BOSTON — When Ellen Goodman's dad was dying of terminal cancer at age 57, his wife bought him a set of luggage as a birthday gift. Denial, says Goodman, a retired Pulitzer Prize-winning columnist, ran fiercely through her mom's veins. And when her mom was dying herself decades later, Goodman was flummoxed about what decisions her mother would want her to make about end-of-life care.
"End of life" was one of the few conversations they never had while they still had time and her mom was well enough.
"The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death," Goodman later wrote. "I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it. And so I never want to leave the people I love that uneasy and bewildered about my own wishes. It’s time for us to talk."
After her mom died, Goodman and Len Fishman, the CEO of Hebrew SeniorLife, launched "The Conversation Project" in partnership with the Institute for Healthcare Improvement. It's an web-based campaign and resource depository designed to smash myths and break barriers that keep people from talking about how they want to die.
You have to talk, said Goodman, if you want your dying wishes to be granted. It is "what matters to you, not what's the matter with you."
Wishes and reality conflict
Not knowing a loved one's wishes made Goodman one of a crowd facing similar challenges. A California HealthCare Foundation survey in 2012 found that 60 percent of people say it's "extremely important" that their family members not be burdened by making tough end-of-life decisions for them. But a very similar number, 56 percent, had not communicated their wishes.
Those aren't the only oddly inverted numbers when the topic is death. The Centers for Disease Control and Prevention found in 2005 that 70 percent of people say they'd like to die at home; 70 percent instead die in a nursing home, hospital or long-term care facility. And while 80 percent of people said they'd like to talk to their doctor about end of life care, only 8 percent said they had done so, according to the California survey. Even more — 82 percent — said it's important to put wishes into writing, yet just 23 percent had done it.
The Conversation Project was launched to change such numbers, said Goodman, who has teamed with medical professionals, clergy, social workers and others from the media for the campaign.
"The goal is to make it easier to initiate conversations about dying and to encourage people to talk now and as often as necessary so that their wishes are known when the time comes," she said.
Those involved with the project, from advisers to board members and staff, have posted their own stories, alongside a "Conversation Starter Kit." Now hundreds of visitors to the site are beginning to share their stories there, as well. While each end-of-life journey is unique, many people are on that path.
The stories sort themselves quite easily in "good death" and "bad death" categories. The goal is obviously the former. The story shared by board member Dr. Donald M. Berwick, who founded IHI, is a sad one. His dad, also a physician, had a cascade of things go wrong and ultimately died with a painful bedsore on his foot that made comfort nearly impossible. Project founding member Otile McManus' dad talked to his children about "waking the dead" in the parlor at home as a boy. Although he died unexpectedly and without the need for his family to make decisions on his behalf, they could have if they'd needed to because they knew what he wanted. His wife died at age 93, surrounded by people who laughed and loved and visited often as she wound down, a death that honored her wishes.
Knowing what someone wants at the end of life doesn't just help those who may have to speak on that person's behalf, either. The National Cancer Institute said people who have already discussed their wishes for end-of-life care with their loved ones feel less stress at the end of their life.
Acknowledging what's happening to someone also provides a chance to take a deliberate detour from seeking a cure that may be very unlikely to providing comfort care and focusing on other things, from relationships to bucket list items.
A hunger for knowledge
There are many ways to measure a campaign's success, especially when the goal is "more humane death," Goodman said. "That's beyond my pay grade. But we can measure the interest."
Since late August, the website theconversationproject.org has had 60,000 unique visitors, and 40 percent of them have downloaded the group's starter kit.
"That amazes me. I don't download anything," Goodman said. "We've had so much response we're kind of drinking out of the fire hose, thinking about our next stage and how to get our message passed along to others."
The project website links to end-of-life documents like an advanced directive, but the kit itself is an assessment tool for an individual to think not only about what matters most, but how to start conversations about it. First, an individual thinks about what she needs to convey. Then comes the how-to, including an assessment of who someone might choose to tell their wishes. Finally, there are actual conversation starters: "I need to think about the future. Will you help me?"
The group has launched a number of small projects with companies that want to use their wellness programs to encourage employees to have that important conversation, and it's also teamed with faith-based groups. "Clergy don't have a problem with the D-word," said Goodman. So next up is a train-the-trainer kit, what she called a "conversation in a box. We'll be able to help people who want to bring it to their own community or congregation."
Say it, write it
Requirements vary from state to state, so it's important to get a form that works where you live. But in general, an advance directive is a document or witnessed oral statement that names a surrogate to make health care decisions for an adult who cannot do it or outlines desired care under particular circumstances, or both. Another form, the Physician Order for Life-Sustaining Treatment, is completed with a physician or care team. It's a standing medical order for what should or should not be done, and a physician who bases care on the POLST is protected from liability.
Advance planning is not just for terminal situations. Sometimes, a person will survive the condition that for a time, at least, left them unable to discuss and express wishes. That means living with whatever was done.
The National Healthcare Decisions Day blog has compiled some resources to make it easy to get many of the advanced planning forms. Just remember that many of them are state-specific.
Download a PDF of the instructions for completing the form.
Download a printable version of the Utah Advance Health Care Directive form, which can be completed by hand.
Cownload an electronic version of the Utah Advance Health Care Directive form, which can be completed online, printed and initialled by hand where necessary.
Visit the American Bar Association website to access a tool kit for health care advance planning.
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