The following is the address that Krista J. Flint gave to Canadian Parliament regarding palliative and compassionate care from the perspective of persons with disabilities.
Why Canadians with Disabilities are Afraid of Canada’s Health Care System
Members of Parliament, Committee Members, Esteemed Presenters and Observers,
Thank-you for the opportunity to address you this evening on the issue of Palliative and Compassionate Care as seen through the lens of disability in this country, and more specifically to engage you in a discussion about how we might as a government and as a people begin a broader public discourse on the implications of a lack of inclusive and appropriate palliative and end of life care for vulnerable people. Also to examine when end-of -life care is not at all appropriate
One can’t begin to imagine how people with disabilities in this country might navigate the maze of palliative and compassionate care in this country without an honest look at the truth about what Canadians think about a life with disabilities. The messages are abundant and scathing and come at us through popular media, entertainment, and through long held, firmly entrenched and largely inaccurate stereotypes about people with disabilities and their quality of life.
Many of us have heard the term “Better dead than Disabled”, heard our colleagues and associates say “I would never want to live if I had to suffer that disability”, we have seen headlines about people with Down syndrome in our National newspapers that read “Doomed from Life to Death”. We only need to consider the general publics sympathy for Robert Latimer who murdered his daughter Tracey who had Cerebral Palsy, or remember the life and death of Terry Shiavo in order to begin to sense the deep and resounding fear, and misconceptions about the quality of life of our fellow citizens who have disabilities. In the current medical scarcity model paradigm that we face as Canadians, citizens with disabilities are seldom seen as “worthy recipients of limited medical resources”
Pity, leads to benevolence, and benevolence make people with disabilities objects of charity. This kind of paradigm creates a power imbalance that is nearly impossible to rectify. Recent public opinion surveys rate having a developmental disability only second to mental illness as the most horrifying condition that Canadians can imagine living with.
As recently as September 11th of this year, the Globe and Mail carried a full-page article regarding Robert Latimer entitled “Mercy Killing Debate is Back with a Vengeance.” In the article they emphasize that 70-80% of the Canadian population did not believe that what Latimer did in taking his own daughters life was murder but rather “Mercy Killing”.
If I may be so bold, as a citizen not currently living with a disability, but having had the tremendous benefit of learning from, and being mentored by some of the most respected and noted scholars and advocates with disabilities, I assert that that Canadians with disabilities do not want to be objects of charity and most certainly do not want their lives characterized as ones which are so bereft of joy or satisfaction that they feel the need for anyone’s “medical mercy”.
Social messages are powerful, they form the bulk of the public consciousness and create the foundations on which people will act regarding all aspects of life. From the obvious, what we consume, whom we will buy from, and whom we will give to, to the subtler, what will solicit an emotional response from us? Who we love and care for and ultimately whom we will hate and fear? Social messaging has an amazing ability to change our actions as individuals, community members, and as Canadians.
To be perfectly frank, citizens living with significant and medically complicated disabilities are terrified to enter into hospitals in this country. The situation is particularly dire for those that have communication barriers, and for those whose lives are largely dominated and determined by paid service delivery organizations and staff.
My personal experience is that many citizens with developmental disabilities who receive services from some of the largest service providers in the country wake up everyday with a powerful annotation attached to their existence. These citizens who have paying jobs, who live in homes they have chosen with the support of staff, have Do Not Resuscitate Orders (DNR) on their personal cumulative and emergency files either within the office of the Public Guardian or on the working files within these organizations. These community members who have been labeled as having a disability are not sick, they do not live with life ending, chronic diseases, they simply live with a disability.
Being disabled represents a variation in the human family that has always existed. That may not be the case going forward. With ‘advances’ in pre-natal screening and the overwhelming incidences of a “curative” approach to disability, my children’s children may not have the privilege of living in a community that includes citizens with disabilities. We know that currently 80-95% of pregnancies with an early determination of Down syndrome will be terminated. In Canada the Protection of Persons in Care Act research tells us that approx. 82% of women with disabilities will be sexually assaulted before the age of 18.
