Terry Pratchett: Shaking Hands With Death

Sir Terry Pratchett, the best sellling British fantasy writer who was only eclipsed by Harry Potter, died March 12 at his home at age 66. Pratchett suffered from a rare form of Alzheimer’s disease and was an outspoken advocate for assisted death.

The question I’m left with upon hearing this news is: Was his death UN-assisted?

Sir Terry, diagnosed at age 59, shared his journey with Alzheimer’s widely and publicly while at the same time sparking public debate on the issued of assisted death. From documentaries to lectures he travelled widely to examine the topic. Famously, he was quoted: “I have vowed that rather than let Alzheimer’s take me, I would take it,” he said. “I would live my life as ever to the full and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the Brompton Cocktail some helpful medic could supply. And with Thomas Tallis on my iPod, I would shake hands with death.” I trust he got the death he so yearned for.

This video is the famous Richard Dimbleby lecture at the Royal College of Physicians that he gave [...] continue the story

An Open Letter to Minister Lisa Raitt

Dear Minister Raitt,

Please accept my applause and congratulations for the courageous and open conversation you had on Canada AM about the details of your health issues.

Its estimated that as many as 20% of women suffer from fibroids. Your experience reflects that of many women – that “sometimes options are not presented” and “I didn’t know any of this until it was too late”. And as a consequence so many women suffer in silence and unnecessarily endure extreme treatments.

In case you don’t know, sharing your story is a breakthrough in leadership echelons for this important conversation. You are correct – there’s a lot of stigma attached to speaking about women’s conditions publicly. Usually its in whispers, in corners, or simply with tears of isolation. Women across the country have been addressing these gaps in treatment, diagnosis, and the social and economic impact by self organizing and sharing their stories.

Your leadership role model will empower women to be assertive voices and participants in their healthcare so that they can act, and get appropriate treatment, before its too late. We have been documenting the rise of women’s voices on the issue of fibroids specifically, and bleeding disorders in general and you can follow [...] continue the story

It’s Time to Put the Patient in Queen’s Park

By: Zal Press and Dawn Richards

September 28, 2014

As dedicated patient experts we welcome Ontario Premier Wynne’s Mandate Letter to Health Minister Eric Hoskins. We are encouraged that in an interview with the Globe and Mail (Kelly Grant, July 11, 2014) Minister Hoskins committed himself to “improving the patient experience” and the Mandate letter leads with a priority to “Putting Patients at the Centre”.

In our many patient roles, we’ve heard the platitudes of “patient-centred care” and “patient experience” bandied about like badminton birdies that can fall to the ground with nary a concern and then replayed with the same casual whimsy.

Will this time be different? We’d like to give Minister Hoskins the benefit of the doubt and support his intent with a vision that embraces the opportunity that a focus on patient experience provides.

We start by providing a common understanding of the “patient experience.” The Beryl Institute, a global community of practice and premier thought leaders on improving the patient experience in healthcare, defines patient experience as: “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.“ This definition tells us that patient experience is more than just satisfied patients. Satisfaction is the result [...] continue the story

Canadian Women Changing Healthcare

I happened to catch an episode of the CNN series “The Sixties” which featured the rise of the feminist movement. It caught my immediate attention as we here at Patient Commando were hard at work preparing our 2nd Annual Canadian Women Changing Healthcare. It had escaped my memory that in my lifetime there was a time when there were quotas on the spaces available to women  in medical, dental and law schools. There was a time when airline stewardesses had to be single, with soft hands and were forced to retire at the age of 32. There was a time in my lifetime that women marched in the streets fighting for equality and recognition. The episode reminded me of  many women who led the way – like journalist Gloria Steinem who infiltrated Hugh Hefner’s Playboy empire, Cosmopolitan editor Helen Gurley Brown (Sex and The Single Girl), author Betty Friedan (The Feminine  Mystique) and the National Organization of Women (NOW) who played such important roles in galvanizing what turned into a global movement.

I couldn’t help but think of the many parallels between that time and certain realities that exist in our healthcare system. As Patient Commando and others have pointed out before, 78% [...] continue the story

Over 200 Artists tackle the Illness Experience

“Mira, Mira on the wall” was the refrain that came to mind when young Mira Berlin (MFA) presented her idea 3 years ago for an art show representing the personal illness experiences of artists. After she left my office, I thought about whether the refrain’s connection to the fairy tale was applicable to the concept.

Three years later, the fairy tale reference can be discarded. A collective of European academic, art and industry leaders has produced a vivid expression of illness through the eyes of artists working in collaboration with patients.

‘Perspectives – Art, Inflammation and Me’ is an initiative designed to add a different dimension to the current understanding of immune-mediated inflammatory diseases (IMIDs) and their impact on patients and society.  The exhibition debuted at the 9th Congress of the European Crohn’s and Colitis Organisation (ECCO) in Copenhagen, Denmark on February 20 with more than 100 unique pieces of art.

Mira was interested in the subjective experience of disease to showcase the potential of Fine Arts “to transcend the bounds placed on patients upon their diagnosis” and to highlight “the incredible power of images to demystify illness and reconcile us to disease, and even to death.” At the time, her thoughts were [...] continue the story

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