When negative attitudes compromise care

Today we have a guest blog from Dr. Dick Sobsey, a professor of educational psychology at the University of Alberta, where he’s also associate director of the JP Das Developmental Disabilities Centre and director of the John Dossetor Health Ethics Centre. Dick’s son Dave, 19, has multiple disabilities. Dick’s research looks at violence against people with disability; ethical issues related to disability; families of children with disabilities; and inclusion. He’s a keynote speaker at a workshop later this month called Life and Death Matters: The Immediate Threat to People who have a Disability and the Need for Action. It’s part of Community Living Ontario’s annual conference.

The workshop addresses how children and adults with disabilities may be devalued in the health-care system, and how negative attitudes about disability can be life-threatening if they compromise care.

This is a sobering piece and one that reminds us that outside the doors of rehab hospitals like Bloorview, attitudes about disability are often based on stereotypes and ignorance. Thank you for sharing this with us Dick!

You may be interested in this excellent related article from The Lancet journal last year: Disability and the training of health professionals. Louise

When negative attitudes compromise care
By Dr. Dick Sobsey

Can you imagine living in a country where some children and adults are denied essential health care simply because they have disabilities?

What would it be like to find out that your baby’s death resulted from a lethal dose of narcotics?

How would you feel if doctors asked if you wanted to withhold lifesaving treatment from your daughter and you said “no,” but they withheld it anyway?

Imagine being told that because your son is now an adult, he’s no longer eligible for the dialysis that was provided through pediatric services a few weeks earlier?

What would you do if you were told that your daughter with severe pneumonia would be made comfortable while she died because someone without a disability might later need the respirator she requires?

All but the last of these things have happened in Canada, despite the Canadian Charter of Rights and Freedoms, The Convention on the Rights of the Child, and the Convention on the Rights of Persons with Disabilities, which agree that children with developmental or physical disabilities are entitled to the same health care as all citizens. The last scenario is part of a triage protocol for critical care during an influenza pandemic published in the Canadian Medical Association Journal in 2009, and adopted by many Canadian hospitals. It indicates that patients “who may benefit from admission to critical care” will be denied it if they have severe cognitive impairment, advanced neuromuscular disease like muscular dystrophy, or quadriplegia.

On Friday, May 28, 2010, Community Living Ontario will present Life and Death Matters, a full-day program to discuss these issues, their root causes, and what can be done to change the situation.

There are many excellent and dedicated health-care professionals out there who make every effort to provide the best possible health care to ALL Canadians, including those with disabilities. Some have recognized the problems faced by people with disabilities and their families and worked to make improvements. For example, in 2006, Consensus guidelines for primary health care of adults with developmental disabilities were published. These state:

“…adults with developmental disabilities (DD) require more attention from health-care providers and have a greater need for health care resources than adults in the general population. Without adequate primary care, the health issues of people with DD often go unrecognized. Even when identified, these issues are often inadequately or inappropriately addressed. Such disparities between adults with DD and the general population substantially increase risk for preventable illnesses and premature death among the former.”

Canada is not alone in this. In 2002, the Surgeon General of the United States published Closing the Gap which reported:

“Americans with (intellectual disabilities), and their families, face enormous obstacles in seeking the kind of basic health care that many of us take for granted. Unfortunately, societal misunderstanding of (intellectual disabilities), even by many health-care providers, contributes to the terrible burden.”

In 2007, the United Kingdom’s Mencap published Death by Indifference, detailing cases of people with developmental disabilities who died because they could not access quality health care services. In describing one of these cases, it reports:

“We believe that the real, underlying cause of Mark’s death – and those of many other people with (an intellectual disability) who die in hospital – is the widespread ignorance and indifference throughout our healthcare services towards people with (an intellectual disability), and their families and carers. We say that this is a national disgrace. We say this is institutional discrimination.”

In spite of these efforts to identify and respond to the problem, little actual progress has been made. Most health care providers and members of the general public simply don’t care enough about these problems to make it a priority.

This quote from a grieving British mother sums up the attitude of too many health-care providers: “When my 9-year-old daughter Daisy died, a doctor at the hospital said to me: ‘It's almost like losing a child.’ What did he think my beautiful daughter was?”

Join us on Friday May 28 to discuss these issues with a host of North American experts.

Register here.

