“I was always fooling around with a rope,” said Barry Edge, who was raised near Cochrane, Alberta. His father won the Calgary Stampede four times (twice in bareback riding and twice in bull riding) and Edge was only 16 when he started competitive rodeo. “My dad rode right up until his dying day. I guess that’s where I got the cowboy in me.” In 1976, Edge and his wife, Linda, bought a ranch in Rimbey. “We ranched all week to be able to get away to a rodeo on the weekend,” he said. They were married 36 years.
Photo by Darryl Propp
These memories and others appear in a four-page document in Edge’s own words that he completed shortly before his death from stomach cancer in November, 2010. It was part of a program called dignity therapy, developed by Manitoba psychiatrist Dr. Harvey Max Chochinov to help terminally ill patients create records of their lives. Transcribed from interviews and written in the first person, then edited in conjunction with the patient, the result is a document meant to keep a loved one’s voice alive. “It’s about bringing important things back into perspective at the end of life so they not only remember who they are as a person but to convey that to the people they leave behind,” says Dr. Kim Adzich, Edge’s physician in Rimbey, Alberta.
Over one or two hour-long sessions with a doctor or spiritual care professional, the patient answers simple but profound questions: What was most important in your life? What are your greatest accomplishments? What have you learned about life that you want to share? As Adzich says, “If we were looking through a photo album of your life, what pictures would we look at?” The result is a mix of biography, hard-won wisdom and the patient’s wishes for the future. “The interview is free-flowing. You go where the patient wants to go,” Adzich says. “It’s not tightly prescriptive.”
The benefits, says Dr. Shane Sinclair, a chaplain with Alberta Health Services in Calgary, are two-fold: it can help a terminally ill person in the final weeks of life to reflect on his or her life and can help family members grieve. “You can almost hear your grandfather’s voice when you read it in the first person,” says Sinclair. The therapy gives a patient a sense of control over the process of dying and creates what he calls “a meaningful death.”
Dignity therapy can counter the helplessness and anxiety and remind patients that life has been worthwhile. “Building on that,” Sinclair says, “dignity therapy is an opportunity to speak about what mattered most.”
What does it mean to die with dignity?
How does dignity affect a patient’s well-being? These were just a couple of questions researchers at the Manitoba Palliative Care Research Unit (at the University of Manitoba) asked back in the mid-1990s. Led by Dr. Chochinov, researchers wanted to know why some terminally ill patients had suicidal thoughts and wished for a quick death while other dying patients were able to find serenity. At the time, the Senate of Canada’s Special Committee on Euthanasia and Assisted Suicide was considering the legalization of euthanasia, Sinclair explains, and it wanted to know what factors made patients want to hasten the end of their lives.
“The number one reason people gave for a hastened death,” he says, “was a loss of dignity.” That insight led to the next logical question: How could health professionals maintain or restore a terminally ill patient’s dignity?
In 2002, the research unit interviewed cancer patients to determine what affected their sense of dignity. Psychosocial elements such as anxiety about death and dying and uncertainty about their future and treatment, along with loss of independence and physical pain all contributed to a loss of dignity. Dignity suffers when there is a loss of control that chips away a patient’s sense of purpose. The team used this information to develop tools, techniques and principles such as the ABCDs of Dignity – an acronym for attitude, behaviour, compassion and dialogue – and a questionnaire to measure levels of dignity in palliative care patients. Dignity therapy grew out of this research as a brief end-of-life intervention. Physicians such as Adzich and spiritual care professionals such as Sinclair, who works closely with Chochinov, offer this kind of therapy.
Dignity therapy comes at a time in Canada when health care advocates are calling for more focus on palliative care. A New England Journal of Medicine study of patients with terminal lung cancer, for example, showed that those who received hospice care soon after diagnosis were more mobile, happier and lived almost three months longer than those who did not. (The 2010 study is called “Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer.”) The Canadian Council of Integrated Healthcare cited this study in a report it published in May called “Dying with Dignity in Canada.” Deaths in Canada are expected to increase 40 per cent each year by 2020 as the baby boom population ages, the CCIH reported. Only 10 per cent of the population dies suddenly. Most of us will die from long illnesses, which the CCIH says turns palliative care into a critical issue in health care.
