Saturday, 11 January 2014

The ethics of compassion

It is unethical not to be compassionate when you are a physician.  Treating people or their families poorly isn't helpful to anyone in a stressful situation.  But a big problem exists there - ethics is not taught in medical school.  Then again, neither is compassion.  So where do you learn them?  Can you learn compassion, or is it something you just have?

Or don't have?

She could have been anyone's grandmother.  White hair, glasses, plenty of wrinkles.  But she was not your typical 91-year old.  She lived by herself, she cooked for herself, and she still had a twinkle in her blue eyes.  She was not doddering and did not need a cane or walker, though she took each step slowly, carefully, deliberately.  She didn't drive, but she still went food shopping with her daughter every week.  And somehow that was where it all fell apart.

She paid for her groceries and walked out of the store.  She either didn't notice the curb or didn't remember it.  It was only a few centimeter difference in height, but as she missed the step, her weight shifted forward.  Her daughter tried catching her but couldn't reach her in time.  She struck the pavement, her face taking the brunt of the impact, and she passed out immediately.

She woke up as she was being transferred from the gurney to my stretcher.  "What's going on?  What happened?" she asked.  I asked her name.  "It's Catherine", she replied, looking around the room, frantically trying to regain her bearings.  "What happened?  Where am I?"

I explained that she fell and was in the hospital.  She was a complete mess - her hair was matted with dried blood, her left eye was swollen shut.  There was a large laceration on her forehead.  Her nose was bleeding and angled to the right.  I suspected facial fractures but feared worse. 

"What's happening? Where am I?"

That's when the perseveration started.  Repeated questions - a sure sign of a brain injury.  But how bad was it?  A concussion at least, to be sure.  But was that it?

"What happened?  Where am I?  Where's my daughter?"

After assessing the rest of her and finding no significant injuries, we took her to the CT scanner.  I looked at the images of her brain quickly as they were taken, and there it was, my fears confirmed - a large subdural haematoma, bleeding in her brain.  Considering the amount of blood I was very surprised she was awake at all.  It was perhaps a survivable injury for a younger patient, but only with a risky and aggressive brain surgery to remove a segment of the skull and drain the blood.  But in someone this age...

I went out to the waiting room where her daughter was anxiously awaiting news on her mother's condition.  She handed me a piece of paper with a list of her medical conditions, medications, and allergies.  I looked through it quickly, and one word immediately jumped off the page: warfarin, a very potent blood thinner. 

Damn it.  

I took a deep breath and carefully explained to her daughter what was happening, how her mother's brain was bleeding, and how the bleeding would be difficult - if not impossible - to stop due to the blood thinner. 

"Is she awake?"

"Yes, but probably not for too much longer."

She looked surprisingly calm despite the devastating news.  

"What's happening?  Where am I?" Catherine repeated as we walked in.  The nurse was answering the question for the 8th or 9th time using a quiet, soothing voice, despite the fact that she was clearly getting annoyed.  I waited for a few minutes and answered a few more questions, then I excused myself to consult with the neurosurgeon.  As I was loading the CT images I told him Catherine's medical history, about the blood thinner.  He took one look at her scan and laughed.  "She's ninety years old?  Ha!  Nope, not survivable.  Need to talk to the family.  She's as good as dead."

I knew that would be his impression.  A person that age with that size bleed on blood thinners is not going to survive no matter what we do.  "I'll talk to them," I said.  I didn't expect his laugh, and I didn't like his attitude.

By the time I got back to Catherine's room a few minutes later, she was already much sleepier, but still talking.  "What's going on?"  As I told her daughter the news, she nodded knowingly, clearly having figured it out already.  When I started to explain that surgery wasn't an option, she stopped me and smiled sadly.

"Thank you, but she wouldn't have wanted that anyway.  We've had many conversations about this with her over the past few years.  You know, just in case.  And she's told us she would want us to let her go.  How much time do you think we have?"

I liked how she said "How much time do WE have".  Most people would have said "does she have", but she was asking how much time they had left together.  I appreciated the subtle nuance.  I told her maybe minutes, maybe hours.  But not long.  She took her mother's hand, and I left them together. 

I went back to see them a few hours later.  The rest of the family had arrived, and they all looked calm and peaceful, Catherine included.  She was unconscious, barely breathing, but comfortable.  Her daughter saw me, smiled, walked over to me, and gave me a wordless hug which said "Thanks" louder than words ever could. 

I don't like watching people die.  It's the opposite of what I do.  But sometimes it's the compassionate thing to do.  Sometimes the right thing, the ethical thing to do is stop fighting.  Sometimes the person we really need to support is the one who is still here, standing at the bedside of the one who is not. 