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I am one of you

I am one of you
By Louise Kinross

I used to pass them on my way in, taking a quick smoke. I’d see them around the building wearing track pants and jeans, wet hair air-drying. Sometimes there was exhaustion and desperation in their eyes. Other times elation: their child had lived through a catastrophic accident or illness or a miracle had occurred – a tiny movement in a limb, a word.

I got to know some of these parents and I marvelled at their endurance as they camped out at the hospital over weeks, months, sometimes a year or more.

On Friday my son Ben was transferred to Bloorview as an inpatient while he recovers from hip and knee surgery. His situation is small potatoes compared to what many families are coping with.

Yet I was surprised at how vulnerable I felt now that I was one of those parents that I'd watched for so many years. I felt like a fish out of water in the lounge where the families eat meals and store and prepare food. Another mom smiled and showed me where to get things – the straw dispenser, the juices, which side of the fridge families store food on. It was our first day and this mom said she’d been living here with her son for 10 weeks. Ten weeks!

Colleagues who would now be my son’s therapists or nurses came to visit. A woman compassionately cleaned my son’s wound. I’d seen her in the halls before but I’d never known what she did. Another nurse freshened him up with a sponge bath; he's in a body cast that causes him to sweat profusely. When the night nurse arrived I recognized her name from a former client’s recent tribute, so I knew he was in good hands. Yesterday we were able to drop in on the end of a weekend arts program. The child life specialist brought Ben a bag of gifts and recreation therapists came by to see if he wanted to hang out with others.

Ben's still exhausted and taking naps. He hasn't eaten anything since his surgery. He won't touch a McDonald’s french fry or his favourite old-fashioned Starbucks donut, or any of the numerous foods we’ve brought to entice him. I bribed him to eat half a cherry tomato by telling him I'd buy him a new Star Wars character.

We had a scare last night when his wound began oozing a lot and the nurses didn't have all the information from SickKids about the type of dressing used.

I e-mailed our stellar surgeon (it was Saturday night and he was away at a conference) and he messaged me right back, reassuring me that the oozing was to be expected and that the nurses could pack it with any kind of gauze. I told him he deserved a gold star.

Days can move slowly when your child is hospitalized, especially on the weekend. Our room looks out onto the main doors and parking lot. It’s reassuring to see people come and go and watch the everyday goings-on in the surrounding neighbourhood. I'm grateful for the massive windows that flood the place with light and connect us to the outdoors.

Today Ben and I went for a walk in Spiral Garden, the ravine at the back of the hospital that’s transformed into a magical artist-run camp every summer. There were art projects – strings with shells and sticks and beads – draped in the trees. We hit a row of hanging pipes that make music and I picked a dandelion for Ben. We came upon some materials blowing on a chair in the breeze and Ben picked a sparkly turquoise piece with stars (see above).

It was great to feel the sun on our skin and sit in the cool shade.

Tonight I found myself padding down the third floor hall to the lounge in my socks and track pants. Slowly, I'm getting used to this place.

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'He's trying to tell you something!'

'He's trying to tell you something!'
By Stacey Moffat

When your child doesn’t speak, he can’t talk back. If you swear, you don’t have to worry about him repeating you at an inopportune time. And you always have someone to confide in, someone who will keep your secrets.

It may seem odd to joke about something so serious, and I don’t mean to be flippant about an issue that affects my son Carter (above) so greatly. But to quote Bill Cosby: “Through humour, you can soften some of the worst blows that life delivers.” Carter, 6, has a wonderful sense of humour, so I wanted to preface this piece with something fun.

Here’s the more serious side of it. Having a child who’s non-verbal also means that when he’s sick or upset, he can’t tell me what’s wrong or where it hurts. As a mother, I feel helpless when I can’t comfort my son.

In addition, even though Carter’s adept at communicating through sign language and gestures, only a handful of people are able to understand his unique form of communication.

And he leads a sheltered life. He goes to a regular school but he’s in a developmental education classroom. There, he spends the day with eight classmates, three educational assistants and his teacher. He comes home from school and has therapy for a couple of hours and then he eats supper, plays in the backyard or watches TV. He’s involved in after-school programs for children with special needs.

Carter was born with Pierre Robin Sequence and a cleft palate. He had his cleft palate surgically repaired when he was one. Three years passed, each marked by my husband saying: “I really thought that he would have been talking by now.”

