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.