What happens when you have nowhere to go?

What happens when you are almost 8 months pregnant and somehow find out that your baby has something dreadfully wrong?  Something that is not going to be compatible with life?  That he is going to be born, suffer and then almost certainly die?

No mother can bear that cross easily.

I found out by an ultrasound done for other reasons when I was 30 weeks pregnant that my baby had multiple problems that could not have been picked up at the regular 18 week ultrasound. This wee one who was dancing in my belly was going to be born, suffer and die.

There was a choice offered to my husband and myself. We could leave the country and go to Kansas where I could have a late Fetal Indications Termination of Pregnancy. Or we could do nothing and give birth to a baby who would live for a while, suffer and die.  I was stunned, broken.  My upbringing was strongly catholic, although I had essentially stopped being a regular church goer.   This was an option presented to us by the genetics team at the hospital and this was the option that we picked.  They made the arrangements and we embarked on a dreadful journey.

The patients were all seen on a Tuesday morning at the clinic run by Dr Tiller in Witchita.  When we arrived we were jeered at and pelted with rotten fruit and vegetables by people carrying placards ” Tiller is a Baby Killer ” Shaking I ran through the doors escorted by armed security guards and then passed through the metal detectors.

Then it was like a peaceful home.  The warmth of the staff was akin to an envelope of non judgemental kindness and love.  We as a group understood that we would be there for 5 days.  In that time period we would be led gently through the steps of having a late Fetal Indications Termination of Pregnancy .  Yes, an abortion…  and that is what happened.  The day before we left we saw our son. Peaceful, dead, but still our beautiful son wrapped carefully in a blankie.  The nurses made sure that we didn’t see anything that would traumatize us, but left us with that one last memory.  We were told that we could contact them at any time and request the blankie,  hand and foot prints if we wanted them.  Arrangements were then made to send him home to Canada for autopsy etcetera.

Dr Tiller was assassinated on May 1st 2009.  He had survived a previous assassination attempt in 1993.  Second to the loss of my baby this day was one of the saddest days of my life.  After Dr Tiller died the clinic closed. There are very few places left that a woman in this dreadful situation can turn to.

https://drjengunter.wordpress.com/2016/06/22/what-you-learn-from-doing-abortions-after-20-weeks/amp/

 

 

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“When a Grieving Mother Talks, Listen”

It’s been nearly ten years, but the second I read the story, it came flooding back to me.

She was a patient of mine for a year…and at 8 months, she delivered her dead baby.  A stillbirth.  On an ultrasound, the heart was found to have stopped beating.  She hadn’t felt the baby move and after some hours of eating, walking around and trying to get the baby to “wake up”, she went to the ER and was told the news.

The medical part of this story is hard enough–to go through labour and deliver a baby that will never be warm, never cry, never suckle or cuddle in your arms.  To go through labour, and know that you don’t have that precious gift to keep in the end.

The after-math though… that’s the hard part.  The part that Dr. Jen Gunter so eloquently expresses as a member of this “saddest sorority.”

For my patient, she came in weekly for months, then perhaps bi-weekly or monthly.  She often came in to cry.  To hold my hand. To have a safe space to express her utter devastation.

I remember, around 6 months, her husband had told her, “you must get over this, we have two other children”.  And she knew it…of course she was guilt-ridden in her bereavement of her lost son that she was neglecting her live children.  But she couldn’t let go…she didn’t know how to.

Sometimes, in fact, very often, we don’t have the answers.  Sometimes, in being a physician, it is not about fixing the problem.

It is about being the healer.

It is allowing someone the space to heal. In their own time, in a safe space.

That’s all I could do for her.  Offer her the safe space and words of comfort that she needed.  Because eventually, that’s all there is left to do.  Sit together and wait.

Thank you Dr. Gunter, for sharing your story.  A story shared by millions but that is often kept behind locked doors.

 

 

A season to be kind, patient & understanding….

Happy-New-Year-2018-Images-4Physicians who work over the holidays in Canada see a predictable pattern— a lull in the days up to and including December 24, and then a surge beginning as early as the night of December 25th. Regardless of ethnic and cultural background, it is a statutory holiday on the 25th, with little beyond gas stations, movie theatres, some restaurants, and hospitals open.

There is a joie de vivre among those who work the holidays — again, ethnicity and religion have less to do with it than the reduction in available services over a holiday period. This bonhomie extends to patients — few people want to be admitted over the holidays, especially in inclement weather, but those who come are often quite ill. They are eager for discharge when it comes, hopeful to get home to their families.
But the holiday period carries risks with it.

Patients on restricted salt diets are exposed to rich foods and familiar company, so exacerbations of heart disease are common. People will forsake treatment of their illnesses until after the holidays are done, for fear of missing out on family gatherings. Snow shovelling is a significant exertion, and when undertaken hurriedly by those ill-equipped to handle the stress, can provoke heart attacks and strokes.

It’s also a time when family members gather who may not have been together for some time— so noticing that someone has lost or gained significant weight, looks pale or jaundiced, or has fallen and injured themselves moving more than they usually do for a family gathering.

They may also share any viruses they may be harbouring… Historically a Christmas feast was the last time a medieval European family would all gather for the winter, and given the variety of ailments and the harshness of the winters, might be the last time elder members saw their family as a whole.