A psycho-educational assessment at four showed that Carter fell within the range of mild to moderate mental retardation. We didn’t find out that he had apraxia until last year when we had him assessed by a speech therapist from the U.S. who specializes in oral-motor issues.

When the therapist diagnosed Carter with childhood apraxia of speech, I cried. Hearing her confirm what I had long suspected made me feel validated. Finally a professional was willing to put a name to my son’s speech disorder.

Other professionals had been forthright in telling me that Carter’s lack of speech had nothing to do with his cleft palate, but when I asked specifically about apraxia, I was given vague responses like: “It’s too early to tell” or “He’s still young. A lot of developing can happen over the next few years.”

Carter takes weekly therapeutic riding lessons. I stand with the other parents watching, full of pride as he circles the arena on his horse, led by two volunteers. He points to things around the arena and signs repeatedly, trying to tell his helpers what colour this or that is, or what animal he sees in pictures displayed on the walls. It breaks my heart to watch him try so hard to make conversation when I know that the volunteers have no idea what he’s saying. They smile politely and walk along with him, guiding his horse and reminding him to hold on.

“But he’s trying to tell you something!” I want to shout. “He’s telling you that little girl’s coat is red. He has to let go of the saddle and use his hand and finger to sign ‘red!’”

The other riders chat with their volunteers as they pass by and I catch myself feeling cheated. These children have such ease in their interactions. My son’s attempts to relate seem so foreign. And then I start thinking about the variety of needs the riders have. I consider the ongoing struggles caused by each disability and I wonder: would I trade my son’s inability to speak for a different disability?

The idea seems ludicrous. I feel guilty and callous just thinking about it. Yet, as a parent, is it not human to experience thoughts like: “I’m so grateful my child doesn’t have that” or “At least my child is able to do this?” In my son’s case, I can list a number of things I’m grateful for.

But I can’t stop myself from longing for the day when I can say: “I’m just grateful that he can talk.”

Stacey Moffat is a teacher, writer and mother to three who lives in Kitchener, Ont.

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Surgery number two

I wrote this yesterday but had trouble with the photo. Mr. Houdini (above) did not cooperate last night and both IVs were eventually removed after D'Arcy had had enough of holding Ben down. We told them the hand IV wouldn't work (he also had one in his foot). We told them he had a phobia. We asked for sedation. We told them it would be bad. But the bad had to happen before it came out.

Surgery number two

This is a photo I took of Ben waiting for his surgery this morning. For a brief moment he forgot about it and laughed at the movie he was watching.

He didn't look anything like this in the recovery room. He lost blood during the surgery and was white, puffy and fragile. Luckily things improved and he avoided a blood transfusion.

The surgeons discovered that part of his hip bone had broken at the place where the screws came out of the hardware installed two weeks ago. Apparently Ben's bones are so soft and weak they feel like an elderly person's.

They put in a new plate and wrapped him in a non-removable fibreglass leg and body cast.

From my earlier posts you'll remember that when he first had hip surgery two weeks ago he was in a removable, two-piece clamshell-like cast. The cast wasn't seen as essential, but it now is! Because of the weakness of his bones we can't risk another failure so he'll be in his cast for six weeks.

We had a dramatic but relatively painless descent from our house on the hill this morning.

Last Thursday when Ben was taken back to hospital because of acute pain, the EMS folks placed him on what's called a scoop stretcher, which is two aluminum boards with side handles. They snap together under the patient. This was used because a regular stretcher couldn't be carried up and down our 29 steps.

It was incredibly painful for him to lie on that hard surface, strapped down, and by the time he got to hospital he'd reached his limit. He was lying on his stomach but they wouldn't let him roll over and wouldn't transfer him to a padded stretcher that was standing right beside him.

The orthopedic clinic was bursting at the seams with waiting kids and parents and he screamed while the person at the desk did papework for his x-ray. Then he was wheeled to wait in the x-ray hall but again was not allowed to be unstrapped. He continued to cry and thrash around hard against the straps and metal that bound him.

The x-ray showed a screw was dislodged and my husband is convinced that Ben damaged the hip hardware during that fiasco.

When it was decided Ben would have the revisionary surgery today, I was petrified that the same EMS folks would insist on transporting him on a scoop stretcher. I talked to the dispatchers at length about my concerns.

Our experience this morning was like night and day. When they arrived, the paramedics questioned why the other folks had put Ben on the scoop and instead suggested a canvas material that acted like a hammock when carried by metal rods that were threaded through its sides.

