Palliative care specialist Gary Rodin says it’s time to put death back on the table for discussion.J.P. MOCZULSKI
The last thing Benjamin ever thought he'd have to do is help his father die.
But after a cancer diagnosis in the prime of life, his father gathered his wife, 20-year-old Benjamin and his older brother around the kitchen table in their Toronto home to discuss exactly that.
"We faced his death together, as a challenge," recalls Benjamin, who asked that his surname not be used to protect the privacy of his grieving mother. "When he knew the end was near, he asked that something good come out of it and that his body be used to help others."
Benjamin struggled to accept the fact that his father, a successful businessman and enthusiastic skier, golfer and runner in his late 50s, had only months to live. Just over a year, as it turned out, from diagnosis to his death last January. When aggressive treatment failed to stop the spread of pancreatic cancer to his internal organs, his father opted for palliative care.
"There was no sugarcoating. We knew he was going to die," says Benjamin, a poised and thoughtful business student. "We were involved in every decision. We normalized it by talking about everything, including all the therapies and procedures my father went through."
With every passing year, as life expectancies increase, there is an illusion we will all last forever. Medical stories often focus on the sexier aspect of medicine - the cure.
But palliative-care experts say the bulk of medicine is about something less cheery: how to manage the care of terminally ill people. Research shows that many doctors, as well as patients, are reluctant to initiate this conversation. A recent study by Queen's University in Kingston found that only 18 per cent of 440 patients with end-stage disease talked to doctors about their prognosis, even though most were likely to die within a few months.
The time has come to put death back on the table for discussion, says Gary Rodin, the head of psychosocial oncology and palliative care at Princess Margaret Hospital in Toronto.
"For years there was a feeling in the medical community that you shouldn't talk about death. This created a conspiracy of silence," says Dr. Rodin, who is also a University of Toronto professor. "But someone who is seriously ill knows it, so if you don't talk about it they feel very alone."
Today, medical students are being taught empathy and communication along with anatomy and physiology.
Doctors understand that terminally ill patients don't want sympathy, or to be deprived of hope. "But hope isn't just about how long you live," says Dr. Rodin, "but about knowing you are loved, and that your life is meaningful."
Researchers have found that the final days of a person's life are often the most expensive, and medically complicated. In many cases, active treatment is maintained, or another round of chemotherapy administered, even if there is no chance it will improve the patient's quality of life.
"There are cases where futile treatment, such as chemotherapy, is given because people are reluctant to have these conversations," Dr. Rodin says, "and patients fear they will be abandoned. Far too often, people are referred to palliative care too late."
If patients plan ahead, there is a greater likelihood that their passing will be more peaceful, and that their death won't in any way diminish the life they have lived. Planning includes a discussion about how and where to die and the writing of a living will and a do not resuscitate order (DNR).
Though Dr. Rodin helped Benjamin and his family cope, a recent U.S. study found that 40 per cent of people with family members in hospice care were provided no information about the loved one's life expectancy, and 20 per cent were never told the illness could not be cured. The study, published last year in the Journal of Palliative Medicine, concluded that the most common question was: "How long does my loved one have?" and "What is happening with my loved one?" Many were afraid to ask doctors for a physical description of a dying person's last moments, which can be quite frightening.
In his recent book The Welcome Visitor , legendary BBC broadcaster John Humphrys writes about people who are afraid of living too long and having no control over how their lives end.
"Society's approach to death must change as we all live longer," Mr. Humphrys says. He was inspired to write the book by his father's "final sad, lingering and undignified" years. "My father's last years cast a shadow over what had been a good life," he says.
Benjamin knows he is blessed to have well-adjusted parents who helped him face death: "We saw it as our family responsibility."
Dr. Rodin also helped the family decide how to manage their father's care, including whether he should participate in a clinical trial and when to stop aggressive cancer therapies in favour of enjoying the few months he had left. Ultimately, his father decided to work a half-day at the office, and ski and travel as long as he could. The summer after his diagnosis, he even completed a two-day, 200-kilometre bike race to raise money for cancer research.
By the fall of 2008, when his illness became debilitating, he chose to be cared for at home. A palliative-care team installed a hospital bed in his bedroom, and a physician was on call 24 hours a day. His sons and wife helped him with his medication and going to the bathroom.
Two days before he died, his father checked into Princess Margaret's palliative-care unit. A colourful mural decorated the wall of his room, and soothing music from a CD player on his bedside table filled the room. A physician told the family what to expect when his time came, and explained that he wouldn't be in pain.
"He told us it could be a few days or hours. We held my father's hand and told him we loved him, because he could still feel our presence, even though he wasn't responding," Benjamin says. His breathing became laboured toward the end, which was a little scary, but the palliative-care team ensured he had the right balance of drugs.
In his grief, Benjamin felt supported by his close-knit peer group, but also found he had no script for his journey. "I didn't want my friends to pity me or for them to feel hurt. I wanted them to know that I was still the same person," he recalls.
In this, too, his father and Dr. Rodin helped him, advising him how to share news of the illness with friends.
Dr. Rodin notes that things rarely go as smoothly as they did for Benjamin's family. Sometimes, the dying person changes his wishes as he becomes sicker. There is no prescription for a "good death," as it is strongly influenced by a person's religion, culture, age, background and psychology.
But every family can benefit from open communication, early planning and attention to pain relief, Dr. Rodin says. "Birth and death are two major life events. We go to prenatal classes to prepare for birth, and we also need to prepare for death."
Preparing for death
If you have a life-threatening illness, focus on getting cured, but also on making alternative arrangements if you don't.
Communicate your health condition to your family, including your children.
Let them know your wishes for end-of-life care.
Choose where you want to die: Is it practical or possible to die at home?
Meet the palliative care team early on.
Ask about nursing care, personal support, occupational therapy and how to modify your home (raised toilet seats, walkers, shower grab bars).
Consider a living will; but also make wishes known to family members.
Sign a power of attorney for care.
Explore the option of a palliative care unit and make a list
of three places you'd consider going to.
Write a will and think about burial and funeral plans.
Source: Camilla Zimmermann, physician and head of the palliative care service at the University Health Network in Toronto.