Research, I learned yesterday, indicates that most patients want to be referred to as patients, as opposed to some other terms like customer, client and my favourite, victim.  Nice to be in the majority on that one as it is my preference.

At the same meeting I attended yesterday there was considerable discussion around the concept of patient-centered care.  The definition wasn’t defined as many, excluding me, were somewhat familiar with its evolution and the systemic thinking behind it.

This systemic thinking comes from what I feel is a truly noble, compassionate place but as our discussion rolled on it became obvious to me that it needed some refining from this patient’s perspective.

I’m a fairly regular visitor to the out-patient clinic to get my blood tested and it is this experience that crystallizes the gap missing in the thinking around this patient-centered care concept. 

I regularly have to wait 60 minutes to have my blood tested.  I should be in there for this test at least twice a month as I continue my half-hearted commitment to bringing my feritin (iron) levels down with (ir)regular phlebotomies – a donation of blood that goes to the garbage.  That’s 24 hours a year just to get blood tested regularly.

Everyone’s time is precious but I have to tell you mine is more valuable than ever at this “young family” stage of my life.  Free time is a joke really, my wife and I debate (heatedly at times) over who gets the opportunity to do chores… I will admit that prior to kids I never thought I’d have to lobby strongly for a half hour to clean the garage or mow the lawn.

Growing up I had the privilege of seeing the A&W business from the inside, as my step-mom was a franchisee.  A&W want you to get your hamburger and fries in 90 seconds or less at lunch and they track their success vigorously in every restaurant.  In addition there are national practices in place to ensure the product is satisfactory and if not the situation is remedied.  I also know enough about A&W to know that they spend a ton of money on climate, their people, something that is integral to achieving any sustainable success in business.  This type of thinking is “patient-centered care” at it’s finest but it seems until yesterday it hadn’t surfaced in a meaningful way within the cancer system.

Sure providing me with the best therapy available, ensuring all of me is treated including my mind and spirit, these elements are essential and require progress but the ultimate milestone for me will be feeling like I’m a valued customer when I’m actually a patient.

This blog is full of stories about the system hitting me with obstacles instead of opportunities to address my situation.  Registration for appointments was a favourite target of mine for many years.  For the record after 3-4 years of refusing to register for any hospital appointment I do now reluctantly register.

There are two parts to this shift as I see it, and the first is the monumental one… it’s the required cultural shift within the health system to treat patients like customers. The second is relatively easy if you nail the first… delivering on that enhanced patient experience.

I’m not sure I’ll see the day when the health system has a target wait time for me when I get a blood test and measures its success meeting it, but I hope my kids will.

Always…
Live life.  Love life.
Geoff

Everyone was wondering, but yet afraid at some level to ask or say anything about “the light”.  Excited, amazed and generally feeling blessed to see me with my eyes open and doing something as simple as breathing on my own.  The relief must have been in some ways overwhelming.  For a small group of people connected to me this was the hopeful, miracle end of a ride that appeared to have tragedy written all over it.

10 years ago today I was starting a new challenge, another one.  After a month in ICU on life-support where I faced life-threatening infections, had my lungs bleed out and was given less than a 2% chance of surviving I was now home.

I still struggle with placing this experience among the many I’ve had in my now 33 years.  I believe it was a rebirth for me.  It is for me, 10 years later, still impossible to describe the experience of having such intense energy, love, compassion, directed my way for an extended period of time but to be unaware of it, consciously.  It is in many respects like being a new born, but my situation wasn’t about celebration.  Not until I opened my eyes and started the trek back to independence.

A memory of being in the ER and begging a doc for some pain-killers and the memory of my buddies wheeling me up the stairs to my Mom’s house are the book-ends of that ride.  There are a very few precious other memories or dreams, real or created, that I have from that time.  I don’t get the opportunity to actually talk about it very often, or hear others talk about it, but when it does happen the words are some of the hardest for me to speak yet some of the easiest to hear.  To say I am curious about that time is a massive understatement.

In the run of life-time milestones defying death while turning the 1% into reality ranks pretty high on the achievement scale.  Yet unlike my university graduation, my wedding, and many other significant triumphs this one comes with a memory vacuum.

Imagine not remembering your grad, your wedding, or other major life events?  Don’t know if you can but its kind of where I am.

Despite no actual memory for a month I’ve fabricated some great re-enactments of that time, in my mind, even recalled a few dreams from the time under.  Not sure if they help or feed my curiousity to know more about that time of my life but I can say this…  I know enough about that experience to answer the question that was on everyone’s mind.

No I didn’t see the light… but I do now.

Always…
Live life.  Love life.

Geoff