The death of a fighter

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Two deep gasping breaths, then stopped as I entered the room. The woman sitting by his bedside turned to me and with anguish said,  “There, he just stopped. He just took his last breath.”  The grandfather wall clock rang out 1030 all in sequence and I felt his soul rush by my left ear as I looked at the bright sun outside.
He was still warm, but caved in, face hollowed by this final, slow illness that he had fought until the last. So full of life, he refused to speak of death. Instead, he kicked and punched, hearing stories of others living until one hundred on ensure, which motivated him to drink it, although the taste wasn’t to his liking. He told his niece to buy him milkshakes after I had told him how fattening they were, and loved A&W root beer shakes- I didn’t even know they made them.
I gently listened to his chest, finding the stethoscope difficult to manoeuvre over a bony manubrium, too many deep valleys between ribs that had long since lost any padding. No breath or heart sounds.
I saw his jaw move with gravity, relaxing into the left side of the bed, as though moving in his sleep and thought for one horrified moment that we had rushed him, then remembered that happens.
His eyes not yet glazed, not enough time passed, looked off into the distance, an unblinking stare with no pupillary reaction to the beautiful sunlight streaming over his soft white sheets.
I remember trying not to laugh at the wrong time as he told me a funny story- I didn’t know him long but he was a real comedian- when he put Vaseline on his teeth when he had them refit, because they felt too tight. I remember how happy he always was to see me walk in, ready to laugh at his next joke. Even though he was always so frail, he had a larger than life personality, with stories that would make a lumberjack marvel.
He lay there, peacefully. He went without any fuss, or any distress. Truly what we would consider a good death, although no death is ever good to those left behind. I carefully closed unblinking eyelids over deep black pools.
I will carry his memory now, and he has taken a part of me with him.
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“Surge” is the new normal…

I saw a lovely elderly gentleman on a recent admission to hospital. He was living on his own in his late 80s. The first time I saw him he was sobbing in pain from his principal issue: a tumour, growing rapidly, awaiting an outpatient-based biopsy that he could no longer wait for. We called the consulting service scheduled to do the procedure about moving up the date now that he was in hospital; they agreed to do so. Diagnosis: cancer.
I watched as my team tried dutifully to attend to this gentleman’s symptoms; they worked on treating his pain, clarifying his goals of care, and giving him the care and concern that every elderly person dying deserves.
The problem was, for the first three days of his admission, we were treating him in a hallway. 
Surge is the new normal. There are spikes in the winter for influenza-like illnesses for every hospital, but rarely now are there dips in the schedule where it is less busy.
The role of additional beds, long ago shaved as a cost-cutting measure, has been revived as a necessity, a means: but to what end?
Visiting dignitaries are shown the brightest, newest and best. Rarely do they seek out or get a glimpse of the most maligned, the most challenging, and the most despised parts of the health care system.
But as surge becomes normalized, so does our indifference to it.
Pope Francis said “indifference is dangerous, whether innocent or not”. A patient in a hallway was unthinkable a generation ago, but this decision is agonizingly preferable to a patient spending days on a stretcher in the emergency department.
Our elderly man got effective treatment (and a room), but after much discussion declined advanced treatment and opted for palliative care. On my last day on service, I said goodbye to him, and thanked him for his  patience, his understanding, and his dignity. I apologized to him for being unable to meet his needs quickly. He said it was alright, as he was more comfortable and at peace with his decision. He died peacefully about a week later.
Any indifference to human suffering is an affront to our humanity, our connection to our fellow humans.
On a direct level, it rarely happens in Medicine because we have outstanding emergency and crisis care. Health care is not a commodity here. On a system level, how can we work to prevent the creeping of indifference to hallway patients, shortages of adequate, safe, long-term care beds, and the human cost of long delays in delivery of non-emergency care?
It is dangerous to show only our best and shiniest examples of excellence, and we must constantly engage in the very human job of caring for our fellow humans wherever and however we can.
Even in a hallway. elderly-male-hospital-patient-hospital-bed-man-curled-up-resting-his-head-his-hand-wearing-gown-covered-58237297

A letter from your physician…

Dear Patients of Ontario,

I would like to introduce myself, but how? Not by my name because, as Shakespeare wrote, what’s in a name? Not by my age or gender or ethnicity, for those things are often subject to discrimination. Not by my marital status or number of children, for what is true today, may not be true tomorrow. So let me introduce myself in the only way that matters at this very moment in time.

I am an Ontario physician and I am suffering.

