The revolution of patient-centred care

Glasses and a stethoscope laying atop a heart monitor read out

This weekend I was invited to speak on a panel with Dr. Peter Blake at the London Health Sciences Centre (LHSC) Patient and Family Advisor Orientation and Networking Event at Victoria Hospital. The event was part of a larger effort by LHSC to develop ways for current and past patients to provide feedback on the services provided by the hospital, and also to inspire a culture change within the organization to place patients at the centre of the care team–also known as the patient-centred model of care.

The old way of doing things

An older man in a wheelchair looking sad being pushed by a disaffected nurse
I’m not sure what they were going for in this picture, but whatever it was I think we can all agree they NAILED IT

The field of Disability Studies has long picked at the ways the medical establishment subjects and invalidates the voices and experiences of disabled individuals. The prevailing wisdom has been that doctors are the gatekeepers of sacred medical knowledge and it is their duty to deliver the ‘good news’ to any who will listen. But this exchange has long been a top-down hierarchical relationship, in which the doctors “do science” to the body, identifying patient deficiencies (from a clinically safe distance) and plotting a path for their recovery. There is very little room within the medical model of disability for the patient themselves to exist — they are not living, breathing people so much as broken objects to be put back together. The result of this philosophy is that the patients have little say in what “health” means to them and what outcomes they seek from their care. Instead, they must conform to the logic of medical science and capitalist definitions of health and well-being.

The patient-centred care revolution

The medical model philosophy has come under attack in recent years with responses, like the social model of disability, attempting to inject personhood back into this knowledge exchange. The work of disability advocates, along with the rise of target audience centred marketing orientations and capitalist adaptations to the meritocracy of the Internet, has birthed a new way of imagining health care spaces that place the patient at the centre of care. A problem brewing in privatized health care systems of the United States is that patients who are not satisfied with the service they received at a hospital are less likely to return to said hospital in the future, which has obvious economic consequences for the institution. The solution to this problem comes in the form of patient-centred care: an effort to begin listening to the patients to determine if the services being provided align within the expectations and desires of the consumer and make changes accordingly.

At its core, patient-centred care believes that it is the patient, not the doctor, who should be the prime mover of any medical intervention. Patient-centred care believes patients should be aware of all options available to them (and the consequences/side effects of those decisions) so they can make an informed choice about their care and take an active role in defining health care outcomes. This is not an attempt to devalue the specialized knowledge medical practitioners have but rather restructure the power relations (and imbalances) that currently exists between doctors and patients. Medicine should not be something done to people by doctors but something achieved through a collaboration of doctors and patients.

Patient-centred care as resistance

A protest banner that reads "Disabled people fight back! Nothing about us without us"
Photo from the Disability News Service

Of course, at its core, patient-centred care is a public relations effort, aimed at placating the masses and discovering how best to ensure repeat shoppers. But within these neoliberal efforts to develop loyal customers lay the seeds of resistance. As patient voices are given more authority within the system, we slowly are given an opportunity to change and mutate the systems to conform to our desires as opposed to being forced to live within preexisting boundaries. Patient-centred care really can lead to a democratizing of the healthcare experience and injects a personhood that has been sorely lacking for so long.

Although not perfect and still in its infancy, patient-centred care resists neoliberal encroachments into the healthcare field because it demands (and facilitates) an opening up of dialogue around health and well-being that is decidedly people centred rather than profit or efficiency centred. Patient-centred care acknowledges that people have a right to dictate the terms of their care and sometimes perhaps the ‘best’ thing for them is not the most logical. And that’s okay, because we should have the right to decide what happens to our bodies. Patient-centred care reduces the tyranny of the medical profession by placing the decision of ‘value’ within the hands of the patient/consumer themselves — we get to decide what is important for us and not have it forced upon us. Patient-centred care is the embodiment of the rallying cry for disability rights — nothing about us without us.

