Wednesday, May 5, 2010

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.


I must have been living in denial I had no idea that my daughter would not be given life saving treatment if needed. She has always been given only the best treatment by Sickkids Hospital. I feel so sadden reading that adults or kids with disabilities would not be valued and given any medical treatment required especially life saving. Last november my daughter was admitted to sickkids due to distress during the height of H1N1 just be cause she was considered more fragile and more at risk. Her doctors felt more comfortable watching over her for 24 hours then sending her home with antibiotics. I felt like she gets extra care because she needs it and is valued as the beautiful child that she is. All people should be given this kind of medical care. My daughters life is as valuable as any other child. Poor Daisy and her family I jumped over and read her story and I sit here in tears.

Our family has been SO fortunate in that not only has our son been given thorough medical care, but us, his parents, have been given great opportunity and support as well.

The flip side of our experience with having a son with Down syndrome is that there is a fraction of medical personnel that disregard Gabriel as a person first, (very evident in the language used as well as outright attitude towards a child that is not "normal"...). It is this small fraction of people that I fear when Gabriel is an independent adult needing medical care.

I simply cannot believe the callousness behind the words said to Daisy's parents. In my five years of being mom to a child with special needs, I don't think I've ever heard something so harsh and so desperately heartbreaking...

I could hardly read this post. But thank you for posting it --

"It's almost like losing a child." - This is one of the most hurtful and outrageous things I've ever heard. I read this article a couple days ago when you posted it, but it left me speechless.

Hello Everyone,

For those of you who don't know me, My name is Matthew Kamaratakis, but those who love and cherish me simply call me, "Matt." I am an adult, born with Cerebral Palsy, but have always considered myself to be: "'A person', first and foremost, who has a disability, and not a disabled person." I love books and the movies. I am also passionate about questioning the status quo, assisting my fellow man by any means possible, and bettering myself with every waking breath.

However, balancing my intellect and compassion, as I believe the two should rarely be separated, has not been easy due to my physical disability. For instance, I've spent several years studying at university, but was unable to complete my studies or obtain a degree, as I have wathed my physical health deteriorate. Hence, I know find myself needing a third major surgery and will most likely encounter many of the difficulties stated above.

Nevertheless, I graciously ask that each and everyone of you, taking the time to read my humble submission, "to not shed a tear of sorrow, but ones of utter joy, as my experieces have led to the most beautiful of silver linings. First, my time away from school has allowed me to help people through writing (much like this blog), as it is not only my greatest gift but a labour of love. Second, although I am waiting to be referred to an orthopaedic surgeon by the head of physiatry at Sunnybrook Hospital, I believe that I've already found my surgeon; he is a man like me, who has yet again proven these unerring and interminable words: Reason and compassion must rarely be seperated. He is the same man and doctor who operated on a boy we love and wish the speediest of recoveries, for Where would any of us be without Ben or Louise? Sometimes, on the most heartfelt of occasions saying, "'Thank you' is not enough, but it's all we have --thanks guys. Third, I have dicided to work and write where I am needed most, as I've applied to George Brown College, to be obtain a degree in Medical Administration. This will enable me to become a productive member of society, as I plan to be much more than a pencil-pusher. For, I can see myself working by day and visiting patients in my spare time. I'll use all of what I see, feel and experience not merely to tell a story, but to inspire and empower the the human spirit. And, I'm also going to love those times where no writing or talking is required: I will simply, but wholeheartedly, gaze into the eyes of another to say, "I've been where you are, and everything is going to be okay."

All life is precious, different, and equal. Some lives, especially people like Ben, are worth dying for.

With all I have to give,