A sneak peek at a recent, yet to be published Swedish study reveals that end-of-life (EOL) conversation powered by an easy, prompting playing cards tool is a game changer. In fact, multiple countries, scrambling to obtain and translate the cards to fit their cultures and languages, are finding that they enable people to zero in on what’s important to them in life, as well as in dying.
Even in countries where discussions of death have long been taboo, there’s a growing push to allow people to make their own choices. Local governments have seen a decrease in their budget costs based on patients making their own choices – especially with options to die at home, or to not be placed on life-saving equipment, or not to continue painful, expensive, fruitless medical care. Families find that understanding loved ones’ choices makes dealing with life and death easier, calmer and more manageable. And, individuals find great relief knowing their wishes will be met.
“At end-of-life, it’s very different if it’s the MD guiding what happens. I was interested in conversations that made sure I do what the patient wants, not what I want,” emphasized Dr. Elizabeth Menkin, M.D., a geriatrician and palliative care physician. She attended a going-away party for a registered nurse from the Visiting Nurse Association and spoke with others at that gathering about the idea of creating a coalition that focused on energizing the public “to demand better EOL care”. Thus, Coda Alliance was founded, now in its 18th year. “My goal is to create a practice as they did in Obstetrics, where consumers drove the birthing experience to be reflected as a family event, not medical. We can do the same thing for end-of-life. It really is a life cycle event, a significant family experience.”
Coda Alliance and other support groups grew from grassroots efforts to help community members deal with EOL – at first with advance planning documents, which they found had value, but didn’t solve the problem. With legal document-driven, advance life planning efforts not accomplishing the expected objectives, experts began seeking methods that completely engage patients, family, care takers and medical personnel in discussions about hopes, wishes, values and goals.
Dr. Menkin and Coda Alliance tried numerous attempts and methodologies to develop a tool for end-of-life discussions. While useful, some were confusing or burdensome. But they didn’t give up. Since Kaiser offered a special sabbatical program for physicians to work on something important, Dr. Menkin applied, and financially supported by Archstone Foundation, Coda began the long search to find the best EOL conversation methodology. Soon they developed a program to promote EOL conversation methodology for use in assisted living facilities, which led to today’s version of GoWish. This time it met Coda’s goals of promoting EOL conversations way before serious illness arose, as well as for those with chronic conditions, or for those with current life-threatening problems. As she writes in her abstract, “the cards focus the conversations, provide important vocabulary to give voice to patients’ needs and concerns, and offer a means for sharing those ideas.”
According to both U.S. research and the new Swedish studies, choices printed on the 36 cards are proven to enable people to talk about death and life much more comfortably, even in cases where the subject may be somewhat forbidden. English language card choices include the following – some of the most popular to-date:
“To have those that I am close to around me.”
“To maintain my dignity.”
“To be free of pain”
“To live my life to the fullest.”
Science is Important, But Ultimately, it’s About Humanity
But, Dr. Menkin notes that while scientific proof is extremely important, the focus for GoWish is about humanity. “It’s about how we use the cards that enable people to find what matters most” in life and death. She points to Dawn Gross, MD, PhD, a former hematologist, presently a hospice and palliative care, physician, as “leading the parade” to help people find GoWish. “She’ll even pull out a GoWish pack on a plane flight,” she laughs. “Dawn uses the kind of language that really encourages a person to get down to what it is they really want.”
Dr. Gross has found a second way to benefit from the cards, besides just focusing on the individual. It’s proven highly valuable to families.
“My mother, brother and I were introduced to Go Wish at a funeral planning workshop. Because we were family, we were invited to use the cards in a particular way. We sorted the cards for each other instead of for ourselves. What an eye opener! We thought we knew what each of us wanted, but we didn’t even choose each other’s number one card. It was like an anvil dropped on my head, just like in the ‘Road Runner’ cartoons.”
Several months later when Dr. Gross began practicing hospice and palliative medicine, she held onto the cards because she saw them as an “incredible tool” to discovering what really matters to people. Asking probing questions about the cards can help people share stories that offer insight into how that person is interpreting the meaning of a card. So, Dr. Gross asks questions such as:
Dr. Gross encourages everyone to use the cards on a regular basis. She and her husband play Go Wish every year on their anniversary. And since she’s played with her children, they now proactively support this annual activity. “Because life is dynamic,” Dr. Gross says. “Now my kids tell me it makes a difference to the whole family to know what matters to each person.”
And, she has no problem pulling out GoWish wherever she is, even on a plane. When Dr. Gross heard a passenger describe her distress about her mom becoming ill and not knowing what she wants, Dr. Gross offered support and pulled out the cards.
“When you use the cards, it’s all about what matters most in life. Because when you focus on EOL wishes it becomes crisper. Then you need to ask, do your choices matter just at end of life or right now too? It helps us focus on what’s important to us throughout life,” emphasized Dr. Gross, who, in partnership with the Coda Alliance and two business partners, recently launched a new company, Dyalogues™, to help people discover what’s important in life, by facilitating “courageous conversations that begin with the end in mind.”™