Finally, patient-centred care is also resistive to neoliberal encroachment because it demands a slowing down of the delivery of medicine. Rather than a conveyor belt of patients pushed rapidly through the system to maximize numbers and efficiencies, patient-centred care demands doctors take time to interact with their patients, explaining in lay terms what is happening and defining individual options. This shifts medicine delivery from a factory-style carousel of diagnosis and treatment options detached from the patient themselves into an actual interaction between people. Medicine is not something we should be striving to deliver faster because it takes time to do it right. Time to think, time to assess, time to allow emotion to wane and logic to prevail. In a medical world driven by patients, we are forced to move away from inhumane and impersonal healthcare exchanges toward individualized experiences between doctor and patient — two equally important pieces in the equation of ‘health.’

Listowel District Secondary School (April 2015)

"Listowel District Secondary School" written in blue on white/grey brick

Yesterday I had the opportunity to stop by Listowel District Secondary School and speak with the students about (dis)ability and labelling. I had an absolute blast with these awesome students, answering questions about life with a disability, inclusion and how not to propose to someone (it’s a long story). After school, I was invited to speak to the LDSS staff about my experience as a student with a disability, which lead to an interesting discussion about inclusion and empowering students with disabilities and their families.

A huge thank you goes out to Rachel Suffern and everyone on the CIC team for putting this presentation together and the teachers of LDSS for putting up with me. Thanks for everything and hope to see you all soon!

Microsoft #Empowering Campaign

Black background with centered white text stating "Empowering us all". Microsoft 'window' logo in the top right corner

Earlier this afternoon I was contacted by Microsoft on Twitter who are rolling out an “#empowering” campaign, tied in with the tonight’s Superb Owl competition (annual gathering of ornithologists?), aimed at showing the ways Microsoft is changing the world through technology. One such commercial focuses on a young boy named Braylon O’Neill who, with the help of advanced prosthetics, is going to take over enslave the world. Here are some of my initial reactions to the campaign. Continue reading “Microsoft #Empowering Campaign”

Are the disabled ‘afflicted’?

Facebook post featuring Sarah Palin and her son, Trig, with the text "A show topic yesterday in which Andrew innocuously referred to Sarah Palin's son, Trig, as "Down's Syndrome-afflicted" spurned several complaints alleging that calling Down's Syndrome an "affliction" is wrong. Do you agree, or is it splitting hairs?"

On January 6th, I was invited to speak on AM980’s Andrew Lawton Show about a recent Facebook post on the radio station’s fan page stating Trig, Sarah Palin’s son, was “Down Syndrome-afflicted.” Mr. Lawton and I had an engaging conversation around whether or not the term “afflicted” is offensive or if people are simply nitpicking for political correctness. For those who were not able to tune in to the broadcast, I’ve decided to write a short meandering blog post outlining why we need to stop referring to disabled people as being “afflicted.” Continue reading “Are the disabled ‘afflicted’?”

The 19th Annual Jeff Preston Celebrity Golf Tournament

John Davidson and Jeff Preston preparing for the $25,000 cheque presentation

I remember not knowing quite how to feel the first year Port Elgin Rotary approached my family and asked if they could hold a charity golf tournament to honour the work I had done for the Muscular Dystrophy Association of Canada. Obviously I was absolutely humbled by the kind offer but it was a lot for a 12-year old to process at the time. Mostly, though, I was just excited to have the opportunity to continue raising funds to fight Muscular Dystrophy, driven by the recent loss of a dear friend who had Duchenne, Muscular Dystrophy.

After the second year, I remember driving home from the Saugeen Golf course and my mom warning me not get my hopes up because this tournament, named after me, would likely not continue for much longer. My mom knew better than most that these types of charitable events were huge undertakings and energy–and funds–were quick to wane.

Leafs sweater signed by Baun, Bower and Jeffrey
Hot item in this year’s life auction: A Maple Leaf’s Winter Classic sweater signed by Bobby Baun, Johnny Bower and Larry Jeffrey

Years later and I’m proud to say my mom was totally wrong.

Last week marked the 19th anniversary of the “Jeff Preston Celebrity Golf Tournament,” organized by Port Elgin Rotary and held at Saugeen Golf Course. To date, we have now raised over $1.2 million to support MD research across Canada, most recently directing funds to Jesse’s Journey. Once again, we had a full slate of golfers (41 teams in total) taking to the course on a beautiful Friday afternoon. It is truly amazing how many golfers have returned every year with most having attended the tournament for more than a decade. Because of their dedication, and the hard work of local Rotarians, we were once again able to donate $25,000 to MD Research and step that much closer to finding a cure.