As an example of the tragedy that can stem from this kind paradigm, on May 15th 2001, John entered into a Child Protective Service system in Canada. A system made of well-intentioned, kind individuals, who care deeply about the welfare of Canada’s children, a system, none-the-less, unable to see past John’s label of Down syndrome. John became ill, with all the harbingers of a childhood flu that sends all of us parents scrambling to make arrangements to be away from work so we can be with our babies. The service delivery model saw John’s illness as a result of an opportunistic virus, which because he had Down syndrome his body had greater difficulty fighting. As John became sicker, they saw his lethargy as part of the physiology of Down syndrome. As he became weaker and sicker still, they saw his unresponsiveness as a result of delayed cognitive and speech development, in their opinion inherent in Down syndrome.
When John’s tiny two-year-old body got too sick to fight, the fatality inquest ruled that his death on August 15th 2003 was, in their words, “inevitable”.
Our Palliative Care Systems in Canada are no better prepared for the complex needs of someone with a developmental disability, communication barrier, medically fragile disability, or mental illness.
A recent Irish study on palliative care provided to citizens with developmental disabilities found that
Fifty-nine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived ‘differences’ and ‘difficulties’ in the provision of care.
This study has demonstrated that despite a willingness to provide palliative care to people with intellectual disabilities, staff lacks experience and confidence in their ability to do so. While experience appears to have a positive impact on staff levels of confidence, staff are not offered sufficient opportunity to ensure that isolated interactions translate into organization wide learning. Although participants spoke of their willingness to work in partnership, a shared desire to cooperate does not appear to be sufficient to guarantee effective collaboration. Focused efforts should be directed at building relationships between intellectual disability and palliative care organizations in order to ensure equity of access and delivery of high quality palliative care services.
Clearly an unmistakable sense of “otherness” remains at the heart of our best intentions to provide interventions, supports and care to citizens with developmental disabilities at the end of their lives. This paradigm presents a formidable barrier for those of us engaged in this imperative work.
The November 2002 Romanow Report included four key recommendations,
1. Continuity and coordination of care
2. Early detection and action
3. Better information needs and outcomes
4. New and stronger incentives
But before we can address what we know to be true about our systems ineptitudes to accommodate what citizens with disabilities really require of quality, timely and appropriate palliative and end of life care, before we can create “New and stronger incentives” for change, we desperately need to emphasize three points in the consciousness of the Canadian public.
1. That being disabled does not mean you are suffering or sick.
2. That living with a disability is not a death sentence, that citizens with disabilities can and do live richly rewarding lives. Lives punctuated by reciprocal relationships, great joy, profound sadness, and most importantly the powerfully ordinary milestones of aging, changing, and navigating the world.
3. Pain control and good quality, appropriate and timely end of life care is what all citizens’ want-disabled or not.
There are points of light that continue to emerge from the darkness. Organizations like the “Vulnerable Persons Network” out of Manitoba, the “What Sorts of People…(ought to exist) Network” out of Alberta and countless initiatives inspired by my esteemed colleagues at both the Canadian Association for Community Living and the Canadian Council on Disabilities. Issues like “Supported Decision Making and Guardianship”, “Inclusive Education”, “Death making in Canadian Media and policy” are making a difference in eroding those damaging stereotypes.
Social marketing campaigns like “Everyone Belongs”, “No Excuses”, “More Alike Than Different”, and “Celebrate Being” have (in their limited markets) created some momentum on end of life and quality of life issues, pertaining to citizens with disabilities living in Canada and around the world. But they have failed to garner national attention and to solicit broader public discourse.
Great government and private sector partnerships in social marketing campaigns have changed society in Canada.” Particip-Action”, “Anti-smoking” and more recently “Right to Play”, have succeeded in changing not just the way we see each other but most emphatically how we treat each other.
Greater collaboration, government endorsement and funding, consistent shared value messaging, and broader investment from other regulatory and policy making bodies is desperately needed to create a dialogue among Canadians which would have the capacity to change the world for our children and our children’s children.
It is indeed the highest honor to be asked to serve ones country in this capacity and I hope I have provided you with what I believe to be both issues arising from this extremely contentious issue and some strategies that might be considered going forward.
Krista J. Flint
Inclusive Humanity Canada
Palliative Medicine, An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities.
Palliat Med 2010 24: 566 originally published online 17 June 2010
Karen Ryan, John McEvoy, Suzanne Guerin and Philip Dodd