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‘Can we talk?’ The conversation you need to have with aging parents — and how to get started

The end of life isn’t something we like to think about — let alone talk about.

But when families fail to have that conversation, they can end up facing agonizing medical decisions without any idea what their loved one would have wanted them to do.

A new initiative in New Jersey wants to spare families from that trauma by showing them how to have conversations about end-of-life care long before a health crisis occurs.

The “Your Decisions Matter’’ program is being launched this fall by SAGE Eldercare, supported by a three-year grant from Atlantic Health System’s Overlook and Chilton Medical Center Community Advisory Boards.

The goal is to encourage family members to talk with a parent, grandparent or other loved one about the kinds of care they wish to receive in the final days of of life, before any serious medical issues arises and they’re no longer able to make decisions about their own care.

The initiative here in New Jersey has forged a community member relationship with a national organization called The Conversation Project, based in Boston.

Angela Sullivan, executive director of SAGE Eldercare in Summit, says with the growing demographic of adults living into their 70s, 80s and 90s, and the prevalence of chronic diseases that can strike in later life, conversations like these have become more crucial than ever.

“This is something that’s coming all across the country,” Sullivan says.

“With the growing older population, we’re all thinking about this. So let’s sit down around the table and have that talk.

If you’re thinking about it and don’t know how to do it, we have some tools to help you through that process.”

Experts says having the conversation gives older adults and their families peace of mind in knowing that their wishes will be followed, particularly in situations were a person becomes unable to advocate for themselves.

“The wrong time to be trying to make those decisions is when your loved one is in a critical care unit,” says Dr. Alan Lieber, president of Overlook Medical Center.

“Right now, we’re doing it with families in crisis. This is about getting conversations going in the community so when people find themselves in difficult situations, they know what their loved one would want.

Our goal is to create as many of these conversations as we can so people can make better decisions.”

Most families understand the importance of talking about these sensitive matters, but the conversations often aren’t happening.

While 92 percent of people agree that talking with their love ones about end-of-life care is important, less than a third have actually done so, according to a national survey last year by the The Conversation Project.

Another survey, done by the Kaiser Family Foundation in 2017, found that 97 percent of respondents said it’s important to put their wishes in writing — such as having a “living will” — but less than 40 percent have done so.

“We’ve found there are a lot of reason why families are afraid to have the conversation or are hesitant,” says Nina Tiger, project coordinator for the Your Decisions Matter program. “They just don’t know how to start the discussion.

Or don’t want to scare family members.”

According to The Conversation Project, other reasons people may give for avoiding the conversation include:

They’re too busy.

They feel it’s “not the right time because no one is sick.”They’re afraid that talking about it will lead to something bad happening.

And in our society, there’s a deep cultural discomfort around the subject of death. The idea of our own death is not something we want to confront, so issues around it go unspoken.

One of the goals of the program is to remove that taboo by giving families gentle, constructive ways to start the conversation about end-of-life decisions.

“What were really talking about here is cultural change, a change in attitude,” says Frank Macioce, chairman of the Overlook Community Advisory Board.

“Cultural change involves broad community involvement.”

Your Decisions Matter will host workshops in comfortable, informal settings like coffee shops, YMCAs, libraries or churches.

Organizers also are considering events like movie screenings, game nights or panel discussions.

At the workshops, participants will receive a “Starter Kit” that offers them tips and tools on how to prepare for and begin an ongoing conversation.

“To me this is a critical service that we provide to the community because it’s going to enable us to facilitate conversations that are very difficult to have,” says Stephen Kass, vice chairman of Chilton Medical Center’s Community Advisory Board. “No one likes to talk about what their end of life might look like.

And that’s precisely why it’s important to do this. The last place you want to be when you start these conversations is when you or a loved one is an in-patient or in crisis.

And families shouldn’t think of it as a one-time discussion, Tiger adds. “It’s a lot of conversations over time,” she says.

“And what you think right now might change over time. It’s about making it OK for families to talk about it.

The program also plans to follow up with people afterward, and offer them additional help and resources, while also tracking success stories and sharing those with the community. Organizers say their goal is to make this a community effort in the broadest possible way, respecting the various cultures and beliefs that reflect the diverse population of New Jersey.

In recent months, the organizers of the program have been doing workshops and getting feedback from health-care providers and people who are interested in having conversations in their family. That input has helped them shape the effort going forward.

In feedback forms gathered after these sessions, one person said, “I’ve been a nurse for 20 years and no one has ever talked about the topic in this way.” Another said: “It got me thinking how important it is to have the conversation with my Dad.

“Working with patients at every stage of life, we’ve found many families still struggle with how to talk about a loved one’s wishes if they become seriously ill,” says Stephanie Schwartz, president of Chilton Medical Center. “Partnering with community organizations such as SAGE Eldercare allows us to guide families through these difficult times and provide them with the right tools and support to make more informed decisions.

To learn more about Your Decisions Matter or to find out how you can prepare to have this important conversation in your own family, you can:

Send an email to: yourdecisionsmatter@sageeldercare.org

Visit the program website at: www.

sageeldercare.org/services/yourdecisionsmatter

Check out the program’s Facebook at: https://www.

facebook.com/yourdecisionsmatter/

Call for information at: (908) 598-5511

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