Dying people often fear death

Staff guide palliative care patients and families through the dying transition

By BILL GLEN
WCR Staff Writer
Edmonton

Janice Chobanuk knows the men and women treating palliative care patients are true heroes.

The former manager of the 22-bed Mel Miller Hospice in the Edmonton General Continuing Care Centre, Chobanuk travels about the Caritas Health Group and the Capital Health region to help maintain the highest possible quality of life for as long as life remains in palliative care patients.

Die with dignity

"I must take my hat off to the staff because they do such an honourable thing. Not everyone can work with people who are dying."

This includes bereavement support staff who console distraught family members on a daily basis. The cries of the family can, at times, become almost overwhelming.

Palliative care attempts to relieve suffering and improve the quality of living and dying. Patients can receive care in their own homes where care is provided collaboratively with the family physician, consultants, nurses and therapists.

There is a 14-bed tertiary palliative care unit at the Grey Nuns Community Hospital, whose primary focus is to treat people with the most complex palliative physical and psycho-social issues in northern Alberta.

Those patients admitted to the hospice, young and old, predominantly suffer from terminal cancer and are not expected to live much longer.

But it does happen that a person recovers well enough after a month or two of hospice palliative care, and is discharged to a continuing care facility, or returns home.

Moments like this give Elaine Ferguson hope.

"Some people come in and they look pretty close (to dying) and they do exceedingly well," said Ferguson, a physiotherapist at Mel Miller.

"I don't know if it's mind over matter with the patient, but it gives me a feeling that what I do is really worthwhile. Helping them get better is a real boost, seeing the hope and the drive in them. I suppose it is the will of God that allows them to get better."

Occupational therapist Dale Blue agrees. "Elaine and I look at the quality of a person's life while they are alive," he said. "We treat them all as unique individuals."

People admitted to hospice are under a lot of stress, trying to come to terms with end-of-life issues. But learning about them on a day-to-day basis is a great honour for Chobanuk because it is such a personal and private time in someone's life.

"How many people open the door when they are dying?

"It might be a homeless person or someone dying from a communicable disease. Regardless, the staff opens up their hearts to each person to give the best of care possible. You really recognize the wonderful skills and unique qualities they have."

But such attentive caring comes at a price. Over a three-day period recently, seven residents of Mel Miller died. It was a natural occurrence that left the staff reeling for several days. It was difficult for them to lose so many people and attend to the grieving families.

Chobanuk helped install a program to assist the staff during those troubled moments.

"We pulled the team together to determine how to improve morale and help them deal with multiple deaths, day after day, and the families who are under such tremendous distress," she said. "They came up with several strategies and we put them together into a program that includes bringing in a bereavement counsellor for the staff. We call it Caring for the Caregiver."

There are educational sessions where staff are advised how to help families cope with stress and how to establish their own professional boundaries.

There are fun theme days, like silly hat day, involving the patients and their families who vote on their favourite. It helps to break the monotony.

"While I was manager, we once had 22 deaths in a single month. That's a lot of stress," Chobanuk said.

"So now we put on a palliative week celebration, handing out pieces of cake. We have a tea for special occasions where family members whose loved ones died years ago, return to celebrate."

Even the dog is welcome

"And that includes the dog or the fish, because they come over and spend the night many times," Chobanuk said.

Integrating the philosophy and principles of palliative care learned through the Mel Miller Hospice, into continuing care, is Chobanuk's goal. The hospice, built in 1985, was the first of its kind in the Edmonton area and much of what Chobanuk has to offer was gained through experience.

"The elderly deserve palliative care just as much as the people who end up in hospice because some of them are going to die in a long-term care facility," she said.

"We are trying to take new science and knowledge, as well as the psycho-social and spiritual issues we gained in hospice, and integrate them into long-term care. Everyone deserves to live, and die, with dignity."

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