Within the area of palliative care, dignity therapy can address spiritual and emotional aspects that other therapies don’t touch on. One of the cornerstones is the “Dignity Model,” a kind of guidebook to help health-care workers both understand and address illness-related issues. The leading question, known as the Patient Dignity Question, is simple but pointed: “What do I need to know about you as a person to give you the best care possible?”
This was a question that Gloria Regush’s health-care team at Foothills Medical Centre, in Calgary, would have asked when they began her treatment. Regush, who is 60, was diagnosed with terminal cancer on March 12, 2012. One week later, surgeons removed a tumour the size of a small orange from her brain. “Surgeons came into my room and told me that my family and I were going to meet the people who would deal with me from this point forward,” she says, in a bright voice worn with fatigue. “We met everybody: pharmacists, the radiation oncologist, the chemo oncologist, and Shane.” This is the same Shane Sinclair who works with Chochinov and is included as a spiritual care professional.
Regush, a practising Catholic, saw this as one piece of the spiritual puzzle. “I have other spiritual things I do,” she says. “I pray and go to church. But this is spiritual because it makes me think about things that are important to me.” Because it is non-denominational, chaplains such as Shane Sinclair can cross spiritual borders. “It’s a way we can address the universal aspects of what it means to be a human being,” he says. “It provides a universal language for entering that landscape.”
Not prone to self-scrutiny, Regush knew it would be an opportunity to create a story through which her grandchildren – 13, 6 and 1 – could remember her. “I’m a young grandma,” she says. “I’m only 60! And in all likelihood I’m not going to live to dance at their weddings. So how can I let them know what kind of person I am or was?”
Regush reflects on her experience with dignity therapy only a few days after her first session with Sinclair. She oscillates between calm contemplation and an unspoken sadness at what she might miss. “There’s nothing more important than my family,” she says – more than once. “Since my diagnosis people have said, ‘You have such a positive attitude.’ But what am I going to do? Sitting at home and crying the blues is not me. I’m about family and relationships. So I want to do whatever I can to share that.” Dignity therapy is not a proxy for psychoanalysis. Patients are encouraged to record in their own words what is most important to them, rather than question their motivations or analyze their past.
Not all experiences are as positive. Linda Edge describes the process as painful and, two years after the death of her husband Barry, she has read the document he produced once. “Barry was having a hard time vocalizing anything and I could not put into words what I was thinking,” she says. “Putting details about his life down on paper was not easy when we knew he was not going to be around for much longer.” Anyway, Linda says the ranch where they shared a lifetime together has provided her an apt record of Barry’s accomplishments. “Every day, on our ranch, we see what he has done.” And while she cannot predict how she would feel if she were the one with a terminal illness, she says, “at this point, I am sure my family knows how I feel, knows my accomplishments, and will be able to remember me without having to read it.”
Though dignity therapy is not a one-size-fits-all treatment, the study “Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life” found that its effectiveness is encouraging. Published in the Journal of Clinical Oncology, the 2005 study by Chochinov and partners reported that more than three- quarters of participants said dignity therapy increased their sense of dignity, while 67 per cent said it heightened their sense of meaning. Families also found the program mostly positive: 95 per cent believed it helped their loved ones and more than two-thirds said the dignity therapy text comforted them in their grief.
Sinclair believes it will become a common part of end-of-life care in the years to come. “We know that [many] cancer patients, particularly those who are at the end of their treatment, want to have these types of conversations,” Sinclair said. “But sometimes I think that because cancer is characterized as a fight, a disease to battle, these conversations don’t occur as often as some patients would like.” He says that if health-care providers proactively address end-of-life issues, the patient’s quality of life will improve. “In some sense it’s the white elephant in the room. Dignity therapy is a way of addressing the white elephant.”
Regush agrees that the therapy session was difficult. “There are bits and pieces that I didn’t lay on the table.” Still, a few days afterwards, she encourages other terminally ill patients to seek out dignity therapy. “This is a chance to look at a spiritual part of my life. If we’re talking about comprehensive, whole-person care, this is wonderful.”
Her willingness to complete the interview with Sinclair might be rooted in a recent life event. Regush’s father died while she was recovering from brain surgery last spring. A few years earlier, on a visit to his house in Vancouver, she interviewed her father about his life. He told her about growing up in “Nowhereville, Saskatchewan” and about his life before she was born. Regush sent the transcript of the conversation to her sister, who used stories and details from it in their father’s eulogy.
As Regush recounts the story, she sounds tired, but happy. “It was wonderful.”