I have spent the greater part of my life striving to be the best possible version of myself.  As a child, I was intelligent, sensitive, idealistic, perfectionistic.  I believed that dreams were realized through hard work and perseverance.  And after decades of unyielding determination, when my dream of becoming a physician finally became a reality, I understood this was not by chance; it was my calling in life.

It was with this unwavering dedication that I kept strong through the many grueling years of training.  It was with this conviction that I set aside my basic human needs for the benefit of others.  And when at long last, I graduated into the working world, starry-eyed and bushy-tailed, ready to use my knowledge and skills for the good of my fellow humans, it was like taking my first breath.

Because what you don’t understand is that my sustenance comes from your health and happiness. When you are well, I am well.  When you suffer, I suffer.  When you are disappointed in me, I am even more disappointed in myself.  I lay awake at night wondering if you’re alright, wondering if I made the right medical decision for you, wondering if I had done something differently, would I have saved your life?

I carry the lives of thousands of people in my head and in my heart, and that weighs on me constantly. When I am not working, I feel guilty that I wasn’t there to help you in your time of need, but when I don’t rest, I don’t have the strength the carry the responsibility of so many lives.  And when you criticize me, when you call me greedy and lazy and self-motivated, you have no idea how much damage you are doing.  My strength comes from your health and well-being, so when you say these things, I am deflated.  I am no longer the skilled and confident physician you need me to be.

My life’s work is to keep you healthy and happy and strong, but in order to do that, I must also be healthy and happy and strong.  After years of being criticized and devalued, unappreciated and disrespected, abased and abused, I’m not sure how much more I can take before I shatter into a thousand pieces. When I tell you this is not about money, it’s the truth. Because no amount of money can compensate for these attacks on my integrity, my dignity, my humanity.   And so, with a heart that is battered, bruised and on the verge of breaking, I am preparing to walk away from what I believed was my life’s work, because as your Ontario Physician, I am suffering and it needs to stop.

Sincerely,

Your (soon to be former) Ontario Physician

 

A moment of grace from tragedy…

“Can I borrow your belt Anna?”

These are the words running through the mother’s mind as she replays the moments of the last 24 hours.  Her fun loving, straight A student, rep soccer playing daughter, gone forever.

That morning, mom had left to walk the dog.  Her teen daughter Melissa, was sleeping in and deserved a rest, so mom slipped out quietly.

Hours later when she still wasn’t up, mom went to check on her.

The horrific scene is burned into her mind. Her daughter was hanging with the belt she had borrowed from her sister. Dead. Gone.

I met this family in the emergency department several years ago. They were blind-sided by their daughter’s suicide. Were there signs they had missed? I think about them as I see teen after teen come with anxiety or depression. The pressures growing up today, are tremendous. A mean comment 30 years ago would be forgotten in a week; today teens bully via social media. The comments linger for months, forever there, for all to see. Girls feel enormous pressure not only to look like air brushed celebrities but now, the popular kid in high school posting her photos is a cause of self-doubt.

One by one, I try to help them make sense of this world they live in. Try to get their self-esteem to be about their own accomplishments rather than the comments of acquaintances online. I don’t want to miss seeing the signs. I don’t want another Melissa.

The efforts pay off in individual moments.

“Thank you” says one 17 year old girl, as I sew up her laceration.  “You don’t remember me but I came here last year after swallowing a bunch of pills. You talked to me without judgment.  You got me to see all the people in my life who would miss me and who really matter. It was hard, but I got the help I needed and I’m doing so much better. I thought you should know”.

I say a prayer of thanks in my mind. Melissa has helped another girl find her courage.kindness

When the music stops (2/2)…

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In this journey, we have had many great people supporting us.  When things were at their worst, we had many who sent us care packages, made meals, sent encouraging notes, and prayed fervently for our family.

However, when the days turn to weeks, and the weeks turn to months, it is inevitable that the support wains.  In truth, having the constant attention subside was a welcome change.  The support we received came with many mixed emotions.  It is uncomfortable to be the center of attention.

We don’t want to be “special” anymore.  All we really wanted was to be normal again. 

The truth is, we are not a conventional family anymore.  By outward appearances, our family must seem idyllic.  A mom, a dad, a daughter and a son.  Nothing overt that would indicate there was anything wrong.  As we all know, outward appearances can be so deceiving.  Our reality is that we are a family with two chronic cardiac conditions and many complications from the heroic efforts made to save their lives.

