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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

I Love GOD

  


The best place to say goodbye
Terminally ill spend last days at Grace
Deaths marked with `existential rounds'

 http://www.thestar.com/

DEBRA BLACK
STAFF REPORTER

There are balloons everywhere - red, blue and white balloons tied together like snowflakes, hanging from the ceiling. Flowers adorn the tables, including an arrangement with a pink feather boa. A friend brings miniature yellow orchids. Another, a present of framed butterflies.
On the table for guests: a carrot cake with birthday candles, party sandwiches, red jellybeans and a bottle of Irish whisky.

Murray Cooper, his skin yellowed and papery, sits in an overstuffed chair, relishing his 55th birthday party. It's Friday, Nov. 26. Cooper, weak and skeletal, is dying. He's in the end stages of liver disease and has hepatitis C and diabetes.
This is the palliative care unit at Toronto Grace Health Centre, where people come to die with grace, dignity and - odd as it sounds - a little bit of joy.
To look at Cooper on this night, decked out in an embroidered blue caftan and grinning from ear to ear, you wouldn't know he had spent much of the day in bed.
He hugs each friend as they make their way into the lounge. This party, he said earlier, is his time to say goodbye.
The grand thing is, I have no regrets," he said, suggesting Frank Sinatra's My Way best sums up his life. "That's what I really feel. ... It's the truth for me."
Peals of laughter fill the room as Cooper and his friends reminisce about Cooper's career as a nightclub owner, a female impersonator and a hair and beauty stylist, and about how they all discoed their way through the '70s.
Down the hall, Jeanne Loutskou, 47, is holding a bedside vigil for her husband, George, whose lung cancer has spread to his brain and spine.

  



She strokes his hand and looks lovingly into his swollen and distorted face. George is her one true love. The couple was married in 1976. She was only 18. He was 22. They have three adult children and! two gra ndchildren. Jeanne cannot imagine life without George. Yet here she is, watching him die.

Every day since the beginning of September she has made the hour-long trip from her home near Dufferin St. and Eglinton Ave.
Every day, she feeds him, talks to him and, when he sleeps, seeks comfort at the hospital's chapel or goes for a walk. Sometimes, she goes shopping.
"I may come back with just a pair of socks," she muses. "But that's okay. I'm not out there to buy anything. I'm just moving."
This Friday started out much the same. Jeanne arrived at noon. Suddenly, George took a turn for the worse. He started having seizures and his fingers began to turn blue.

Jeanne plans to spend the night and the rest of the weekend with him.
"He's a beautiful person," she says. "I try to let go. I know that I have to. I know there has to be a time when I have to tell him to go. And I keep telling him it's okay. I'm going to be okay. The kids are going to be okay.
"The pain is so deep. It's hard to explain to people. Your whole life has changed. Cancer hasn't just taken him, it's taken our family."
It is within the rooms of this ward at the Grace that the contrast of life and death is sharpest - the irony of a birthday party for a dying man and a wife's struggle to say goodbye to her husband. They occur almost simultaneously.

"There is so much going on in palliative care that is beautiful, soft and nurturing," said Deborah Randall-Wood, patient care manager at the Grace, which is run by the Salvation Army. "And so much that is ugly and dirty and messy and smelly. And to be able to see the fullness of it ... that's important. ... The whole notion of living until someone dies, that's very much a given."

The philosophy of palliative care is "based on relieving distressing symptoms when an illness is no longer responsive to treatments intending to cure," said Donna Spaner, a physician on the ward and part of the hospital's community palliative team.

"But it's much mo! re than just symptom management. It's based on supporting people in a caring environment and attending to their needs (physical, emotional or spiritual) as they change."
Set up in 1979, this unit was the first of its kind in the province. Now it is one of nine hospital palliative care units across Toronto.

Despite such growth, many experts warn that there is a critical shortage of funding for palliative care, whether it be in-home, hospice or hospital-based. There simply aren't enough beds, facilities or services to cope with the wave of death and illness that will come as the baby boom generation ages, they say, and unless something is done, many will face an "ignoble" death.
The Ontario government has just launched a special committee to study public policy on palliative care. Ottawa is also looking at the problem.

"It's all about putting life into their days," Colette Hegarty says of the patients. Hegarty is clinical director of the unit and a palliative care doctor who has worked at the Grace for a decade.   Even as patients are dying, they are encouraged to live out their final days as fully as possible.

For some that means celebrating a birthday, for others it means watching television or reconciling with family members. For yet others, it means eating once-forbidden things or having a cigarette in the patients' lounge.  Most importantly, it means being as pain-free and symptom-free as possible.

"The word `palliative' means to cover or to cloak," Hegarty says. "It's like a soothing blanket one can put on the patient."
Every year, about 220 patients are admitted to the Grace's 19-bed palliative care ward. In a three-week period in November alone, 14 people died here.
Their deaths do not go unmarked.
In a staff meeting room, the names of deceased patients and the dates of their deaths are written on a board.

On the floor, five paper shopping bags full of personal effects, with the names of the deceased written on them in marker, wait ! to be pi cked up.

Their deaths are marked in other ways - during "existential rounds," a weekly meeting where staff and caregivers discuss cases and what they have learned from their patients' final days.   Later in the year, Salvation Army Maj. Phyllis Bobbitt, director of spiritual care, will hold a memorial service in their honour.
Bobbitt plays an integral role in the unit, meeting with patients whether they believe in God or not.

"Whatever their faith, I attempt to meet the patient without my own agenda, meet them where they are and hopefully, as a level of trust builds, help them get through the issues of dying that are common to all palliative patients: loss, separation, grief, letting go and vulnerability," explains Bobbitt, who relies on religious leaders from other faiths as well.

