more than 40 other states; this goes beyond the basic directive to address questions of comfort, the nature of care, and family communication.

Five years ago, Gov. Chris Christie signed a law that adds another option — Practitioner Orders for Life-Sustaining Treatment (POLST) — which allows patients to record additional instructions for specific end-of-life care. Experts said this form is intended largely for those with chronic conditions or serious illnesses that requires significant treatment.