To this day, I still get questions about my son’s heart transplant.   Questions like; “how long will he be on anti-rejection medications?”  My response invariably is “as long as he is using his donor heart.”  In my wife’s case most people try to equate her situation to something they are familiar with; a heart attack or blocked coronary arteries.  To be honest congenital heart disease is something we know very little about.  The issues we deal with are a result of genetics; the structure of the heart muscle itself and it can’t be fixed.

There is no cure. It will likely only get worse. 

It would be easy to be bitter or angry.  Some would say it is not fair.  However, through our journey we have been shown so many amazing families who have journeyed with us.  Some of their stories have tragic endings.  A vivid reminder of how close we came to our own catastrophe.

Our experiences have been brutal and in many ways seemed more than we could bear.  Many times I look through pictures and re-read things I’ve written and I think to myself “did this really happen?”

Thankfully our family is still together.  Today we are OK.  Our life is complicated and will always have the constant reminders of our medical complexity.  However, we have so much to be thankful for and we WILL enjoy every day together because our future is uncertain.  We’ve been given a gift and we will do everything in our power to enjoy every moment.  We ARE better together.

 

Follow Donald at http://donaldlepp.blogspot.ca

When the music stops (1/2)…

pexels-photo-207962When I share the story of my family’s experience with their chronic cardiac conditions I never know where to start.  Our life is a tangled web of interlaced story lines.  Many people know us by our son’s spectacular 6 month odyssey in hospital.  6 months where we lived on the edge of catastrophe as my son clung to life.  At only a few months of age he underwent two open heart surgeries.  The second of which was a heart transplant.  In the background of this amazing story was a mother with her own unique journey.

My wife, Susan, was diagnosed with Hypertrophic Obstructive Cardiomyopathy while 5 months pregnant with our son, Russell.  This was unique because in her case, this was an adult onset congenital heart condition.  Shortly after Russell was born he received his own diagnosis of a congenital heart condition.  Given the spectacular nature of our son’s cardiac journey, my wife’s condition lurked in the background unknown to many who followed our story.

When the news of my son’s transplant came, many thought the end was in sight for us.

Our “Hollywood” ending had come. 

The story did not end there.  Shortly after my son returned home from hospital, my wife attempted to become a “Mom” again.  It did not take long before her own cardiac symptoms began to take center stage.  This was beyond belief.  We had walked the edge for 6 months with my son.  Were we seriously doing this again?

Would lightning strike twice? In a word; yes. 

The next few weeks had us in hospital for two short stays while the cardiologists figured out a game plan.  It became clear that a date with a surgeon was on the horizon.  These plans resulted in my wife’s own open heart surgery.  Three months after arriving home from Edmonton, Susan and I were once again on a flight back to Edmonton.  This time it would be for surgery at the Mazankowski Alberta Heart Institute at the University of Alberta Hospital.  The very same building we spent six rather spectacular months with our son.

After a year of nearly constant medical interventions, we had seen many things that most just read about in a magazine article or a Facebook post.  A couple of hundred days in hospital.  Numerous surgeries and procedures.  We had seen some of the finest cardiac care available in the world.

However, a year of “spectacular” takes its toll.  After all the past year had entailed; we were done.  You can only function on adrenaline for so long.  We were exhausted and just wanted to be left alone.

What does life look like after the music stops?

As we tried to put the pieces of our lives back together, “one foot in front of the other” became our motto.  Planning for anything beyond the next day was a well intentioned fantasy.  The follow up of our medical odyssey was daunting.

Our calendar was a myriad of scribble and multi-coloured highlights describing numerous appointments and clinic visits. 

Add in the unexpected trips to the Emergency for a variety of reasons and this is what is called being medically complex. 

Many families who have been through experiences similar to ours call it the “new normal.”  We did not have closure, in fact, I now believe the concept of closure to be a myth.  What we were encountering was a process.  A transition from the life we once knew to an uncharted new reality.

Follow Donald at http://donaldlepp.blogspot.ca

Juggling “choices”….

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Doug is a middle-aged man in my family practice, who works a steady job with daytime hours and a regular paycheck. Like many in my practice, his work is also low paying. For those like him, working for minimum wage or with precarious contract or part-time jobs, that means no benefits.

Not for prescription drugs, or psychotherapy, without dental coverage or a day of paid sick leave.

Despite this, more often than not, he’s able to cover his monthly expenses. Sometimes even with a little left to spare.

But lately has not been one of those times. And it’s weighing heavy on both our minds, leading to some very difficult conversations.

