End-of-life care plan can ensure wishes are respected

(The Tennessean, November 4, 2013) By Sen. Bill Frist, M.D. and Manoj Jain, M.D Fifth of six parts that will appear this fall

“I would never have my mother, who has cancer, go through this,” a hospital case manager in her 50s says. “I would never have her be strapped to the bed. Never have a feeding tube. Never have an endotracheal tube.”

The case manager is one of thousands of Memphis employees who are experiencing a paradigm-shifting training session on the importance of having an end-of-life plan.

This novel pilot effort is being led by Healthy Shelby, a public-private effort that is focused on better health, better health care and lower costs. End-of-life care is one of Healthy Shelby’s key areas of focus.

Jeri Ashley, the administrative director at Baptist Trinity Home Care and Hospice, is one of several trainers conducting the sessions. She is sharing the Five Wishes end-of-life planning tool with working adults across Shelby County and changing the dinner conversation about end-of-life care planning.

Experts have told us that if end-of-life care is to improve, whole communities need to change. This is what happened in La Crosse, Wis. The community took on a huge end-of-life awareness campaign, and now it has become the best place to die, because patients’ choices are known and respected. In La Crosse, 96 percent of all adults who die do so with an advance directive.

Can this happen in communities across Tennessee?

Changing the culture
Debra Bartelli, project director for Healthy Shelby, thinks it can.

“Today, only 20 percent of patients admitted to the four largest Shelby County hospitals have an advance directive or advance care plan,” she said.

To start a communitywide culture change, Healthy Shelby began by targeting those closest to the health care setting: hospital employees.

They launched an employee education plan in October 2012. About 20,000 hospital employees across the city have been educated on end-of-life planning using the Five Wishes resource, and 60,000 copies of the Five Wishes tool have been distributed to patients and their families.

The initial employee training showed great success, so a curriculum and resource booklet was developed for working adults. The training was expanded to physician offices, law firms, pastors and nearly 6,000 Shelby County employees, including representatives of the sheriff’s department and human resources groups from the University of Memphis.

An estimated 35,000 employees have been trained thus far by Healthy Shelby. Bartelli is ambitious. She hopes to reach 100,000 by the end of the year.

Healthy Shelby isn’t alone in its work. There are community campaigns across the state and the country that are changing the culture of how we talk about death, how we prepare for death and how we ultimately die.

The Tennessee End of Life Partnership holds statewide workshops to educate and empower patients, families, and health care and other professionals.

Nationally, Aging with Dignity designed the Five Wishes tool, which is used in 42 states. Death Over Dinner encourages individuals to host open conversations over a meal about the end of life — what they have experienced and what they want for themselves. The Conversation Project offers tools for starting an end-of-life discussion via free download. Communities are promoting end-of-life discussions.

“The process is life-changing for people,” Ashley says.

Of the Shelby County employees who have attended a workshop, Ashley estimates that 40 to 60 percent have completed or are working on their Five Wishes documents.

“That was profound to me! … People are getting it,” she said. “They are understanding the importance of preparing ahead.”

Personal stories
For the Healthy Shelby initiatives, one measure of success is tracking the percentage of patients who have an advance directive when being admitted to the hospital. In less than a year, Bartelli says, the numbers have risen from about 20 percent of patients with an advance directive to 26 percent of patients.

So what works? What motivates an employee, a patient, a family member or even a doctor to initiative the difficult conversation about end of life?

“One thing that comes up at every training is the stories,” Ashley says. “I could stand up there and talk all day long, but the one thing that changes it is the employee who says, ‘You know, I’ve been through this with my loved one, and it was horrendous. And yet this (other) person in my life had (an advance directive), and I can’t tell you how easy it was, how different.’ ”

For the case manager and her mother, a different experience is assured. Through thoughtful conversations, they are preparing an end-of-life experience that respects their choices.

Next: Stories from families about end of life.

Bill Frist is a heart transplant surgeon and former U.S. Senate majority leader. Manoj Jain is a Tennessee doctor who writes for The Washington Post.