Palliative care softens dying

The patients 'run the show' in this specialized city medical unit

By RENATO GANDIA
WCR Staff Writer
Edmonton

"They give excellent care here," said the 71-year-old retired railroad worker from St. Paul. "They have wonderful doctors as well."

Arsenault still manages to walk around when he feels like it. Sometimes he watches hockey on television or listens to music from his stereo.

He can enjoy this caring environment because he is one of the many patients in the Edmonton Palliative Care Program within the Caritas Health Group. His hospital room at Grey Nuns will be his temporary home for some time. And for Arsenault, it is home.

But if he had been a palliative patient in 1995, he would have been one of the 80 per cent of Edmonton's terminally ill cancer patients who died in acute care beds without integrated palliative care.

Now, due to the hard work of the visionaries within the health group, Arsenault is one of the 90 per cent of Edmonton's terminally ill patients who are given integrated quality care.

Palliative care in Edmonton started at the General Hospital in the tradition of the Grey Nuns Sisters in 1982.

It was one of a kind back then: funded independently, used interdisciplinary approach; aimed at making patients as comfortable as possible at a time when their life is ending.

A service now also offered at hospitals other than the Edmonton General, the system was regionalized in 1995, creating 57 hospice beds. Edmonton General has 22, Norwood Hospital has 20, St. Joseph's Hospital has 14 and one is in St. Albert's Youville Home.

Grey Nuns' 14-bed facility became the palliative tertiary care unit - the ICU of palliative care. Patients are referred to Grey Nuns only whenever primary care givers are having a hard time managing symptoms.

"Here, we give more personal care because we connect with the patients deeper than in an active treatment facility." - Janet Kljajic

Because of its innovative approach and research-based and patient-focused care, Grey Nuns is a world leader in palliative care.

Professionals such as physicians, nurses, social workers and dietitians from around the globe come to study this facility - from Argentina, Bulgaria, Chile, England, Georgia, Italy, Japan, Mexico, South Africa, Switzerland.

Karen MacMillan, manager of the unit, said, "Our practice has become evidence-based. We have to research to back up what we are doing.

"We're looking at controlling symptoms so that the person living with a terminal illness can get the best quality of life. We consider what's important for them and what is meaningful for them."

The philosophy behind their care is "let the patient run the show" which means patients direct their care.

"Patients and family probably have taught me more about nursing than any textbook or any class I've been to," said MacMillan.

She began her palliative career as an oncology nurse at the Cross Cancer Institute.

MacMillan learned how important it is to find out who a person was before coming to the unit when she cared for a 20-year-old woman with a brain tumor.

Her physical condition caused by the treatment made it hard to connect with the young patient. She couldn't talk and could only point to things. She pointed to a picture of a young girl with beautiful long hair.

MacMillan couldn't understand at first until she realized the patient was showing her how she looked when she was well.

What's their life story?

What did they do before disease struck?

And what is the meaning of their life now that they are close to the end?

These are the kind of questions they try to find answers for when they receive a patient in the unit.

"History and story are very powerful components of care," MacMillan said. "We have to recognize that not only medication can make a difference.

"Sometimes just being with the person makes a lot of difference.

"I think you connect with their soul and with their spirit."

Although a world leader in palliative care, the unit wants to keep improving its care. MacMillan wants to enhance the way they assess any psychosocial distress of patients and discover how best to care for that.

Physical symptoms are easier to manage. It's the emotional and spiritual components that are more difficult, she said.

"Here, we give more personal care because we connect with the patients deeper than in an active treatment facility where you're always busy and in a rush," explained Janet Kljajic, a nurse at the unit.

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