Leading the way in Health Care Consulting & Training
Learning How to Help Us Die

Stuart Laidlaw, Toronto Star, Saturday June 16, 2007

GUELPH–All around the conference room, amid the stacking chairs and jugs of ice water, boxes of tissue are strategically located so all have easy access.

"Much of what we're dealing with will stir up powerful personal feelings, so make use," says grief counselor Nancy Gingerich, one of the opening workshop leaders at this palliative care conference. Gingerich deals with children and grief, one of the toughest areas in the challenging and fast growing field of end-of-life care. There are a few titters and jokes about the tissues at first, but before long they are put to good use.

"There's no such thing as getting over your grief," Gingerich tells them. It's seems part warning, part reassurance. "Grief changes you. The loss of someone significant changes you."

About 200 nurses, social workers, hospital volunteers, doctors and clergy gathered from across southwestern Ontario earlier this week to learn how to better serve their patients, and to help their families through the grief process. The need for end-of-life care is growing fast and is expected to boom in coming years as baby boomers age and medical advances keep death at bay longer. All this is happening, however, just as traditional support systems – faith groups and extended families – are less available.

"A lot of people fear dying more than death," says Jayne Harvey, a nurse before becoming a grief counselor. In her work, Harvey helps families cope with the pending death of a loved one, and to help them make that death as comfortable and painless – physically and emotionally – as possible. On weekends, she works at a nursing home to keep her skills up.

"Everything I've learned about dying, I've learned from the people I treat," she says. Care for the dying begins, she says, with ensuring they maintain their personal identity through their last days. Too often, the imperatives of health care, tests and pain relief take over – and the personality of the patient is lost on the death bed.

"We deal with people based on how we know them," she says, offering simple advice. "In the face of illness, find the person." To do that, she suggests asking friends and family members what a person was like 20 years ago. What comes back are stories about energy and productivity, of loves and losses and turning points in life that defined that person before the illness took over. Then use that information. A grandmother who has long been a sounding board for the family might be encouraged to continue that role as long as possible, even over the phone. Another, perhaps known for her ever-present smile, might see her room decorated with portraits of her smiling, long after she no longer can.

"Find it, explore it and express it," Harvey says. "You don't have much time, so use every resource you have." Families should think about these things early, and follow through as an illness progresses. "I tell family members to lie on the bed, right beside their loved one, and ask, `Is this where they would want to die?'" she says, then change what is wrong. "Focus on the person. What is it that they will want to see, smell, hear and taste?"

The needs and wants of those gathered around the death bed are important as well, especially children, says Gingerich. "It is important to get to know what their understanding of the situation is," Gingerich says. "Let them teach you what they need."

Children's needs vary with their age and stage of development. Even babies can suffer. In their first months, they learn to trust that their needs will be met, so need lots of caring and holding if a parent is lost at this stage. Older children have different needs. They might think they are somehow at fault and may revert in their development. Teens might need to see a dying relative fight back against the illness. The important thing, Gingerich says, is to understand the needs of the child and to respond to them. And don't worry if the child seems able to keep playing and having fun through the grieving process. "Children process information through play," she says.

Harvey closes her address with an appeal to the caregivers in her audience, many of them volunteers, to advocate for the full time, paid staff dedicated to end-of-life care.

"Without them, palliative care becomes a catheter, a pain pump and a therapeutic bed."

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