The Upside of Down

A short while back, I introduced you to Catherine Crock, who heads up the Australian Institute for Patient and Family Centred Care. While I was in Melbourne, she handed me a book and said, "You are going to like this."

"This" was The Upside of Down, a memoir by Susan Biggar (Kindle edition here.)

On one level, and an effective one at that, this is the story of parents raising two children with cystic fibrosis, and all that entails (including a choice to have the second baby even after genetic testing guaranteed that he would have the disease.)  Susan summarizes:

This is a story of belief, a story about learning that sometimes joy is a decision. The Upside of Down is a memoir about illness, yes, but it’s also about the reward and frustration of parenting, the hard work of resurrecting a marriage and the upheaval of cross-cultural life. This book celebrates today because we can’t always count on tomorrow.

So read the book for that reason alone.  But there is another reason related to topics often discussed on this blog. Susan and her husband Daryl and the children had a chance to experience the differences in medical care in the US, New Zealand, France, and Australia. The shock of Paris, for example, is seen in this excerpt about Oliver's hospital stay:

The efficiency and hygiene at the hospital are astonishing. Nurses are highly skilled and meticulous, though not at all chummy.  The physios barely acknowledge me yet perform very effective physiotherapy. Our doctor, the Professor, arrives only once in the week with a fifteen-strong flock of subordinates. He briefs them on the case, nods at me and is gone. Other white coats pass through fleetingly, again with little conversation.

The lack of discussion and involvement in decisions leaves both Daryl and me questioning the care. We may have relatively little medical knowledge but more "Oliver knowledge" than anyone else. Is that not relevant? Isn't there a role for us to play in helping him improve? I am physically present with Oliver, but otherwise feel invisible. The role allocated to parents is minuscule with "someone else" deciding everything about his treatments, meals, baths and even visitors. I am routinely put out of the room for dressing changes and procedures, despite Oliver's wild protests. For the first time since we started on this journey with illness I begin to feel like a victim, a powerless player caught up in a life that is moving in ways I can't control.

A sojourn in California offers a difference:

It's culture shock all over again at the hospital. The nurses are amazingly effervescent and friendly: I have five new best friends by lunch. They wear clip-on teddy bears on their stethoscopes and Bear in the big blue house pins on their shirt collars.  When my tears seep out they offer full-on hugs and tissues, even the occasional shoulder rub.

[When she calls in during a break from the hospital, Daryl notes:] "The menus are amazing and all the extra food we can order for him. Plus everyone is so much more helpful and friendly than in France. It makes a big difference to the whole experience."

But even warm and laid-back can have its downsides. The daily routine is unpredictable and harder to work around. Medications and treatments are sometimes late and Oliver is less settled with the slightly topsy-turvy routine. Hygiene etiquette, though probably perfectly satisfactory, feels dodgy after the French hysteria about sanitisation. Oliver is not allowed out of the building at all, even for a quick walk in the stroller.

Finally, the family settles in Melbourne, and the hospital care is excellent and humane, but Susan notes a common trait--from New Zealand to France to the US to Australia:

Looking back, I'm convinced that all the staff we have known were trying to provide safe, efficient care while trying to meet all of the other hospital criteria. It has never been an intentional excluding of us. But because there's not a tradition of including patients and families in policy decisions or putting them on committees, hospitals are often flying blind about how to blend quality and safety with patient and family satisfaction.

And finally, the realization that empowerment begins with self-empowerment:

Cath and I find ourselves talking regularly about how to broaden our scope [beyond serving on the hospital's Family Advisory Council] and link together the many like-minded people across the country already working to improve healthcare. The group begins with small research and clinical projects, encouraging a culture of engagement and partnership between staff, patients and families--with the aim of creating a safer, more patient and family-friendly system. After a year of meeting together, with passion and numbers increasing, an organisation--the Australian Institute for Patient and family Centred Care--is born and a movement towards improved partnership in health is launched.

So, The Upside of Down is not, after all, just about one family.  It is about a pattern seen worldwide, the disenfranchisement of patients and families in the delivery of health care. In the end, though, it is about the ability of normal people to overcome the inertia in the system and work to create a partnership with the well-intentioned people who have made health care their lifelong passion.

Yes, Cath, I liked the book.