slow medicine

turtleMeghan O’Rourke wrote a brilliant article for The Atlantic (is there any other kind in that magazine?) called Doctors Tell All – and It’s Bad.

You know when you read something and you think: gosh, I wish I was talented enough to write that?  This is a manifesto for a return to compassion in the health system.

Meghan recounts her own experiences, ill and undiagnosed for ten years, and shares her perspective in her journey with her mom, who had metastatic cancer.

{And YES, the n=1 (or 2, in this case) counts. Stories matter. One person’s story matters}.

She describes the hospital experience as including physicians who were brusque and hostile, harsh lighting, noisy rooms and terrible food. Two years ago, when I was hospitalized overnight after complications from day surgery, all I wanted to do was to go home. The night-time was the worst. The woman beside me was moaning in pain, and the nurse who worked nights didn’t seem to believe that I needed pain medication. Call bells went unanswered, and I literally dragged myself along the floor in order to go to the bathroom. It was really bleak.  I begged to be discharged the next morning – I figured that the misery was the system’s way to keep the length of stay down.  The hospital (despite being shiny and brand new) was hardly a healing place.

Canadians can stop being all smug about our health care system. Yes, our inpatient costs are covered by our public system, but we spent a lot of money without a lot of return. We pay out of pocket for dental, optometry, pharmacy and rehab medicine services. Pile on top of that stories of long wait times, nightmares navigating the system (nightmares even finding our clinic room in vast hospital settings with no wayfinding), long waits for pathology (the 12 days I spent thinking I might have ovarian cancer were the longest in my life) PLUS crappy tales about health professionals who treat us with distain…well, my goodness, things are a bit of a mess, aren’t they?

O’Rourke’s piece confirms that physicians think so too. And while we might not have the managed care or HMOs like the US, there are many similarities. Appointments, particularly with specialists, are rushed. High powered, well-dressed efficiency consultants have marched in to pressure health professionals to shave seconds off of patient interactions to save time (and money).  Where’s the reward for kindness? There isn’t any.

Patients don’t have time and aren’t taught the advocacy skills to make sure all our questions are answered properly.  (Morgan Gleason, age 15, profoundly said:  “doctors go to medical school, but patients don’t go to patient school” – this is brilliant).  I feel for the overworked physicians, who are mostly on a fee-for-service structure for added pressure – for the more patients they see, especially the complex ones, the more they get paid.

And I’ve watched the friendly conversation between health professionals and patients fall by the wayside. That’s the first thing to go in the chase for more volume. I mean, how happy can physicians be in these situations? Surely this stress has to be transferred onto their patients (and the physicians’ own mental health, if you look at the suicide rates for doctors).  You can say the same for all health providers, not just physicians.

I preach that in the pursuit of efficiencies and time saving measures, we have cut out the compassion. Nobody gets paid to sit and hold that elderly lady’s hand in the ED until her family comes.

The solution?

Danielle Ofri quotes Frances Peabody, who tells the graduating medical class of 1925:

 “The secret of the care of the patient is in caring for the patient”

But why are the simple things so hard?

O’Rourke pines for a doctor who understands that conversation is as important as a prescription, a doctor who knows that healing is as important as the surgery.   Me too.

That brings us to Slow Medicine. I love the slow stuff. I saw Carl Honore last January speak at an autism conference, and that was the most important presentation I’ve been to in years. I write about slow here, here and here.

But Slow Medicine! O’Rourke introduces me to that term. I love it. Guess what that brings us: happier doctors and happier patients. Slow Medicine reminds physicians that it is a privilege to serve patients. As I like to say, health care is a noble profession. That needs to start being honoured and recognized by administrators and executives. Patients are not cars in a car factory.  Stop treating them like such.

My biggest take away in my presentations is also the simplest. It is a little acronym, KIDS, borrowed from Children’s Hospital of Philadelphia, that says:

Knock
Introduce yourself
Describe your role and what you are there to do
(And for goodness sakes, please, please, please…) Slow down

Slow medicine.  Slow health care. YES!  An idea whose time has come.