Doug has a medical condition that requires life-long blood thinning. To treat it, he’s on a blood thinner called warfarin. It’s a medication notoriously sensitive to diet and interactions with medications, sometimes thinning your blood too much or not enough. But it’s cheap. Even though there are better medications out there, they’re just too expensive for Doug to pay for out-of-pocket. There’s nothing I can do as his doctor to change that.

Recently, despite his close monitoring and diligence, Doug’s blood was just a little too thin. He began vomiting blood and was admitted to hospital. Thankfully, he was stabilized, treated and eventually able to return home.

That’s only part of his recovery story. Despite this major bleed, he still needs to continue on his blood thinners. He also needs a new regime of medications to make sure he doesn’t have another bleed that puts his life at risk.

Like so many patients on the razor’s edge of making ends-meet, this hospital admission may force him to choose between his financial security and physical well-being.

Everyday he’s been in hospital, is a day of lost wages. Everyday he stays home from work to regain his strength from his lost blood, means another day without any income and a depletion of his limited savings. Combined with the cost of the new medications he needs, he’s left with an impossible choice.

Despite being too sick to work, does he force himself to go back to the job to pay his bills? Or, does he stay home to regain his strength, making sure a premature return to a demanding job doesn’t cause him to re-bleed?

As his family doctor, this is a conversation I dread having. It’s one that no prescription pad and no amount of motivational interviewing will fix. It’s a conversation that happens far too often, for too many patients, in too many doctor’s offices.

Does he choose to pay his bills, or does he choose protect his health? What kind of choice is that?

Racism is alive and goes both ways…

I am a Caucasian doctor covering a maternity leave for a physician of Pakistani descent in Mississauga, Ontario.

She is born and raised in Canada, speaks English fully and has no accent.

She wears a hijab and other forms of dress consistent with her religion and culture.  She clearly identifies with her ethnic background and religion.

She is Canadian.

I had no idea racism was so prevalent in Canada when I agreed to cover her maternity leave.  It has shown itself in multiple ways in daily interactions–none so loud and overt as the video we have all seen about the woman yelling for a “white doctor” in a walk-in clinic in Mississauga, but present nonetheless.

Several of her patients, within minutes of meeting me, have asked me to become their permanent family physician since they “connect with me more”.  They known nothing about me or my skills, and have had no opportunity to connect or establish a rapport.   They simply know what I look like.

Then there are the many other patients who I have to work so much harder than expected to win over. They inherently don’t trust me, won’t listen to my opinion or advice and will automatically assume I am wrong.  They are often rude.   You may expect it’s because I’m not their regular doctor except there is a consistent theme as to who these patients may be.

The sad part is I am now able to predict which patients will love or hate me often based on their skin colour.   Something I never expected or anticipated.

Many of the patients of South Asian descent over 50 years old seem to have decided prior to meeting me they don’t like me before I open my mouth.  There have been a few who try to undermine me by asking the reception staff to call the doctor I’m covering for in an attempt to get what they want because they don’t trust me and others who have point blank said they won’t come back until their doctor is back.

There are only a few I have won over and now trust me with their health care.

I find both groups difficult but in light of the video,  I think it’s also important to point out how rude and degrading many people are to those from other ethnicities period. There is a nurse in our clinic who is of African descent and is black.   She faces significant attitude and rude behaviour from the predominantly South Asian descent patient population.

Honestly, I will think twice before I agree to cover another doctor of a different race. 

It wasn’t something I considered when I took this locum position because I know I am not racist.

However, I hadn’t realized so many of the patients would have such a problem with me and be so blatantly rude.

My own family physician is a male of South Asian descent.  I have moved away from him quite a distance, but I still always go back because he is great.

My Canada doesn’t discriminate.

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Embrace the Exceptional Value of Inclusivity.

pexels-photo-87584.jpegWhat does it take to go to work feeling devalued because of your race, gender, religion or sexual orientation? I can tell you, it takes a toll, and it changes us a little bit each time we experience these prejudices. I know, because it happens too often and I have seen the effects over time. Let’s stop being bystanders to such behaviours. We need to speak out when we see such bullying.

I thought naively, that in 2017, in Ontario, we had overcome so many of the prejudices of our parent’s generation. After all, Canada prides itself on being the Mosaic of Countries; enriched by our multiculturalism, diversity and exceptional fabric of inclusiveness. This week brought our dirty secret out into the open once more. We were revealed to all the world as the haters we can still be. A mother, seeking care for her ill son, was filmed asking to see a “white doctor who speaks English and doesn’t have brown teeth.” Now, I have seen many instances of patients behaving badly, especially, when they are frightened, anxious, or in pain. We make allowances for minor transgressions of civility in most of these instances, and on a daily basis, I regret to admit. After all, who amongst us hasn’t been pushy or even rude when we are stressed? However, this woman went well beyond these lesser transgressions in her diatribe. She felt it was within her rights to denigrate a physician, because of his race and his appearance. All semblance of polite Canadian values fell by the wayside. The on camera footage stripped bare for us, our collective failings.

