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How the terminally ill live with death and go with grace Add to ...

Her mother was lying in bed, staring off into the middle distance.

“What do you see, Mom?”

“Oh, your father,” came the calm reply.

Her father had died seven months earlier. Now her mother was close to death.

“And how is he?” asked the daughter gently.

“Oh, he’s good,” said her mother.

“Why is he here?”

“He’s asking if I’m ready to go,” she continued calmly.

A pause. “Are you?”

“Oh, no, no. Not quite yet, dear.”

Teri Crockford laughs gently as she recounts the story about the end of her mother’s life. A senior palliative care nurse at a not-for-profit hospice, she understands that living with people who are dying can be a remarkably rich time that yields valuable insights about the beauty and mystery of life and the things that are most important.

Health-care experts in palliative care deal every day with what we’re hard-wired to avoid and even deny.

They know death. They know what it looks like, how it comes, how its imminent arrival shapes our thinking and what it often requires us to do. The rest of us remain on the outside, fearful, and sometimes – as with the case of Jack Layton’s death last week from cancer – full of wonder at the grace and calm some people can achieve in the face of it. We read the words of Layton’s letter, in which he addresses fellow cancer patients, his party, his supporters, and then all of us – “Love is better than anger. Hope is better than despair” – and marvel at the clarity and presence of his mind. The 61-year-old leader of the NDP was dressed, sitting up and talking to political colleagues, family and friends on Saturday. Then, early Monday morning, he died. It seems stunningly, frighteningly incongruous.

But to those who usher people gently across that final transition, the process is demystified, a series of often textbook psychological stages and a time that can be full of heightened responsibility, clarity of emotion and unexpected joy.

As Ms. Crockford says of her workplace, the Dr. Bob Kemp Center for Hospice Palliative Care in Hamilton, “It’s not a sad place, even though sad things happen here. There is so much laughter and fun. I’m not giving them the bad news – their doctors have done that – so I’m there to say, ‘Okay, this is what it is and now what can we do to make you as comfortable as you can be.’ It’s about what people want the goals of their care to be.”

Everyone copes differently with terminal illness, and palliative care specialists are quick to point out that it’s not their job to force any script about what is said or not at the end. “Jack Layton was a special guy. He obviously knew very well what he was up against. When he made the announcement about his second cancer in July, he looked pretty advanced at that time,” explains Paul Daeninck, oncologist and palliative care physician with Cancercare Manitoba at St. Boniface Hospital in Winnipeg. “He was a gentleman who was able to look at things, do the physical and the mind work and spiritual work. Not everybody gets there.”

It’s often a matter of personality type. Some people see the diagnosis of terminal cancer as a chance to grapple with the ineffable and revel in the poignancy of life on the brink of death. They face the grim reality of their illness but remain engaged with life, living fully and meaningfully in the present. It’s not inconsistent to live in the two domains, doctors say. There are deathbed marriages and happy celebrations of anniversaries. Some hospice patients who have only weeks or days to live, will make a point of getting dressed to go check out the fall fashions.

“We call it having ‘double awareness,’” explains Gary Rodin, head of Psycho-Social Oncology at Princess Margaret Hospital in Toronto.

Reverend Harry Lehotsky, a 49-year-old Winnipeg pastor diagnosed with terminal pancreatic cancer in 2006, used his remaining time to write moving newspaper columns about mortality and faith. When Paul Quarrington, the award-winning writer and musician, faced inoperable stage 4 lung cancer in May 2009, he channelled his creative energy into completing several projects. Friends described the 56-year-old, in the eight months of his life that remained, as angelic. “He almost seemed to be glowing a lot of the time,” one said.

“It’s almost like opening a door, and some will see that future as an opportunity to talk about things and be open about their feelings and some see it as a room full of horrors. They want to shut that door and not hear anything about it,” explains Dhali Dhaliwal, president and CEO of Cancercare Manitoba. “That’s how they cope with their disease, and it’s not our job to break down those coping mechanisms.” The goal of palliative care physicians is to manage the process – offering relief from pain, anxiety and depression, where necessary, and help with the social interactions of family and friends.

Still, it’s common for the dying to focus on “legacy leaving,” as Mr. Layton did with his letter. “It’s a remarkable transcendence,” Dr. Daeninck says. “When there’s only a certain amount of time left, the person who is dying often becomes secondary, and it’s all about everyone else and what needs to be done or said to them.”

Ms. Crockford recalls one woman in her care who went through a checklist with her spouse in her final moments. She wanted to know if she had talked to all the members of her extended family, naming each, one by one. Her husband patiently reassured her that she had. “It’s okay,” he said finally. “We’re all okay. You have permission. You can go.” And minutes later, she died.

Modern culture doesn’t ease our trepidation about death as it only holds out Hollywood versions of it – either excruciatingly painful and horrific or exquisitely beautiful, a scene of pretty nighties, hand-holding and tearful, joyous reconciliations. But in reality, each experience of death is as individual as the person.

“You die how you live,” Ms. Crockford says. “If you weren’t a nice person in your healthy life, you’re not going to necessarily have a magical transformation into a lovely person.”

The work is always a lesson in the important aspects of life. “It’s not about your house, your car, your money. We all basically die the same way,” she says. “And the only richness is in family and friends. That’s really where the wealth is.”

Follow on Twitter: @Hampsonwrites

 

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