Patient Engagement

The Many Guises Of Caring And Compassion

Dr. F.* touched his shoulder and said:

“Listen Mr. Martimianakis, I know this is all sudden. It’s a lot to digest. But if you were my brother I would not let you leave the hospital. You are like a ticking bomb…and you still have a little girl to raise.”

He turned to my baby sister who was 6 at the time and looked at her. My father followed his gaze, took a deep breath, asked for the papers and signed the consent. He had by-pass surgery the very next week. According to dad, Dr. F’s intuition to drop the scientific explanations and reach out to my father with a touch and a comment that most would find “un-doctorly” had saved his life.

A different doctor 15 years later tried the very same thing with me and failed miserably. It was 3 am and Dad, who now also suffered from ALS, was in the emergency room because his implantable cardioverter defibrillator was going off every few minutes, shocking him. It was so painful that every time he was shocked tears would stream down his cheeks.

Dr. H tried to have me convince my father to authorize a DNR order by telling me that if I didn’t I would be prolonging his suffering:

“We don’t do things like that to our loved ones…if we have to intubate him he will never be able to breathe on his own again…how could you do that to him?…It’s selfish to do that to him…

I kept asking for scientific explanations. She kept trying to personalize things. I was getting very irritated and she was getting very frustrated. At one point she said:

“Listen, if you don’t discuss the DNR issue with your dad we cannot administer the medication to stop the arrhythmia.”

Why wouldn’t they be able to take him off the ventilator if he had to be intubated? She never explained this to me and I felt like she was emotionally manipulating me. I agreed to speak to my father. It was not an easy conversation for either one of us. But he was in pain and when the next shock came, he turned to me and said:

Tell them no tube

A few minutes later they administered the medication. I stood shell shocked, holding my breath. The medication took effect almost immediately and the shocks and pain stopped. That’s it. There was no code blue, no drama. I remember thinking:

“What the heck just happened? All this time they had the power to stop my dad’s suffering and they were badgering me about my personal ethics with regard to DNR orders?”

My mother had been labouring for over a day and a half with little progress. The baby at one point started showing signs of distress. The attending physician called for an emergency Cesarean section. My mom pleaded with him to call “her” doctor before he took her to surgery. “Her” doctor wasn’t there because he had pulled his back earlier that week. But despite his visible pain, when Dr. R. heard what was happening he rushed to the hospital to support us through the delivery. We were all very frightened. Things were touch and go for a while. He stayed for hours, until the C-section was completed and until thankfully my mom and baby sister were stable. He personally brought news to us from the operating room every few minutes.

When Dr. R passed away there were over 2000 people at his funeral. Many were children he had delivered. Someone said it felt like he had lost a parent. Many of us nodded our heads. Since his passing, my mother has never referred to any other physician as “her” doctor ever again.

Dr. S called my children “little monkeys”. He started taking care of each of them hours after they were born. He made them feel special. He knew the kids in their idiosyncratic ways. He knew for example that my son was not a whinny child, and paid attention to his very understated descriptions of his symptoms. He would remind my son often that:

Little kids should not be in any pain, even small pains need attending to, so make sure you tell your mother, ok?

By the time we got my son to the hospital when he broke his arm, he was in really bad shape. The nurse told us it would be a while. We waited for 45 minutes and I tried to soothe him and distract him. It wasn’t working. At one point he left my side with a determined face and went to the nursing desk, and said:

“Excuse me, I know there are a lot of people waiting and I don’t want to bud in line, but I am a little person with pain that is too big for me, I have been very patient; maybe adults can wait for this long for medicine but little people cannot. I need some medicine for the pain and I need someone to help me with my arm please; maybe you should call Dr. S, he knows what kids need.”

The nurse took his file from the bottom of the pile and put it on top and went off to get him a painkiller. Dr. S had taught my kids many things, but most of all to recognize that they should expect caring and compassion from their health care providers. To know to express how they needed to be cared for.

My father’s heart gave out one summer night. The coroner was called to examine my father and pronounce the death. He spoke to my mother for a few moments and then turned to the paramedics and said:

Put the body on the floor so I can examine it.

My mom lost it.

Excuse me,” she yelled, “You do not get to call my husband ‘a body,’ he is a person and he has a name. He is someone we love.”

She burst out in tears. The coroner apologized to my mother and turned once again to the paramedics:

Please spread a sheet on the floor and place Mr. Martimianakis gently on it.

Compassion and caring are daily acts of negotiation between health care providers, patients, and their families. These are complicated constructs that cannot be packaged neatly into a curriculum module and taught to medical students and trainees. As educators, I think we do a disservice to our students if we do not discuss openly our struggles with managing the complexity of being compassionate for different people.

I believe the telling of a story is an act of power. I didn’t want to choose a story that left readers thinking that everything with our health care system is broken. Like the time I hugged a nurse for helping me through a difficult time and she cringed giving me a look of disgust, or the time a surgeon reprimanded me for poor parenting when my daughter (who was around two at the time), kicked and screamed as they tried to get an IV line going:

My team cannot be disrespected like this.”

How could I write just about my bad stories when my family and I have received and continue to receive such wonderful care over the years? There are so many healthcare professionals I have encountered in my life who have approached their work with thoughtfulness and compassion and who have, with their care, improved my life and that of my family. I could have written about the surgeon who saved my daughter’s vision, or those folks in the labs doing their work behind the scenes, who ensured my test results, showing that I was okay, got to me before the long weekend so I wouldn’t worry.

And then there was the irony that needed reconciling. Sometimes, the very people that one day care for you with compassion and understanding, can be the same people that in a different instance let you down.

Caring and compassion seems to me to be about accepting people with all their imperfections and struggles. It’s about relationships, which will always be fraught, but still hold the potential to be made better. Most of all, its about realizing that caring and compassion does not shelter us from pain or disappointment and absolve us from the responsibility to communicate to our health care providers what we need.

In the end, I chose to write the anecdotes as they came to me. One led into the other. I stopped when the word limit was getting too high. I know I can pick the writing up again and just continue the re-telling. Or someone else will. The story of caring and compassion, for me, is just too complicated to write it any other way.

– Tina Martimianakis, March 2015

*Note: Health Care Providers have been assigned pseudonyms.

Leave a Reply

Your email address will not be published. Required fields are marked *

Want to learn more about AMS and the people and projects we fund?
Follow us on twitter.

Interested in learning more about AMS funded opportunities? Sign up
for our newsletter to gain access to our funding calendar (this newsletter
link scrolls to the footer.)