Elephant in the Room
Begin the Conversation initiative tackles difficult subjects
“PEOPLE DON’T WANT to talk about death. We have a chance to live every day, but only one chance to die, and I want to do it well,” says KIMBERLY PAUL (left), vice president of communications and outreach for LOWER CAPE FEAR HOSPICE AND LIFECARECENTER.
That’s why she created the program, Begin the Conversation, which outlines a method for letting loved ones know how you want your end-of-life to go. With advance directives stating wishes for how you want your care to be and a health care power of attorney stating who will be responsible for directing those wishes, individuals can exercise some control.
A study from the Johns Hopkins Bloomberg School of Public Health found that two-thirds of respondents did not have advance care directives and were uncomfortable having end-of-life conversations with loved ones, according to Begin the Conversation materials. Yet most people have definite wishes about what kind of medical care they would want.
Begin the Conversation started in 2008 when at Lower Cape Fear Hospice, staff noticed that patients had not even begun to prepare documents for end-of-life care. And young women, such as Terri Schiavo, had made an impression on the entire country. At the age of twenty-seven, Schiavo suffered a cardiac arrest and due to lack of oxygen, suffered brain damage. She existed on a feeding tube for fifteen years while family members fought legal battles over her plan of care.
“We wanted to create an awareness campaign,” Paul says. “In 2009, we launched the program in multimedia. Begintheconversation.org is a separate website because most who are planning are not ready for hospice at the moment and wouldn’t want to go to the website.”
Begin the Conversation includes a fifty-page workbook with scenarios and definitions of advance care planning. There has been a media push and with a background in film, Paul produces all the television commercials in-house. Families go through questions to consider, such as, where are the insurance papers? It’s designed for anyone over eighteen, since that is the legal age, and parents may no longer have authority in an emergency.
In a talk at the TEDxAirlie event in March, Paul spoke to the elephant in the room, urging listeners to think about their own death. According to her program, research shows that most people want to die at home but have no directives in place. Not only is it important for the person who is at end-of-life, it’s a gift to loved ones to have these things in place, Paul says. Making critical decisions for someone else at that point is difficult.
The Begin the Conversation program has been well received, winning a Carolinas Healthcare Public Relations and Marketing Society Silver Wallie Award in the mixed media campaign category in 2012. In 2013, it won honorable mention for Best Branding/Re-Branding and honorable mention for Best Social Responsibility Campaign/Initiative in PR Daily’s 2013 Nonprofit PR Awards competition.
Lower Cape Fear Hospice brings Begin the Conversation to other communities, businesses, or organizations through a leasing agreement, and it has found its way to areas beyond this region.
An international program called Death Cafe started in England and spread throughout Europe, North America, and Australasia, according to the website. People get together to have refreshments and talk about end-of-life issues. There is no agenda, so it’s an open-ended format.
Paul says Lower Cape Fear Hospice participated in one Death Cafe, and while it’s a no-pressure discussion, some are turned off by the name. Being honest can be disarming to some. “Physicians need to be candid about the situation,” Paul says.
“Physicians in some cases overestimate life expectancy by 500 times. I try to encourage individuals to reclaim that (ability to be candid). People who don’t want to hear it, and physicians who can’t deliver it, take that away. They end up in the ICU, and there is no closure.”
Begin the Conversation has paired with other organizations such as National Healthcare Decisions Day, initiated by Nathan Kottkamp and celebrated every year on April 16. It encourages everyone to complete or review their health care plan on that date.
“We’re doing a pilot now with New Hanover Medical Group-NHRMC Physician Group,” Paul says. Now that Medicare will reimburse physicians for talking with patients about advanced care planning at their annual checkup, Paul’s hoping to see an uptick in conversations.
After seventeen years in the business, Paul has seen it go different ways. Her grandmother wanted to die in the hospital, and she tried to talk her out of it until she realized it was her wish. “I was projecting my wish on my grandmother; then I was okay with it,” she says.
As for herself, Paul says, “I get it that funerals are for the ones left behind. I want my memorial right in the house before I die … a party where they laugh about the things I’ve done. I have five friends who will go on a trip with my life insurance and spread my ashes in five different places.”
Begin the Conversation meetings are every third Friday 10 a.m.-noon at the LifeCareCenter. It’s an effort to bridge the disconnect and interact on the issue.
“Sometimes we trade quality for quantity,” Paul says. “Sometimes prolonging life is prolonging death … I’m teaching people how to live, how to connect. What are you waiting for?”
To view more of photographer Terah Wilson’s work, go to facebook.com/timelessfotographie.