How did it come to pass that the colour of a doctor’s skin, his accent or his dentition, should determine his competency, let alone his compassion and his humanity?

Everyday, in clinics and hospitals, around the country, micro-aggressions play out against medical practitioners. Most of the time, our trainees face the brunt of these offences. I have had to intervene too many times to count, when a patient is refusing the care of my resident simply based on their gender. Whilst we strive to make all patients comfortable as much as possible, please understand that when you enter a teaching hospital, we ask you to be open minded and generous, so that we can train the next generation.  If for religious, or other reasons, you need to see a same sex provider, we will do all we can to accommodate your request. But, when your care is of an urgent nature, or the best clinician available is not of your preferred gender, we ask that you consider why we are recommending care by this physician. And if, by chance, our colleague, whether in training or as a licensed/experienced physician, is different from you, please see them for the human they are; the one who has chosen to make your life their life’s work.

We all want to be valued and respected for who we are and what we do. It’s what we must demand of each other.

Why I did (but shouldn’t have) become a doctor…

There are a million terrific reasons people go into medicine. Sometimes it’s to follow in the footsteps of a parent or cherished uncle. Sometimes it’s to harness your gifts with people to a higher purpose. Sometimes it’s to build on a budding career in science or community engagement. Sometimes it’s a passion to be in the ER or OR, in the thick of things to save a life, sleep be damned.
And then there are those of us in medicine for the wrong reasons.
I’ve identified five of them: ego; greed; spite; cultural conditioning; and a phenomenon I’m sure I’ll come with a catchy term for someday – the societal understanding that medicine is what smart, accomplished kids are supposed to strive for.
There’s naturally all sorts of overlap here, and I’ll admit to at least three.
Realizing that your place in life is to serve as a poster child for bad career counseling is disheartening to say the least, but it’s also somewhat liberating. I’m free to describe the realities of life as a doctor free from any sales pitch or sugar-coating.
Yes it’s a great career, but it’s not the be-all and end-all, even when you’re a smart and compassionate do-gooder.
So why did I go into medicine? I’m still not entirely sure. In hindsight, my calling might very well have been a wrong number.
(the following is an excerpt from my memoir, The Flame Broiled Doctor: From Boyhood to Burnout in Medicine)
LIKE ANY BRAINY big-city secular Jewish boy, I grew up with an impressive but limited menu of career options. At the top of the list, naturally, was Doctor. If I couldn’t hack organic chemistry, second choice was Dentist. If I couldn’t handle blood, Lawyer. If I wasn’t good with people, Accountant. Family Business was a fallback #5, but nobody in the family had built any kind of “empire”, and I had neither any passion for business nor a head for making deals. I seem to remember Pharmacist somewhere in the mix of recommended careers – “How hard is it to count pills?” my irascible Nana oft inquired – but that one was only pushed on the girls for some reason.
But bright and brainy I was, standing out even amongst the crowd I went to school with, the children of lawyers, psychiatrists, and professors. Granted, my grades couldn’t reach the rarefied heights of those on the Asian kids’ report cards. Too many hours of Nintendo games and reruns of Three’s Company saw to that. But I could walk into a two-hour calculus exam with nothing but a pen – I would never sully myself with something erasable – and stroll out forty minutes later having answered every question and double-checked my work. My aptitude for science didn’t fall far behind my gift for math, and my essay writing was never less than solid.
Coming into university, I was the Total Academic Package, maybe the best from either side of the family.
I was destined to be the family’s first doctor. As far as I knew, or at least convinced myself, that was the endpoint.
Get into med school, game over. You win. That part I understood. Medicine was as close as you could get to lifelong job security, if not always in the city of your choice. Your income ranged from respectable to stratospheric, depending on the specialty, although it honestly wasn’t about the money in my eyes.
And therein lay the problem. Why was I pursuing medicine? I craved the degree, to prove myself to family, friends, and the doubters from times I wasn’t on my game at school. A chip on the shoulder and a little ambition can take you pretty far if you have the right skills.
I just never put much thought into whether I wanted the job.   
forheadshot   Follow Dr. Frank Warsh at http://drwarsh.blogspot.com