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Hospice and Palliative Care: Helping People Die

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No one needs to die in pain. That’s what the hospice social worker told me, as I signed the papers that would put my dad on hospice care. No one needs to die in pain. That’s the mantra of hospice, and it became my mantra, as well. I had to believe it, as my dad had suffered so much.

For weeks, each time I walked into Dad’s room in the nursing home, he’d be rigid in bed, up on one elbow and slamming his fist against his hand. Pow! Pow! Pow! Over and over, he pounded fist against hand. I’d try to get him to relax; to lie back. He couldn’t comprehend. Pow! Pow! Pow! He was trying to knock out the pain.

Dad was in Rosewood, where he’d lived since the brain surgery that was to correct the results of a World War II brain injury, compounded by age, failed. Dad went into surgery foggy, from fluid building up behind scar tissue. We soon learned that, while the surgery was medically successful – the shunt that was inserted into his brain to drain the fluid worked – Dad suffered from what I call “instant dementia.”  He needed complete nursing home care.
 
Each time I saw him in such an agitated state, I would hurry from his room, back out into the hall to talk with the nurse. Had the doctor been in yet? Had he seen Dad like this? Would he please help us get Dad on hospice?
 
“Dad’s in pain, Sarita. It’s obvious. Can’t the doctor give him something?” I’d say.
 
“I know,” she’d answer. “He’s in pain. We know him and can see it. The doctor looks at the records and says he sleeps so much, he can’t be in pain.”
 
“But look at him!” I’d plead, choking on tears. 
“I know,” she said. “I know. We’re working on it.”
 
We knew Dad was wearing down. He didn’t have long to live. But did he have to be in such pain? I wanted him under hospice care. The doctor said he wasn’t ready.
 
One day, while I was working at my newspaper job, the phone rang. It was the head nurse from Rosewood. She said, “Carol, we did it! He’s going on hospice. Can hospice call you at work? If you can do the paperwork now, we’ll get him started.”

A hospice social worker called me at work, and even came up to my office for the initial interview. I did the paper work, and met the hospice people, after work, at Rosewood.

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JenJilks said
Jan 2, 2009

Great article, Carol. This is a huge issue.

I know that my father was in pain. In his case he sang, LOUDLY, when he was experiencing it. I had to fight long and hard, but fight I did - for more pain relief. I wish I had fought harder and sooner. My deepest regret.

I did figure out how to work through the Ontario health care system. It was not easy.

MindingOurElders said
Jan 2, 2009

Thanks, Jen.

Fighting for pain relief is hard. I had to fight to get the doctor to put my dad on hospice care, even though the nursing home people knew he should be. The doctor said he slept, therefore he wasn't in pain! Nonsense. It was obvious that he was in pain.

As soon as he was under hospice care (with the help of a very tenacious nurse), he relaxed and was able to receive the love offered. His pain was abated. But it was a long fight.

We all have regrets. I regret I didn't touch more than I did. I had so much to "do" with so many people needing me. I should have slowed down and touched more. But I can't go back.

We can both share with others our triumphs and regrets. That's how we move forward.
Carol

kimisme said
Nov 4, 2009

i have been thinking that i would like to help people cross over. to give comfort & help them pass peacefully.
could this be a job.
i feel it would be very fullfilling to do this.

JenJilks said
Nov 4, 2009

There are a great many Hospice groups across the continent. They run (in Canada) on 30% taxpayer dollars, and depend upon donations. Volunteers are given mileage in return for their time and energy. There are various training programs, peculiar to each district or region. For example: http://www.nhpco.org/

All health care practitioners SHOULD be trained in end-of-life and geriatric care, but many are not required to have these specific qualifications.

MindingOurElders said
Nov 4, 2009

Hospices have volunteers and hire people, so it could be a paying job. To be hired, you'd need some training. But it's a rewarding field for many.

Carol

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