Dr. Shane Sinclair calls death “a proverbial white elephant.” It’s something we all think about and something we all face eventually. Sinclair, the spiritual care co-ordinator at the Tom Baker Cancer Centre in Calgary (and CIHR Postdoctoral Fellow in the Manitoba Palliative Care Research Unit, University of Manitoba), finds that we have a cultural tendency to avoid talking about the end of life. In a world where between half and one-third of people will be diagnosed with cancer and half of those will die from their illness, death is very much a part of reality. And when a cancer diagnosis shifts from curable to terminal, the topic of mortality becomes unavoidable for the patient, his other loved ones and health-care providers. BE PREPARED: Today is a good day to start thinking about your time on earth. Don’t dwell, but give it a little consideration.
Traditionally, it’s at this point when palliative care becomes a key part of a patient’s regimen. Palliative care is a group effort involving an interdisciplinary team that includes family doctors, pharmacists, psychologists, social workers, nurses, dieticians, specialist physicians, speech pathologists, occupational, art and physical therapists and spiritual care professionals. By caring for all aspects of the person, quality of life is maximized. “In many respects, palliative care focuses less on preparing for death and more on living until you die,” says Dr. Sharon Watanabe, director of the department of symptom control and palliative care at the Cross Cancer Institute in Edmonton. There’s new evidence that talking about death and introducing palliative care earlier on in a patient’s cancer care can improve quality of life and even extend life. A study published last year in The New England Journal of Medicine showed that in a group of patients with newly diagnosed metastatic non-small-cell lung cancer, those who received palliative care early on survived longer than those who received standard oncologic care.
Findings like these are encouraging to Bert Enns, past director of the palliative care and end-of-life program with the Calgary zone. She’s currently a spiritual care specialist with the Tom Baker Cancer Centre with an interest in palliative care. “As clinicians, one of our struggles is the sense that we might destroy somebody’s hope if we introduce questions around mortality early on,” Enns says. “Some of the research would indicate otherwise.”
Introducing palliative care early may help patients deal with death, but it’s never easy, says Dr. Cheryl Nekolaichuk, a counselling psychologist on the tertiary palliative care unit at Edmonton’s Grey Nuns Community Hospital. For many, it means that items on that bucket list of things to do before you die won’t be checked off. For others, it’s accepting that they won’t be there for their loved ones. Some people take it in stride, while others never come to terms with it. “Sometimes you’ll hear people say, ‘This is the best thing that ever happened to me. It gave me an opportunity to spend more time with family or to really set my priorities straight,’ ” Nekolaichuk says. “But I vividly recall one patient who said, ‘I know a lot of people say that, but this is not the best thing that’s happened to me and I can’t ever think that it could be.’ For every person, it will be different.”
Watanabe agrees. “The awareness that your time is limited sharpens your focus on those things that are truly important. But we can’t make a person accept that they’re dying.” In cases like this, she says, the best caregivers can do is accept the realities and do the best they can to support the patient through palliative care.
In her practice at the Grey Nuns, Nekolaichuk helps patients by joining them in whatever emotional space they happen to be in, whether that’s a place of depression, fear or uncertainty, or a place of peace and acceptance. “Ultimately, what we bring is ourselves and a sense of hope. Maybe not for a cure, maybe not for the dreams a person may have had, but a way of looking at things that can help people find meaning and purpose in small things,” she says. “We try to help patients live with and maintain dignity, and help patients reconnect with important things in their lives in a hopeful way.”
These days, advances in pain management mean most symptoms can be adequately addressed, enabling patients to focus their energies on those things that mean most to them. Often, this means spending time with family and friends, creating legacy pieces such as letters or keepsakes to leave to loved ones, or asking the big questions that inevitably come up when facing the end of life: What has my life been about? What impact have I made? What are the relationships that have been important to me? What lasting contribution am I going leave?
Facing incurable cancer is cause for this type of reflection, and often forces people to reconsider what’s important to them, Sinclair says. “For some people, maybe nothing changes. They feel that they’ve lived the life that they want to and they’ve lived out of their place of meaning and purpose. For other people, it’s an opportunity to change some things.” According to Sinclair, embracing that opportunity is one of the key factors in a “good death.”
He explored the concept as part of his study on the impact of death and dying on the lives and practices of palliative care professionals, published by the Canadian Medical Association Journal in February 2011. A good death doesn’t always mean the cliché scenario, with the patient at home, asleep and surrounded by family.
Sinclair’s study turned up some important components to a good death that stem from beyond those final few hours: awareness of the situation, maintaining one’s sense of meaning, self congruence (I am still me, despite my disease), being an active participant in one’s death, and being at peace with loved ones.
“It’s stuff we can all work on prospectively rather than waiting for circumstances and time to dictate when we have to deal with it,” he says. Sinclair’s work has shown him the powerful modifying effect death and dying has, not only in the lives of patients, but also in those of their families and health-care providers. “For some people, facing mortality informs the way they’ll live their life,” Sinclair says. “That’s the mystery in all of this. Although death is a morbid topic initially, in talking about it, it provides more clarity to how people want to live their lives, whether that is for six months or 60 years.”