Adrienne Holden has seen hard deaths and easier deaths. Long ones and short ones. Times when the deceased left their families with precise instructions for their care and burial, and times when they did not.
“I’ve seen families be torn apart. I’ve seen it professionally; I’ve seen it personally,” Holden said.
Holden works as a care transitions coach in St. Louis, helping people who are preparing to move into nursing homes lay out their end-of-life wishes for their loved ones and doctors to follow. This includes directives for medical care: Should doctors continue to administer emergency care, regardless of how long it will extend your life? Where do you want to be when you die — at home, in a hospital bed, or somewhere else?
“If you just have that dialogue, it prevents people from having guilt: Did I make the right choice? I hope I didn’t do something too soon, or did I do it too late?” Holden said.
“That’s a lot. That’s a heaviness to have on you.”
On Tuesday, a Boston-based nonprofit called The Conversation Project will hold a free workshop in St. Louis about how to discuss end-of-life care with a loved one. Holden is part of the local committee from the University of Missouri that is organizing the event.
“Sometimes, if you just have these conversations lightheartedly, whether it’s dinner or you’re just hanging out, the more you have it the easier it gets,” Holden said. “It won’t feel like such a morbid conversation.”
The Conversation Project’s goal is to increase the number of people who have end-of-life conversations with family members before a crisis strikes. Though polls show that up to 70 percent of Americans say they would prefer to die at home, only 22 percent actually do.
A 2010 study found only one in four American adults had an advanced directive for how they wish to receive care at the end of life (another study estimated one in three). Around that same time, a provision in the Affordable Care Act that reimbursed physicians for providing end-of-life counseling to Medicare patients sparked heated cries of “death panels” from Republicans.
But in recent years, the public push to make living wills and advanced directives a common practice has become stronger.
“Definitely in the past couple years, it’s been more in the public eye. These discussions have become more nuanced,” said Dr. Maria Dans, a palliative care physician who works in an intensive care unit at Barnes-Jewish Hospital in St. Louis.
Palliative physicians like Dans come into the picture when a patient has a life-threatening illness or a chronic disease, when medical care shifts from searching for a cure, to helping a person maintain their quality of life for as long as they wish. Often, an advanced directive or living will can offer a roadmap for physicians if patients are unable to make their own medical decisions. But if a patient hasn’t expressed his or her wishes, even in casual conversations with family members, it can be challenging.
“There’s still probably things that bring them joy in life, and we can try to elucidate what those are. If what you want is sitting on your porch with your dog and having a beer, we need to know about that beforehand,” Dans said.
Americans spend a disproportionate amount of money on health-care costs at the end of life. One study by the Veterans Administration found that acute hospital services accounted for 78 percent of a patient’s health-care costs during the final 30 days of life, an average of about $34,000 a person. Another study of terminal cancer patients who reported having end-of-life discussions with their physicians found that their overall health-care costs would be lower during their last week of life.
But individually, it’s not the money that matters. In 2000, another VA study that Dans cited asked terminal patients, family members and caregivers to rank what they thought were most important to patients as they reached the end of their life.
“The caregivers thought, what’s most important is more time and less pain and suffering. But the patients actually ranked clarity of mind and not being a burden; setting oneself right with god and your family much higher than they did physical pain and suffering or even more time,” Dans said.
Dans said that if the study tells her anything, it’s that sometimes we can be wrong about what our loved ones want. Sometimes doctors can be wrong, too. The end of life is an emotional time.
“Many people who go into medicine, go into medicine to fix stuff. And if that’s your mentality, it’s hard to step out of that,” Dans said. “Particularly with physicians who have had a really long term relationship with their patients. They’re almost like additional family members.”
When it comes to talking about dying, there are strategies that can help, said Adrienne Holden, the care transitions coach. The Conversation Project and the Missouri attorney general’s office both have “starter kits” that are free to download.
“I use the word, 'respect.' I use the word, 'wishes,' and I use words like 'honor.' And it seems to help,” Holden said.
For Holden, the situation is personal. Recently, her father’s health started to decline. Five years ago, her brother died from complications with sickle cell anemia, but with all his “ducks in a row,” she said.
Holden’s 71-year-old mother, Pearl Holden, surprised her when she asked Holden to help her write an advance directive after the death of her son.
“He had a strong outlook on life, and a positive outlook on afterlife,” Pearl Holden said. “I want that too.”
Pearl spent her career building parts for airplane wings for companies in St. Louis, raising her two children with her husband Marvin — a good life, she says. Today, she’s retired, in excellent health and bakes cakes from scratch.
“I felt it was important for my child, my daughter-in-law and them to know my wishes. To keep the burden off of them; to know it’s alright. It’s alright for you all to have your moments of grief but still life goes on,” Pearl said, sitting at her kitchen table in Florissant on a sunny afternoon.
Even if it’s far away, Pearl said she thinks death is a conversation more people should have.
“I think they fear if they talk about it, it’s going to happen. But if you don’t talk about it, it’s still going to happen.”
If you go:
The Conversation Project Event will be held Tuesday, September 29, from 7 to 9:30 p.m. at the Ethical Society of St. Louis. Registration is strongly encouraged.
For more health and science news from St. Louis, follow Durrie on Twitter: @durrieB.