Illustration by Tim Cook
Jane Dowrick never imagined she would be the one making end-of-life choices for her mother. But that’s exactly what the 62-year-old Chesterfield resident had to do in 2003, after her 90-year-old mother’s health declined. Until a fall sent her to the hospital, Dowrick’s mother was healthy and active. Like many other adults, she had never talked about or drawn up advance care documents outlining her end-of-life wishes.
When her mother was almost comatose, Dowrick had to make a decision about continuing treatment. “I had to decide what to do,” she says. “But I didn’t have enough information.”
Dowrick knew her mother wanted to die at home — but not much more than that. Getting her into hospice care was difficult, and she couldn’t make that one wish come true before her mother passed away. “We were in a rural area in Pennsylvania, and they were overwhelmed,” she says of the local hospice service. “If I had it to do all over again, I would have explored what it would have taken to get her home for the last two weeks.”
Families in Dowrick’s situation can become extremely frustrated and confused. And that’s where a new initiative, Honoring Choices Virginia, hopes to step in and help. Honoring Choices is focused on making advance care planning available to all patients, enabling them to make their wishes known not only to family members, but also to their health care providers.
The initiative is a joint venture between the Richmond Academy of Medicine and the area’s three health care systems: Bon Secours Richmond, HCA Virginia Health System and Virginia Commonwealth University Health System. The health systems have been working since last September to train and educate health care professionals to make sure patients’ wishes about end-of-life care are documented and honored. The program is currently in place at nine sites chosen by the health systems, with plans to roll out to nine more in June.
Ken Faulkner, coordinator of VCU Health System advance care planning and assistant professor in the School of Allied Health Professions, has addressed the issue with his own parents, who are in their 80s. “Mom and I can sit down and talk. She is not afraid to anticipate a future event,” says Faulkner, who also works with the Honoring Choices program. “Dad will get up and leave the room — it’s too uncomfortable for him. It’s human nature; we don’t like to foresee or imagine ourselves in these terrible circumstances. It’s something we would like to avoid.”
Moral Uncertainty
According to data from the Richmond Academy of Medicine’s research initiative on Honoring Choices, 90 percent of people in the Richmond community say they have discussed their future health care wishes with a family member or loved one. But only half have those wishes documented, and even fewer (35 percent) have discussed those wishes in depth with their family or loved one.
It’s a problem that Bud Hammes recognized in the mid-1980s. The director of medical humanities for Gunderson Health System in LaCrosse, Wisconsin, worked to establish Respecting Choices, the forerunner and foundation of Honoring Choices Virginia.
Hammes advocated for the program after seeing many patients admitted to the hospital who were “too sick to tell us what they wanted,” he says. “We had to turn to the family to make very important life and death decisions, and they didn’t know what to do. They were dealing with moral uncertainty.”
Honoring Choices Virginia is using Respecting Choices curriculum to train facilitators to initiate crucial conversations and help patients and families articulate what is important to them. “We need everyone being open and clear and coming to a decision,” Hammes says. “It helps keep families together and reduces anxiety. It helps everyone through that very difficult time.”
The program does work, he adds, noting its success in LaCrosse. “When we look at the population of LaCrosse County, 96 percent of the time there is a written care plan in [a person’s] medical record.”
Dinner Table Conversation
It’s not easy in America for families to have these conversations. “As a culture, we are death-phobic,” says Roxanne Cherry, oncology and palliative care chaplain at Henrico Doctors’ Hospital. “Conversations don’t come early enough. You can have the conversation around the dinner table. If we help people who are healthy have a conversation, they are able to talk about what’s important to them. We can’t respect your choices for future medical care unless we know what they are.”
Having a legal document in place makes choices clear, especially if there are family dynamics involved. If you become unable to make your own medical decisions, Virginia law recognizes your next of kin as your surrogate decision-maker, “unless you have a legal document to state otherwise,” says Dr. Leanne Yanni, medical director for palliative medicine at Bon Secours Richmond. “It gets complicated if a patient has a life partner and is not legally wed, or if there is a marital separation. This is another reason why you should go through this process while you have clarity of thought. These discussions should be a priority, and they should be updated when life circumstances change.”
Nathan Kottkamp, founder and chair of National Healthcare Decisions Day, who also sits on the Honoring Choices Virginia board, recognizes that this type of decision can be traumatic for everyone concerned. “As a society, we tend to practice defensively. We default to doing everything, whether it’s CPR or artificial hydration, to keep people who don’t have any type of directive alive,” he says. “For many people, that is the default, not the choice.”
Providing Tools
Honoring Choices emphasizes not only normalizing conversations around end-of-life wishes, but also providing people with the tools they need. “A document should be the record of that conversation, not an exercise in filling out forms,” Kottkamp says. “The conversation is first and foremost.”
Kottkamp created National Healthcare Decisions Day, which is on April 16 each year, as a day to inspire, educate and empower the public and providers about the importance of advance care planning. Hospitals take part by providing education about advance directives and giving patients a free advance directive. “We have had 100-percent participation with hospitals across the state,” he says.
Honoring Choices and National Healthcare Decisions Day are aligned in their missions. “It gives us more ways in which all of us can hit the topic over and over again,” Kottkamp says. “We want to move the ball as to how many people have had these conversations.”