 

 

 

 

move towards the light

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I oscillate wildly between feeling despondent and that there’s no hope for change in this world, and then feeling deeply thankful for what I have. I cannot figure out how to even out these emotions, except by recognizing them and accepting that they are true. As Anne Lamott’s son Sam said when he was young: “I think I understand about life:  pretty good, some problems.”

As I listened to Dr. Louis Francescutti’s presentation to health executives last week, I felt despondent about the state of our health system (and politics in my home province of Alberta in general). We’ve had the same government for 40 years, and having too much money has led to boatloads of entitlement, reams of wasted money and a lack of creativity or innovation. Why be creative when you can throw a bucketful of money at your problem and then walk away? That’s the Alberta way. Ugh.

I felt gross after that talk, mostly because what Dr. Lou said about the massive inefficiencies in the health system and an eroding sense of compassion from health professionals was true.

Then I stumbled upon an old article written about Darryl Sutter and his family. Darryl Sutter is, of course, the coach of the Stanley Cup winning LA Kings hockey team. He and his wife also happen to have a son with Down syndrome, Christopher, who is a young adult at age 21. Christopher is the exact same age as my oldest son (who also lives in LA) and ten years older than our youngest son, Aaron, who has Down syndrome too.

Often it is the families who are further along their journey that have the greatest insight, just by how they live their lives. Sutter talks about even during his nomadic time as a hockey coach, but how his family always came first. Sutter resigned from the Chicago Blackhawks so that Chris could live on the family farm, and then they moved to San Jose for his schooling, where services were robust for kids with Down syndrome. Back to the farm when he was older, and he had the freedom to ride his horse and tool around on the tractor. Now Chris is graduated from high school, and is in LA with his dad and family, where’s he’s involved with Special Olympics and the LA Kings hockey team.

I love this quote:

Darryl Sutter’s biggest triumph, though, has nothing to do with hockey. It’s the fact that, against massive odds, he and his wife have been able to raise a healthy, happy son.

Usually the term ‘healthy’ makes me shudder (I know so many families whose awesome kids wouldn’t be considered ‘healthy’), but in this case, I know what it means. Chris had heart surgery when he was a baby, and many medical interventions since. He’s as healthy as he can be – and that’s what health is really about, as the WHO says: “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” It is about well-being, not merely about not being sick.

I take heart in Christopher Sutter’s story. The Sutters talk about having a long-range plan for their son, based on what he wants to do. Aaron so desperately wants real friends and a girlfriend. We need to be in a community where he is accepted as a young man first, and divest ourselves of people who see him merely as a disability. He needs recreational opportunities, and decent year-round weather so he remains active. He needs access to the beach, which he dearly loves. He needs to have meaningful employment and be able to safely and independently travel back and forth to work, where he is recognized and known. This utopia doesn’t naturally exist. It is something we have to work hard to build for him.

The only thing that distracts me from the despondent is the grateful. The wisdom I learn from parents who have children who are older than mine is that we don’t have take on all the weight of changing the world. I have put in my time, and now I can move on. In fact, our greatest revenge in a society that is discriminatory and unjust is simply to live a good and happy life. And that’s what we are committed to do. Thank you, Sutter family, for your inspiration. It is now time for me to put down my battle axe and to move towards the light.

10 Ways Patient Engagement in Canada Smacks of Tokenism

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Thinking of engaging patients in your health organization? Here are ten proven ways to engage patients in a tokenistic (and not meaningful) way.

1.  Invite patients to your focus group. I despise the term focus group.  These words imply that patients will be engaged once and only once, probably late in the process, and their suggestions will likely be discarded. Highly paid consultants with expensive shoes often facilitate these sessions. I also call this the tick box phenomenon.

SOLUTION: Invite patient representatives to regularly occurring meetings, not just one-shot focus groups. Strive to communicate updates with them regularly, and sincerely ask for feedback that you seriously consider and incorporate. (Engagement is not just one-way communication – it needs constant dialogue and collaboration).

2. Assume that staff who work for consumer organizations are patients. I call this the professionalism of patients, and I witnessed this in Australia when I was there three years ago. I sat on a patient panel of 5 people, where I was the lone patient. Everybody else was a paid staff member of a consumer organization.