I just wanted to take a few moments to publicly thank everyone who worked so hard this year to make the tournament a success once again. First and foremost, a huge thank you to Kevin Carter for chairing the organizing committee this year and keeping everything on track. Similarly, I would also like to thank Rob Dunlop for his work recruiting celebrities. Of course, I’d like to thank all of the dedicated Rotarians who work behind the scenes before the event and volunteer on the day of the event–without you, this could not be possible. I would also like to thank all of the celebrities for taking the time out of their busy schedules to join us, especially those who have returned year in, year out. Thank you again to Bruce Power and Unifor, our two title sponsors who have been with us since the beginning, along with the Power Workers Union who show up in force every year. Lastly, I would like to thank the golfers for giving their time and money to this cause that is so dear to me, my family and others within the MD community.

Thank you to everyone and I can’t wait to see you all next year at our 20th anniversary celebration!

Speaking Out Retreat in Burlington, ON

Speaking Out Retreat in Burlington, ON

Today I delivered a motivational speech at the Speaking Out Retreat for Self Advocates in Burlington, ON geared towards adults with intellectual disabilities. This is the second Speaking Out retreat I have spoken at and it was a ton of fun. I met some awesome advocates and made some new friends. Thank you to everyone involved in organizing this event and a special thank you to Duane for inviting me.

Society for Disability Studies Conference 2013

SDS Conference 2013

 

SDS Conference 2013

This past week was the 26th Annual Society for Disability Studies Conference, a gathering of academics from around the world who are working within the field of disability studies to meet, connect and share their research. This year’s conference was of particular importance as it marked the 50th anniversary of Erving Goffman’s text Stigma: Notes on the Management of Spoiled Identities, perhaps one of the most important texts used in early disability studies. While I wouldn’t claim that Goffman was the founder of disability studies, I do believe that the field of disability studies, at least not in its current incarnation, could not exist without the work of Goffman providing such fertile ground of criticism and exploration all those years ago. I met some amazing people and sat in on some spectacular panels, with topics focusing largely on subjectivity, biopower, and the emergent fields of Mad and Autism Studies. I also had the chance to participate in a media-focused panel with three other lovely academics and delivered a short presentation on some of my doctoral research. On the whole, the conference was both illuminating and energizing and I can’t wait to see everyone again at next year’s conference.

See you in Minneapolis!

Presentation at the “Face-To-Face Luncheon” (Windsor, ON)

Presenting at Face-To-Face

Presenting at Face-To-Face

This afternoon I was invited to deliver the keynote at the “Face-to-Face” wrap-up luncheon by an old friend, David Robbins-Singh. David and I met several years ago at Easter Seals Camp when he participating in a youth leadership program I was helping to run.

Face-To-Face is an annual program designed to develop employment opportunities for disabled residents of Windsor, Ontario and is an innovative effort to break down the linguistic and interpretive barriers preventing the integration of the disabled into mainstream society. There is no better way to break down the stigma around disability than by getting people with disabilities into the workplace to show the amazing things they can do when given the chance. I met some amazing people today and am really encouraged to see how many businesses in Windsor had jumped on board. Hopefully the participants found the program fulfilling and will have success in the near future retaining fulltime employment.

Great day, all-in-all, and a very special thank you to David for inviting me!

Guest Lecture at Fanshawe College

"Guest Lecture" written above the Fanshawe College logo

On Thursday and Friday of last week I was invited by Danielle Cheyne to speak to 3 sections of her Human Services class on accessibility and life with a disability. We had some excellent conversation and, as always, I was impressed by the students comprehension of the issues and willingness to learn. In a city that can be, at times, wholly UWO-focused, I think we need to remember to take time and recognize the great work being done at Fanshawe College. Thanks to Danielle and the students for being wonderful hosts, I had a great time and look forward to my next chance to spend some time on campus.