These two gentlemen were so gentle with Ben. As they positioned him on the canvas, to our surprise, five giant men in overalls trooped upstairs and into the bedroom. Were they part of some backup EMS team?

Six men carried Ben down our stairs and at the bottom the hammock was placed on a padded stretcher. D'Arcy accompanied Ben in the ambulance and I followed behind.

I didn't realize who these burly guys were till I drove up the street behind the ambulance and saw a fire truck parked there. Unbeknownst to us, the firefighters had been called in!

As we drove along a busy Toronto street during rush-hour, I realized the ambulance ahead had its hazard lights on, and was going at a snail's pace. A couple of times it swerved way into the oncoming lane, as if to pass an accident, but as I followed I realized the driver was dodging potholes. A number of times it pulled off to the side of the road. Was the driver trying to get my attention? Was something wrong?

Soon I was four cars ahead of it and I began to worry that perhaps Ben was screaming bloody murder because he hadn't been able to have his heavy-duty pain meds on time (we were told the last dose could be given at 6 a.m.). At a red light I put the car in park, got out and ran the few cars back to the ambulance with the narcotics in my hand. I was stunned when the paramedic rolled down the window and explained that Ben was just fine. He was driving that slowly on purpose. He didn't want Ben to feel the bumps.

As soon as we got to the surgical unit they put Ben on a padded stretcher and instead of lifting him up to extricate the canvas material he was lying on, they slid out the rods and said Ben could keep the canvas. They didn't want to disturb him. They also left Ben wrapped in an orange EMS sheet and blanket (we had mentioned earlier that Ben's favourite holiday is Halloween).

Tonight in his room on the unit Ben was sleeping and his face still seemed puffy, but his cheeks were pink.

He managed to crack his eyes open for a second and signed "When off?" as in "When can I take them off" about the two IVs and, of course, the gigantic cast.

It's so hard to see him go through this again and wonder what he's thinking inside. He refused the sedative we hoped would make him drowsy before going to the OR so I again donned the infection-control "bunny suit" and went in.

I liked the anesthetists so much better this time – they really cared. Still, it wasn't easy, Ben cried and I wondered about how forcing these procedures on him was breaking his spirit.

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'Thank you' will never be enough

In 2008, Ontario gymnast Taylor Lindsay-Noel was on track to compete with the Canadian team in the 2012 Olympics when she broke her neck while attempting a difficult dismount. Taylor, now 16 above, spent 18 months in rehabilitation at Bloorview Kids Rehab and recently wrote and read this tribute to the nurses who worked with her as a goodbye gift. It speaks to the invaluable role our nurses play! Thank you Taylor for sharing with us and congratulations on being home!

The words 'thank you' will never be enough

By Taylor Lindsay-Noel

Somewhere down Kilgour, there is a little place called Bloorview,
I’ve been there 18 months and I have sure enjoyed the view.

I have met a lot of people, some nicer than the rest,
but there is one thing I can say, their staff is by far the best.

The nurses of this hospital have seen me grow and mature,
and it is hard to say goodbye, I’ll miss them for sure.

But enough with the sappy stuff, it’s time to lighten up,
let’s discuss all of those nurses I’ve grown to love so much.

First comes Danielle, that funny energetic gal,
she’s so fun to be around, and she’ll always be my pal.

Diane, oh Diane, we bonded in the kitchen,

we laughed and joked and she showed me she’s still a spring chicken.

Bev, what to say, she’s one of the most down to earth people I know,
when it comes to enjoying life, she is definitely a pro.

Who could forget the infamous Grandma Josie,
she’s always willing to lend a hand and to make you feel cozy.

Next we have Anna, we never got into a scuffle,
I’ll miss her good manners and I’ll miss her Asian Shuffle.

Vee, Virpal Gill, she’s kind, thoughtful and slim,
and she’ll be the perfect nurse when she decides to hit the gym.

Let’s see who’s next, Nasteho of course,
she’s amazing, fun to hang with, and she’s as strong as a horse.

Then comes Michelle, you’ll never catch her in a quarrel,
but if you want to see her mad, just ask her to say SQUIRREL!

Bola, Bola, Bola, Bloorview’s African Beauty,
loved by all and missed when not on duty.

Glenn, O-M-G, that loveable teddy bear,
one of his funniest moments is when he tried combing my hair.