SOLUTION: Consider the purity of the grassroots patient voice. Staff representing patients always have a bias towards their organization’s agenda.  Think about how you define ‘patients.’

3.  Have your corporate executives, clinicians and researchers speak on behalf of patients, or be the lone voice talking about patient engagement or patient centred care.

SOLUTION: Don’t do this. Ever. If you are doing this, stop it immediately. It is exceedingly insulting to all patients to speak for them and not make space for them to speak for themselves. This totally smacks of tokenism.  At the very least, consider partnering with a real patient in your patient experience presentation.

4.  Ask patients to over-volunteer. Have only a handful of patients that you continuously call upon, and expect them to show up at your organization for meetings numerous times a week.

SOLUTION: Your network of patient volunteers should be high in numbers so you have great capacity. Create sustainability in your volunteer pool by equitably sharing opportunities so patient reps don’t experience burnout or bitterness.  Consider going to the patients on their own turf – in their own homes and communities, and do not always expect them to come to you.

5.  Hire a paid patient representative to speak on behalf of all patients, in all forums. The n = 1 model of representation is not diverse. Having one person present to health audiences, be the patient voice on committees, speak on behalf of all patients, is just plain wrong.

SOLUTION: Having a paid patient staff member is awesome. But it should be that person’s role to engage more patients and build relationships, not to be the lone patient voice in the organization. This builds sustainability and allows for diverse perspectives.

6.  Host a Patient Engagement Conference without any patients. (YES THIS HAS HAPPENED). Or, fly in a celebrity patient speaker from another country to deliver the opening presentation and pat yourself on the back for being so darn patient centred.

SOLUTION: See #3. Nurture your local talent pool of patient speakers. Yes, this might take some work. But coaching and supporting patient speakers who have experience close to home will create a more relevant and engaging experience for your audience.

7.  Invite patient speakers to your conference or educational event. But don’t offer to pay for their time, expenses or registration. Pay all other speakers a fee and reimburse them for their time and expenses.

SOLUTION: Show patients that you value their time and wisdom as much as health professionals by not expecting them to be out of pocket for anything, and consider offering a reasonable fee to cover their time.

8.  Ask patients to sit on your Advisory Council, but when they have constructive feedback you don’t like, ignore that feedback, don’t address what they have to say, and silently pave the way for their bitter resignation.

SOLUTION: Patient reps aren’t cheerleaders. Expect to hear feedback that you don’t like, and respect that feedback by listening to it, responding to it, and collaboratively making a plan for how things will improve in the future.

9.  Invite patients to participate in your organization but expect them to show up on short notice, with no prep beforehand and no debrief afterwards. Give them an obscure room number and expect them to find their own way. Don’t pay for their parking. Don’t introduce them when they arrive in the room.

SOLUTION: Patients have families and lives. Give them lots of notice for meetings, and options to choose from so they can arrange childcare and take time off work. Patients are sometimes not well themselves. Plan for that by having a back up strategy (perhaps 2 patient reps, not just one). Extend courtesies to them. Pay for their parking. Meet them in the lobby and take them to the meeting room. Facilitate round table introductions when they get there. Take them for coffee afterwards to debrief.

10.  Patients are paraded in the ‘tell their story’ without any direction or coaching.

SOLUTION: Recognize that patients are sharing personal and intimate stories about their health with strangers. Honour the patient story by providing a listening ear, information about the audience, direction about key messages and tips about public speaking. Support patients for success, not for failure.

FOR BONUS POINTS:

11.  Wait until your organization has all their ducks in a row before you engage patients.

SOLUTION:  You will never ever have all your ducks in a row.  (Patients know this reality better than anybody).  The time to meaningfully engage patients in your organization is now.

that cute thing

me, not really that cute.

me, not really that cute.

I have lost track of the number of times somebody has said to me about Aaron:  “oh, they are so happy all the time.”

I usually respond, “oh you should see when I’m trying to get him ready for school in the morning!” in a cheery, fake voice.

