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Dealing with dying: Does anything make it easier?

Jennifer McPhee
Northern News Services

Yellowknife (Jan 20/03) - In a pizza restaurant last spring, my mother told me she had cancer.

I tried, unsuccessfully, not to cry in front of the strangers in the room. I remember thinking how weird it was that she was comforting me, and not the other way around. Everything else in the restaurant was a blur.

NNSL Photo

Most people need help in preparing for the death of one's self or a loved one. - Merle Robillard/NNSL photo

That day, I was shaken out of denial and forced to confront the cold, cruel truth. Like everyone else, I will lose people whom I love deeply. And I will eventually die myself and leave others behind.

Since that day, I've started thinking about what will happen if my mother gets really sick. It may not be for many years. But I want to know what she'll require from doctors and nurses and how I can help her.

What do people need when they're dying, apart from pain control? Does anything make it easier?

I asked Robert Smith this question and he agreed to talk about his wife's death. To protect the privacy of his children, he asked me not to use his real name.

Smith told me it's important for people who are dying to know they've made a contribution that was appreciated.

At the end, people need to hear they were a unique human being who made a difference in other's lives.

Smith conveyed that message to his wife. So did the e-mails, letters, phone calls, flowers and food often delivered by friends.

"You can face the end with more comfort, dignity and peace of mind," he said. "If you feel you've made a difference during your time on Earth."

His wife knew she was dying, came to terms with it and prepared for it.

"You have to," he said. "There comes a point where the doctor comes in and tells you it's the end of the line."

But how do you prepare to die?

In his wife's case, they made plans for the children's future. With the help of friends, his wife compiled scrapbooks for each of them. Until morphine made it impossible, she tried to write letters to her children.

Before her death, she talked at length with a good friend. Those conversations formed the basis for her eulogy.

Good health-care can help A family's health-care team can lessen the pain for the family and for the person who's dying, said Smith.

It helps if medical staff are competent and genuinely care. They should convey compassion without being falsely sympathetic.

His own experience was extremely positive.

"I can't say enough about the doctor who attended our home regularly and the home-care staff who came into our home," he said. "I can't imagine the care being better anywhere. As difficult as it was, that made it a lot easier."

Palliative care at Stanton

In April 2001, Stanton's manager of patient services Sharon Cook wrote her thesis on palliative care at the hospital.

Cook interviewed four terminally ill patients and four caregivers (family member or friend) and asked them about their experiences at Stanton.

Overall, patients were happy with the care they received. No one said pain control was a problem.

Patients told her they want to be treated with respect and kindness. They also want doctors to give them enough time, and not rush through visits.

At Stanton, medical staff tries to help palliative care patients die with dignity. This means helping patients have control over the remainder of their days.

Staff accommodate patient's wishes as much as possible.

"If they want to be around lots of music, we will do that," said Cook. "If they want their families to sleep here overnight, we allow that."

She said many patients ask to die at home. In most cases, home care makes that possible.

One caregiver quoted in Cook's thesis said medical staff at Stanton went beyond the call of duty to accommodate her spouse.

Her husband's condition had deteriorated to the point where he couldn't go home for Christmas. So the nurses arranged a Christmas dinner in the hospital's chapel for the patient, his family and friends.

"To me, that was going out of their way to accommodate us," said the woman. "That really stuck out in my head that they would go the extra mile."

The patients Cook interviewed deeply appreciated acts of kindness like this. However, not all of the experiences reported were positive.

One caregiver said a physician treated her dying friend like a nuisance, and kept checking his watch during an appointment.

"Unfortunately, that stuck in her friend's mind," said Cook.

A nurse's perspective

Karen Fulmore, the clinical co-ordinator of the medicine unit at Stanton, has 20 years experience working with palliative care patients.

Death doesn't make her uncomfortable. And she finds it rewarding to help patients and their families cope with death.

Sometimes a patient's death affects her more than others.

"You develop a bond with some of them," she explained. "They become almost like extended family."

It's particularly hard if a patient hasn't accepted death, is very afraid or dies with unfinished business. Watching patients struggling with that is tough, she said.

Patients sometimes ask nurses to make last-minute phone calls to estranged relatives. In some cases, family members fly long distances to reconcile. It's not uncommon for patients to hang on until the relative arrives and they make peace with each other.

But there are also patients who remain in denial until the very end, said Fulmore.

"Our biggest wish for patients is to accept it," said Fulmore. "But we're not trying to change them. If that's where they're at, that's what we work with.

"It's just more peaceful if they've accepted it."