Who's next, of course Sarah who I have most on nights,
she is a pleasure to be around and she’ll make your day bright.

Luz so gentle, so warm, so polite,
she is definitely one to go to when you need good advice.

Auntie Glennis comes next, Bloorview’s residential mom,
she’s loving, huggable, and knows how to keep people calm.

Shawna, she’s spunky, she’s unique and she’s loveable,
her personality is envied by most and she has proven that she is noble.

Melissa is one of those nurses who is guaranteed to make you smile,
she is a person you want as a friend, a nurse you can definitely trust with a child.

All of these nurses who I adore, nonetheless,
but let’s get on with this poem and see who comes next.

Jhanina, oh Jhanina, a water-pusher some patients might say,
I was so deprived from her loving when she was so far away.

Hilary, that girl is a big ball of fun,
she is a pleasure to hang out with, and I’ll miss her a ton.

Carolynn that sweetheart never sees work as a chore,
she’s hardworking, creative and I wish I saw her more.

Lindsay is funny, vigorous, and an overall delight,
and when she’s around you, you won’t want her to leave your sight.

Then comes our singer, her name is Lisa,
she gets a kick out of scaring me, but boy I am going to miss yah!

Tina, my lord how she could make people laugh,
with her on the staff, this place is first class.

Romayne, Romayne I love her so dear,
but the nurses will never forgive her for creating those damn bunny ears!

Next we have Joy, she is a fun-loving character,
she always told me right from wrong and loved playing with my straightener.

Cheryl, she is so out-going, fun and fiery,
and we both enjoy watching our ‘fave’ show V Diaries.

Tracey that jokester knows how to keep the fun flowing,
she’s spontaneous, amazing and no matter what she is always glowing.

Charlotte, she’s a nurse I’ll keep close to my heart,
and when it’s time so goodbye, it’ll be hard for us to part.

Through the hard times, the good times and all in between,

these nurses have proved they are far above supreme.

Their love, their spirit and all of their dedication,

have made it so hard for me to leave this location.

Through my time here at Bloorview I’ve made a lot of friends,
and I am so sad that my time here has come to an end.

To the nurses the words thank-you will never be enough,
and it’s time for me to say goodbye, although it’s so tough.

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Canine companions

A PBS documentary called "Through a Dog's Eyes" airs Wed. April 21 at 8 p.m. ET (check local listings). The documentary shows how five children and adults meet their service dogs and begin new lives together. The documentary was based on a book of the same title by Jennifer Arnold, expected out in September.

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Grace

Thank you Elizabeth, Ellen, Lianna and Sherry for your comments on Ben's homecoming.

I pulled my first all-nighter in years last night: Ben was in terrible pain. He had been weaned to tylenol and by the time I realized he was crashing and went to get the strong pain medication filled, it was too late.

At one point last night Ben started thrashing around in his cast, trying to roll onto his affected leg. We were frightened he would hurt himself and decided to remove the cast. I neglected to mention in my previous posts that Ben didn't need to be in his body cast medically -- for the purpose of bone healing -- but to prevent him from placing any weight on his affected leg. The surgeon made the cast a removable, clam-shell one and told us if we could be sure he wouldn't put weight on his leg, we could take it off.

Ben's pain continued without the cast and as the early morning hours ticked by I started agonizing over whether removing it was the wrong decision. I spoke to the orthopedic resident on call, but despite his reassurance I was fit to be tied. I e-mailed the surgeon, and imagine my relief when I received this message back from him at 9 this morning:

There is nothing wrong with removing the cast, and it's also normal to still have pain. Just having the incisions alone is painful, and they will hurt when he moves, and he can move even in the cast. If he is still uncomfortable, call the residents on call and they can give you a prescription for a stronger pain medication.

It's normal to worry, and it's normal to have pain after this kind of surgery. It's no problem for you to email me or call the residents on call with any questions. If he has more problems today let me know, but if not, call my office and let Kim know on Monday how he is doing.

I was so relieved, I cried, and I suddenly felt capable that I could support Ben through the pain. It was natural that he had great pain (not a reflection of anything we were or weren't doing), and hopefully it would get a little better, everyday. We were acting in Ben's best interest when we removed the cast because we were afraid he would hurt himself.

I went for a walk with my younger son and it was bright and sunny and everything was in bloom, particularly the hydrangeas. I felt like I had been touched by grace.

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