What I really should say is, “well, Aaron has the same range of emotions as you and I do.  He’s not happy all the time (and neither am I).  ps:  he isn’t a they.'”

Parenthood is hard work with any child.  Pile on top of that struggles with health and education systems and societal exclusion, some days I am just miserable and pissed off.  This is neither good nor bad.  It just is.  I also get mad at society for their judgement of my eldest son, who is a tattoo-filled drummer in a punk rock band.  There are many injustices in the world.  You don’t have to look hard to find them.

I like this blunt essay from David M. Perry about the dangers of generalizing about Down syndrome, called Down syndrome isn’t just cute.   Now that Aaron is 11, relying on ‘the cute’ doesn’t work anymore.  11 year old boys aren’t cute.  They are often-cranky pre-teens, intent on pushing away their parents as they strive for independence.  This is true for all 11 year old boys, Down syndrome or not. 

The one time I got heckled during a presentation was by a grizzled geneticist.  I was presenting, along with another mom, about the value of peer support when parents get a prenatal diagnosis of Down syndrome.  As our presentation went on with (admittedly cute) photos of our 3 and 6 year old kids, I could see him becoming more agitated in the back row.

Finally he burst out:  “What happens when they aren’t cute anymore?” and then went on a rather shocking rant about his skewed perception of the realities of having a child with a disability.  I thought to myself:  “Gosh, I bet this guy isn’t giving families a value-neutral diagnosis.”  (Value neutral means the information all isn’t good, and it all isn’t bad.  Such is life).  In retrospect, I should have shot back at him:  “Well, what happened when YOU weren’t cute anymore?”

David Perry reminded me of this altercation, and I have to admit, however, that this awful geneticist had a point.  All kids grow up and aren’t cute anymore.  If we are resting on our laurels of marketing the (admittedly) cute younger kids with Down syndrome, we aren’t doing the folks who aren’t considered cute any favours.

I stopped being cute at about age 7, when I had my ringlets cut off,  sported stop-sign shaped glasses and wore unfortunate scratchy red turtlenecks.  I also wasn’t happy all the time, particularly in my teenage years (just ask my mom).

Does this mean I was any less a person?   As Perry says, ‘what matters is our shared humanity’ – not assigning value to somebody based on how cute they are.   We are all just human beings after all, warts and all.

 

universities & storytelling

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Today I spoke at a new kind of conference for me: an academic one – the Engagement Scholarship Consortium Conference. (You can tell this is an academic one by the amount of syllables in the conference name).

I was invited to reflect on a panel why I speak as a patient to health faculty students every year. This was a huge conference at our convention centre, about a topic I didn’t even know existed: how universities engage their communities. The presenters were from all over the world, and I attended a session about storytelling (one of my favourite topics).

Ileans Haunami Ruelas and Saneo Marfil from the University of Hawai’i presented about how their university creates storytelling spaces to share cultural information about Hawai’i with families in their community. I was impressed by their family-centred approach – they offer sessions in the evenings and weekends, provide child care so parents can attend and offer meals, snacks and transportation for participants. This proved to me once again that the little things mean a lot in engagement.

Next up, Judith Bachay from St. Thomas University in Florida spoke about their university’s attempt to connect counselling students with teenagers and young adults who have addiction challenges. The students learned true empathy skills, and the recent graduate speaker said that she started to see teens as teens first, not just as drug users. I love that people-first philosophy, and I believe all us human beings want to be seen as people first (not labels).

The speakers at this conference did not just validate what I already knew. J. Michael Lyons from Saint Joseph’s University in Philadelphia gave a rousing presentation about using digital media to tell the stories of people incarcerated in the US prison system. He showed a poignant video created by his students that told the story of a man who was incarcerated when he was 16 – the United States, shockingly, has “juvenile lifers” – children who are sent to jail for life for being convicted of murder or accessory to murder.