  



"We've had Buddhist monks, rabbis, Hindu and Muslim spiritual leaders here, whatever the patient needs."

Outside the red brick hospital, busy pedestrians juggle shopping bags, Christmas bundles and briefcases as they rush down Bloor St., some stopping only for a moment to purchase a hot dog from a nearby vendor.

Inside, sunlight streams through the windows. There is an air of calm.
There are no heart monitors, no IVs, no major tests, no blood work, no attempts to resuscitate patients. Classical music plays quietly. A Claude Monet poster hangs on the wall. A volunteer makes tea, puts out cookies and offers them to patients and visitors.
At the nurses' station, a team of six nurses, a doctor, a social worker, a physiotherapist and an administrative assistant gather.
It is a remarkably happy group, focused entirely on caring for patients.

"Whatever their needs are, we're going to try to meet them," said Wendy May, a registered nurse and on this particular day the nurse in charge.
"They are heard. If they have pain, we'll give them something. If they just want someone to sit with them and hold their hands, we'll do it." Patient care manager Randall-Wood ! and Howa rd Houston, the unit's administrative assistant, discuss buying new Christmas decorations.
"The tree is absolutely terminal," he jokes.
Houston, who has been working on the unit for 16 years, has the same black sense of humour shared by many of his colleagues.

His own father died on the ward in April. When he got the call saying his father had died in the night, he said to the nurse: "That's a wrap and roll, I guess." In layman's terms, that means it's time to wrap a shroud around a body and roll it on a stretcher to the morgue.

Far from being disrespectful, Houston says later, it's just the way he deals with the final details of death.

Watching someone die, particularly a loved one, is difficult, to say the least.

Earlier in the week, Randall-Wood, who is also a nurse, sat at the foot of a dying patient's bed and helped his family say goodbye.

The patient stopped breathing for long stretches of time, only to suddenly take another breath. His hands changed colour and his nail beds turned blue.

It won't be long, Randall-Wood told family members. They all talked about what an interesting man he was and how even in death he was very much in control. They shared a joke and burst into laughter.

"Being part of that was amazingly beautiful," says Randall-Wood. "Here was this man who was dying, with people who loved him all around. We have so many people who died and there is nobody there for them."
George Loutskou may be unaware of his wife's presence. But she won't let him die alone.
Dark circles frame Jeanne's eyes. Her face is lined, her head bowed, her love palpable as she talks about her husband.
In the past week, he stopped eating and drinking, and he sleeps almost all the time now. Every minute with him is precious, she says. "He's going downhill."

A wedding snapshot shows the couple smiling as they walk down the aisle, Jeanne's white-gloved hand wrapped around George's elbow. George had been in Canada only a year when th! ey marri ed. He had left his native Antartikon, a small village in northern Greece, to build a better life. They thrived together, building a home and raising three sons. The family went on picnics, fishing, and walks in High Park and Scarlett Mills Park.

Now, it is hardest for her when she goes home at night. Her youngest son, who has taken a year off from his studies at Carleton University to help her, usually picks her up. But alone at home, she remains ill at ease.   "I go back to an empty house, and you're looking around and everything reminds you of that person," she says.

"I find in the nights I tend to be more emotionally distraught. I know he would have wanted me to be strong. When he first got sick, his main concern was me and the kids. He said: `Where I'm going, there's no pain. There's nothing to worry about.'"

She praises the care George has received at Grace. "Next to home, this is good. I like the way they care for him. I like the way they pop in all the time. At the beginning I noticed how he smiled at the nurses. He was happy, so that made me happy. They care about him. They care about me. They care about my kids when they come in."

For Murray Cooper, the Grace is a godsend. The ravages of his disease have left him weak and sluggish and his only family, elderly parents, are 680 kilometres away in South Porcupine, near Timmins.
Cooper has lived in London, Rome, Paris and the Bahamas. Now, Grace Hospital is his home. "I'm telling you this is the best hospital food," he says, sitting up in bed, wrapped in a dressing gown and playing with his lunch of stuffed peppers and cream of carrot soup.

Earlier in the week, his friend, actor Dinah Christie, paid a visit.
As he talked, the phone rang. "Hi, darling," he says. "I'm here. You can come here any time of the day or night ... it's just such a beautiful place, you're going to lose it. It's spectacular. It's terribly civilized, not like a hospital."

Cooper is on medication for nausea and p! ain. His disease, say the medical staff, can leave him confused. But he is clear on his flamboyant life.
"I always wanted to be a star," he says. "I became a female impersonator. I had a nightclub called Momma Cooper's. I studied at Marvel Beauty School. I was a hairdresser, makeup artist and stylist."   And he has accepted his fate. 

 

"I have cirrhosis of the liver, diabetes and hepatitis C - any one of those could kill me. Now it's finally caught up to me and I've resigned myself to it. It is what it is. You can't really fight it. You can medicate it; you can slow it down. You can just be very nice to it. But that's about it."
For physician Spaner, it is the way patients and their families deal with death that is truly remarkable.

"In a lot of other areas of life, you don't always see the best in people. When you see people dealing with a lot of adversity, they don't have to try to rise above it. But they do. Often what comes through is a sense of gratitude."

While Spaner's work restores her faith in humanity, it also reminds her that life is short, cruel and can be wrested away in the blink of an eye.
"Every now and then, I think I should really be grateful for the number of days of health I have so far, because I'm getting close to being on bonus time."
George Loutskou died on Sunday, Nov. 28 at 10:30 p.m. Murray Cooper's condition remains the same with some good days and some bad.  ] 

 



 

 

 

 

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