CNN reported on the Christmas mortality spike in the US in 2013.

http://www.cnn.com/2013/12/23/health/christmas-death-rate/index.html

It means a surge in acute illness, at a time of the year when resources are limited— many family doctors’ offices are on reduced hours or closed for the holidays, usual hospital departments for outpatients are closed, and only emergency and inpatient services are fully staffed. So while emergency care is available as always, it is also often the only game in town. At to this, there is a seasonal peak in the number of influenza cases that tends to begin the week after Christmas.

It’s a perfect storm for incredible volumes in emergency departments.

Forgiveness and understanding are the order of the day.

Many people are ill and need services, and wind up stuck in the bottleneck that is the ER triage queue or waiting room.

Patients are triaged by need, not duration of stay.

Everyone deserves care, but have some understanding of how the surge and flow affect not only your health and those of your loved ones, but the emergency services workers, nurses, physicians and housekeeping staff trying to keep atop the wave.

Connect with your fellow humans in the department, look out for each other, and be safe.

Best wishes from Healthcare and Humanity for a safe and healthy 2018.

 

The joy that freedom of choice gives…

assisted-dying-palliative-careI felt oddly uncomfortable leaving my patient’s home. It was unusual for me to be leaving, knowing with certainty that the patient would not survive the day, and knowing that I would not be going back to the home, not even for the pronouncement of death, which is my usual practice.

Duane was a man in his 60s referred to our community palliative medicine group with a degenerative neuromuscular disorder. At the time of the referral, he had already made the decision to pursue a medically-assisted death (MAiD), something that our group does not provide. I wondered why the referral was made to us in addition to the local MAiD providers, since he was hoping for MAiD within a week or so. I reviewed the information provided and saw that he had a number of symptoms that had not really been addressed and I felt that this patient, like anyone else quickly approaching the end of life, deserved better symptom control, regardless of whether his death was to come about naturally or by his own intent.

I got to know Duane very quickly. I recognized much of the fiction on his bookshelf at home, as he shared many favourite authors and genres with my wife, as well as musical tastes. I was impressed by his collection of amazing guitars, which sadly he could no longer play due to his illness. He had an infectious zest for meeting people and welcomed my assistance with his symptoms. With some simple interventions, he found his pain was under control, his breathing was less uncomfortable and his appetite had returned. His energy was better and he was able to enjoy his life more. He was very appreciative of the information provided to him regarding the palliative approach to his care and he took his time considering his options. He was most thankful for knowing that at least there were options.

I was clear in telling him that I was not there to change his mind about MAiD, and that the decision was his to make.

My role was to improve his quality of life, for however long that life should continue, just like any other patient.

Duane’s wife, Sherry, struggled with his decision to proceed with MAiD, but she and their children all supported Duane’s decision.

When I saw Duane that last time, he was almost euphoric. His disease, which had taken away his control over so many parts of his life, was going to be controlled by Duane’s ultimate decision. He was eating a huge steak, and offered me some. His MAiD procedure was going to take place that evening.

I have gotten used to the fact that when practicing palliative medicine, arriving in a person’s life so close to the end usually creates a rapid building of a relationship between physicians/nurses and the patient and his/her circle of care. My first visit with Duane was on the 17th of the month, my last was on the 25th. I felt I had known him much longer, however.

On that last day, I told Duane that I was happy that he was happy, and that I was happy knowing that he was made his decision having experienced some of what palliative care could offer.

I was sad that his life was ending but I understood, after our long conversations, where that decision was coming from. It was very much in keeping with the person himself. Despite that, I told him that I did not feel that I could be in attendance for his death. My own personal ethics are at odds with MAiD, and I felt that witnessing his death was something that I would not want to see.

Sherry told me later that his death was peaceful, that he never wavered, and that the doctor was sensitive and competent. Nothing unexpected happened.

In my years providing palliative care, I have witnessed many manners of deaths, some dramatic, most not. I have gotten to know many people in their last days, weeks, months. I don’t know why Duane’s journey reappears periodically in my mind, months later. Well, I have some ideas about why: the personal connection, the intensity of the work, his almost unconquerable optimism in the face of his upcoming death. But despite the fact that I have experienced all of these elements with other patients, Duane keeps resurfacing.

I’m sure I will figure it out eventually.

Miracles do happen…

pregnant-pregnancy-mom-childI didn’t know what to say. I didn’t know how to say it.

I know I didn’t want to say it to her.

“Your baby has died”.  “The heartbeat is gone”.  “Another miscarriage”.

My heart sank.  I knew what this meant to her.  I knew it would have to be on the phone–there’s no way she would wait to see me in person and asking her to come in would send her into a panic.

Another miscarriage.  Another baby-that-didn’t-happen.


She brought her daughter in.

Shrieks of laughter, giggles and and with snuggles, Emma jumped into my lap to grab my stethoscope.

Her mom laughingly followed her into the room holding her new baby boy.

We both looked at each other with wide smiles on our faces.

She had made it. Her family had come together.

Emma was adopted from Peru.  A beautiful 4 year old girl with wide as saucers eyes, a smile from ear to ear and so full of love, everyone who met her parted with tears in their eyes.

Her brother was born within the year she came to live with her mom.  A baby-that-did-happen.

After 5 miscarriages, God smiled down on my patient and made her a mother twice in one year.

Miracles do happen.

The death of a fighter

old-man-time-watch-160785
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.

“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