His Communications Studies students go into a federal penitentiary to talk to the ‘lifers.’ They are only allowed to bring in a pen and paper, so they collect the stories and then create a video, with powerful images and a narrator, that tell the mens’ stories in first person. I was struck by how the speaker so respectfully referred to the men who were incarcerated by name. He also said, “part of incarceration is to keep your story quiet,” and emphasized, “what a waste of humanity to keep people locked up so long.”  He and his students work hard at getting these important stories out into the world.

The words from the gentleman who was incarcerated 30 years ago say it best:

“Do not be a follower. Dare to be different,” and,
“I want to be remembered as someone who made a bad choice. I am a good person who made a bad choice.”

This is powerful stuff.

While I typically speak at health professional conferences, it was enlightening to attend this consortium to think about new perspectives. It pleases me that universities are considering the importance of storytelling in their communities. As I said on the panel today, I still believe that sharing our stories is how we are going to change the world.

pharmacists, heal people with love

This video from the Society of Hospital Pharmacists of Hong Kong comes by way of University of Alberta Pharmacy professor Lisa Guirguis.

My favourite line?

Cure illnesses with medicine.  Heal people with love.

Let’s consider the labels we have for different health professionals.  Think that pharmacists are introverted scientists, who merely count pills behind a counter?

Well, you are WRONG my friend.

Over the past year, I have been surprised by pharmacists.  Last summer, I interviewed six champion pharmacists to prepare for my Great Translators presentation at the Alberta Pharmacists’ Association.  I was inspired with their passion and dedication to caring for patients.  I then co-presented with RxA’s Director of Professional Practice Jeff Whissell to the Faculty of Pharmacy students last March.  This past weekend, Jeff and I co-presented again about patient centred care at the Canadian Society of Hospital Pharmacists‘ Educational Event.

Here’s what’s impressive about pharmacists.  Their scope of practice has recently changed to include more consultations with patients.  So they are very interested in patient centred care, and go as far as inviting real patients to speak to them at their conferences.  (The emphasis is intended; other health professionals invite researchers and administrators and themselves to talk about patient centred care and share patient stories – they aren’t quite evolved enough to invite real patients themselves.  This sort of infuriates me).  Pharmacists are further along this continuum of patient centred care.

The immersion in the world of pharmacists has taught me a lot.  I previously had no idea what pharmacists actually did.  Many years ago, I took a pharmacology course in university and barely passed.  I knew that pharmacists are very bright, academically inclined and have the ability to memorize a vast amount of complex information.  But that’s about it.

I’ve since learned that pharmacists are actually the great translators for patients in the health system.  They take something that is very foreign to patients (which comes in the form of a prescription or an order) and they help translate that into something that helps patients get better, they support patients to manage their own health.

Pharmacists have a vast amount of health knowledge, and are great resources for us.  In the community, pharmacists are incredibly accessible to patients.  In fact, you can see a community pharmacist by just walking into your local pharmacy.  You can visit them at 10 pm on a Sunday night, and you don’t need an appointment.  How I wish we could access all health professionals this way.

Pharmacists who work in hospitals often round with other health professionals to manage a patient’s medications.  But alas, we often don’t even know there’s a pharmacist in the crowd of white coats that present to us at the bedside.  They are virtually invisible – we don’t know who they are, or what they can do for us.  For instance, in critical care settings, pharmacists perform “pharmacokinetic monitoring, monitor vital signs and laboratory results, adjust medication dosages, enter orders, perform clinical checks and dispense medications.” (Canadian Journal of Hospital Pharmacists, July August 2014).  I mean, WHO KNEW THIS?  Not me.

This is about to change.  The profession is dedicated to increasing patient understanding and visibility.  Research about patient centred care and pharmacists is pointing to some simple tips to help patients recall and appreciate pharmacists.

To increase understanding of the pharmacist role, pharmacists can engage in some simple patient centred care approaches by:
-introducing themselves
-describing their role
-taking the time to find out what’s most important to the patient
-giving examples of the types of questions that patients might ask them
-sharing contact information with patients so they can get in touch with them.

Health care is not just about doctors and nurses.  There are at least 28 other health professionals that are dedicated to caring for us…and pharmacists are, in fact, leaders in advancing patient centred care.  Go ahead, and ask your pharmacist what they can do for you.