I was allowed 5 slides and 5 minutes! Talk and slides are below. Images were used under Flickr Creative Commons license. Each slide links to its original image.
“I was what I call an ‘extreme’ caregiver for over 12 years, caring for my son who had multiple severe disabilities. Owen died about 4 years ago – since then, I’ve been writing and speaking about our experiences.
I’m going to take you through 5 of my favourite topics related to barriers to effective decision-making for families – I might actually reframe this as “barriers to true autonomy”.
This is a very high level presentation but perhaps it will leave you with some big-picture questions to consider as you make your way through healthcare projects, whether they are based in institutions or in the community.
Lack of transparency
Health care service delivery is not only opaque and confusing, but I believe it’s deliberately so – despite immense efforts by institutions to convince us otherwise. Health care functions best when it’s at its most efficient. And efficient systems have no time for true transparency nor is there room for patients to doubt authority.
For example, we don’t get to hear doctors debate treatment options amongst themselves – instead they confer privately to deliver a united message. We don’t know how policy decisions are made, we don’t know how beds are allocated or how doctors are reimbursed or how industry is influencing clinical practice. We also don’t know what’s at play behind the scenes – personal, social, institutional, political or legal influences that directly affect our doctors’ recommendations.
Sure, we are asked for our ‘informed consent’, but the information we receive is based on someone else’s idea of what’s important.
In all my years as an author, blogger, speaker and writer, meeting hundreds of families, I have never heard a patient or caregiver express concern about confidentiality or privacy. Yet it’s one of the biggest concerns in health care program delivery.
We know that patients often seek each other out, self-identify online, plead for help and support from others, even call on others to out themselves and form a community. I get that there are legal constraints – but an over-emphasis on privacy and confidentiality effectively end up separating and isolating patients.
Health care could do a much better job of connecting people who want to be connected, while still protecting the information that needs protecting.
You just heard me complaining about lack of transparency – health care’s remedy or response to this is to provide as much information and data as possible. Patients will research endlessly, then doctors will also provide research or scientific data to reinforce recommendations. Certainly this information is better than no information… but there are issues here: how does a lay person curate this information, validate its authority, understand whose agendas are being served – how sophisticated are patients when it comes to statistics and numeracy skills…?
Add to this that many people believe that EBM or evidence-based medicine is based on findings that are neutral and value-free. Clinical trials might be the best we have, but their objectivity is far from guaranteed.
Perhaps the real issue is not so much an overload of information but an ‘underload’ of interpretation, meaning and relevance.
When we say accessibility we often think of removing physical and technical barriers, or providing accommodation for people with disabilities to achieve equity. But those aren’t the only access issues – there are often cultural and socio-economic divides that limit equitable access to health care for large numbers of people.
Some scenarios to consider: a patient requires cancer treatment but can’t afford the time off work. A child requires intensive therapy but there are three other kids at home who need attention and the family just can’t do it all. A young adult in a wheelchair can’t get to work because the public transit system options are completely unreliable…
My point is that accessible structures aren’t helpful to people who can’t even get there.
Accessibility shouldn’t start at the property line – it should begin with wherever the patient lives…
Finally, fake autonomy. This is really a summary point where all the other points lead. I like this expression because it pokes holes in the holy grail of patient-centered care…
I think health care does a great job of selling us on the notion of autonomy and choice and freedom in decision-making – we can all buy into the messaging. But with all these hidden barriers that remain, there can be no real autonomy, it can only be a veneer.
Now I realize that this is a depressing message, especially when we’re talking about an area – health care – that works hard to foster hope and positivity and potential for change… but all is not lost!
I’m not sure the answers lie within healthcare itself. I think rather, we need a strong movement to educate patients and families, help them find each other, to tell their stories and compare notes – and to claim for themselves the autonomy that health care promises.”