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INTRODUCINGinfant program september 2010 september 2010

@ 31 marshall st., richmond hill 905.770.8510@ 31 marshall st., richmond hill 905.770.8510

BY KIM ZARZOURkzarzour@yrmg.com

What is a good death?Dr. Brian Berger and Anne-Marie Dean

haven’t experienced it personally yet, but they’ve witnessed it often enough to have a pretty good idea of what a good death isn’t.

It’s not frantic heroic efforts; it’s not ago-nizing pain, fear or gasping for breath.

It’s not looking upon the loss of life as a failure.

Death, say the Richmond Hill palliative care experts, can be gentle and good and it is always inevitable. And death, they say, can teach you a great deal about life.

Dr. Berger was a family practitioner in Uxbridge when he observed how often patients who are dying are shunted aside by the medical world.

“It was happening because we couldn’t do anything for them,” he says. “But my gut told me it was the wrong thing, it’s not how we are trained, to comfort and care for others. This shouldn’t be a horrific time of being pushed aside.”

The physician decided to specialize in pal-liative care and is now chief of continuing care at York Central Hospital.

His patients are dealing with end-stage Alzheimers, dementia, renal failure, ALS, or heart and lung ailments along with some families of newborns with multiple disabili-ties. He visits them at Hill House Hospice, local hospitals and private homes.

AN HONOUR TO ACCOMPANY THEM

Far from being burdensome, he says, it is an honour to accompany them on their final journey.

Sometimes it is sad, he admits, and at times he gets close to the dying, tells them he will miss them, cries and feels their pain.

But seeing a family at one of life’s crises has a certain reward. “It’s like birth in a way,” he says; as a family doctor, he gets to see life at both ends, a witness to the full cycle of life.

Anne-Marie Dean has had similar expe-riences as executive director of Hill House Hospice. “It can be sad, but it’s not tragic ... Although death is going on around us, life is going on around us too. People live in those beds,” she says, referring to the three pallia-tive care beds in the home. “They die in just a moment.”

“Unfortunately we are a dying- and death-phobic society,” adds Dr. Berger. “We tend to push it aside as if it’s not going to happen and we don’t want to face up to it. We need to learn to accept the inevitable, that you live until you die.

“There are lots of things modern medicine has done that are very positive but we tend to think we can go on forever ... everything is done to fight death. It’s all about IV poles and call the doc and Code Blue but that’s not necessarily how it should be.”

Dr. Berger says that doctors sometimes have discomfort with dying because they see it as failure. But if a family physician doesn’t stay involved with a patient whose health is so dire that he can no longer visit the doctor’s office, the dying patient may feel abandoned, he says.

WHAT A DIFFERENCE COMFORT CAN MAKE

Now Dr. Berger teaches doctors and hospi-tal staff about the importance of maintaining contact and end-of-life care, explaining what a difference comfort can make.

And according to a recent study, this coun-try could use some teaching about death. The Quality of Death Index, the first-ever global study released last month, found Canada ranks ninth in the world, with the U.K. as the best place to die.

“In Western societies death has become medicalized and curative procedures are often prioritized ahead of hospice care,” the report said. Hospice care is often associated with “giving up” and relies heavily on charity for support but, the report warns, it will be needed more and more as the world’s popula-tion ages.

LISTENING TO THEIR STORIES

Dr. Berger and Ms Dean agree that hospice care is more than just managing pain. It’s managing the fear, questions and turmoil of emotions among those who are facing death. And, maybe most importantly, it is listening to their stories.

“There’s a lot more to an individual than just symptoms,” Dr. Berger says.

He tells of one woman, a prostitute and drug addict who had HIV, whose dying days may have been some of her best.

She was reunited with her children who were in foster care and reconnected with her father she hadn’t seen in many years. Her brother said later that those three months in palliative care were good ones, where she

never felt ostracized and was treated as spe-cial.

“It’s hard to lose someone you love,” Dr. Berger says, “but the higher degree of love and caring is knowing when to let go, as long as you do whatever you do with love and com-passion in your heart.”

‘I understand better what’s important in life and I don’t make mountains out of molehills ... Life is short. Play hard.’

That’s one of the things that this job of car-ing for the dying has taught him — that love is the most powerful medicine there is, and that sometimes the best care comes from holding hands, reading, music or telling stories.

Ms Dean agrees. Palliative care is not mending bones, it’s healing hearts and mend-ing feelings, she says. If a patient in the hos-pice wants a rye and Coke or a cigarette, they’re free to, she says. “It’s not up to us to judge them.

“I think I understand better what’s impor-tant in life and I don’t make mountains out of molehills ... Life is short. Play hard.”

If her grandson wants to play and the house is a mess, she plays. “And I don’t buy cheap wine anymore,” she adds with a smile.

“You prioritize because you don’t know what’s around the corner. I try to expect the unexpected and be prepared and hope that

I’ll be able to handle whatever is thrown at me.”

As she talks, a spider drops down from an overhead tree bough and she freaks — then laughs. “I’m not afraid of death, but I am afraid of a spider.”

On a more serious note, she adds that while life is not eternal, she has learned that hope is.

“What the dying have taught me is there’s always hope. First there’s hope for a cure, then there’s hope for a gentle death, then there’s hope to be remembered. Nobody ever gives up hope.”

There are seven visiting hospices in York Region and one residential hospice, located in Richmond Hill. For information on services near you, contact www.palcarenetwork.org

GOOD TO KNOWl In Canada, only 16 to 30 per cent of Canadians who die have access to or receive hospice palliative end-of-life care l Although ranking high in terms of avail-ability to pain medications, Canada rates poorly on the cost of end-of-life care with families shouldering 25 per cent of the total cost of palliative care l Studies show most Canadians would pre-fer to die at home surrounded by their loved ones, but most deaths will occur in hospitals or long-term facilities

Canadian Hospice Palliative Care Association

Anne-Marie Dean, executive director of Hill House Hospice and Dr. Brian Berger, palliative care physician, discuss a patient’s chart with administrator Judy Ford in the hospice kitchen.

STAFF PHOTO/STEVE SOMERVILLE

Part 2: Life lessons learned at death’s door

Caring for the dying offers special rewards

The Long and Winding Road

Hospice Richmond Hill is inviting caregivers of those living with life-threatening illness to visit a twice monthly drop-in support group. Caregivers can meet over a cup of tea or coffee to discuss issues, challenges, triumphs and receive support and advice while caring for a loved one.

The program is offered the second and fourth Tuesday of the month from 1:30-3 p.m. at Hospice Richmond Hill, at the Community Support Centre, 10155 Yonge St..

For information or to register, call Jennifer, program co-ordinator at 905-884-6683 ext. 222 or email jen-nifer@hospicerh.org

Anne-Marie Dean, exec. director Hill House