25 comments:

  1. This was beautiful. Thank you.

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  2. You are a great writer, and each time I read your entries you make me wish I'll find a doctor as compassionate and competent as you, if I or someone I love ever need one.
    Greetings from Italy!

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  3. I loved this essay! Sometimes the best thing we can do is to do... nothing. Let a person's dignity stay intact, let a family's memories be happy ones instead of memories of machines, doctors and nursing coming and going, and no privacy.

    Blessings to Catherine's family, and to you to, DB, for knowing when to do the humane, respectful thing.

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  4. This story really affected me. Thank you for sharing.

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  5. Beautiful and compassionate. Brought tears to my eyes, thanks DB for sharing...

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  6. Absolutely beautiful. Catherine went peacefully and with dignity. With your compassion. Thank you, DB.

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  7. Tears steaming down my face, I stood by the bed of my dying father, holding his hand and wishing that it wasn't the end. He looked at me, lifted his chin and nodded, questioning the tears on my face. I told him that I was afraid. His reply was "I am not afraid". He gave me his strength and courage at that moment to forego any aggressive treatment and to have him moved home with hospice care. My Mother was able to sit with him, sing the songs for him that they both loved and hold his hand. When he died a few days later, he was surrounded by his sons, daughters and his loving wife of 65 years.

    I am forever indebted to the compassionate and caring physicans, nurses and palliative/hospice team. They enabled my father a peaceful death and provided tremendous emotional and informational support to our family.

    Thank you for your essay, it is representative of my experience with medical professionals.

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  8. Just so I don't cry again, I'm going to lighten it up a little. My mom, who is 88, told me that if any of her kids (there are 3 of us) keep her on a machine to keep her alive, she'll come back to haunt us after she finally passes on.

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    1. HA! Same as my mother at 93! My DAD? He's a different story. He called just before Christmas letting me know "I plan to be around another 10 or 11 years and I want to make sure you're somewhere I don't have to worry about after I'm gone!! He was SERIOUS! (My health is ten times worse than theirs). He goes to the gym 4 times/week, is a recent vegan, cancer/broken hip/BAD case of shingles survivor, (just in the past 2 years! He's also a BIT of a "control freak", always has been though, it just got worse with time. Every time he's in the hospital, my daughter calls, (she took after me & is an RN-Paramedic at their local hospital), telling me to "DO SOMETHING!! The whole floor of nurses is about to walk out!! He thinks he's the only patient in the hospital!!". And yes, he wants "ALL MEASURES" to be used WHEN something happens. He doesn't plan on leaving this world without a fight-to the END! There's a reason my kids, and my nieces & nephews ALL call my Dad "Grumpy Gramps"! ;).

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  9. I sat by me dad's hospital bed in December 2002. He was 76, had cancer and lost my mom 10 years earlier to cancer. He asked me the hardest question I've ever been asked. He looked at me and asked "why am I still here?" I immediately knew he was not asking me why he was still in the hospital. He was asking me why am I still here on earth. I said I thought it was because he was so entertaining. He wanted to go home. Not to his house. He wanted to go to be with my mom. He was released from the hospital on Friday to be set up on Hospice on Monday.

    When we got him home he asked me what day it was. I told him it's Friday I believe it was December 20th. He knew we were coming up on Christmas. He told me I'm checking out by Monday. I don't want to mess up everyone Christmas, he said. I laughed and along with my sisters we got him situated in his bed and made sure he was comfortable. We talked a bit and he drifted off to sleep Friday evening. All three of his daughters there. He never woke up again and passed away peacefully on the bright sunny and cold afternoon of December 22. True to his word, he checked out before Monday.

    That question, "why am I still here," has haunted me. I wonder if I said the right thing. I wonder if he knew what a hard question that was. I didn't have much experience with death or the process of dying. I vowed then I would find a way to learn about the process help someone some day to handle something that is so hard.

    So I did learn. I learned a lot and I learned it by the "proverbial baptism by fire." I became a Police Chaplain. There are no text books to learn to be a police chaplain. I have seen enough of the human condition to last me many lifetimes. There are no text books for compassion. It can't be taught. Compassion is on your heart. Knowing when to whip it out and use it is the tricky part. My learning process continues as each situation is different.

    If my dad were still here today, and asked me the same question, I'd answer it the same way. My dad was not a mushy guy. I like to think my answer was shown in my sitting by his side and just being present. And adding some levity to a question that there is simply no right or wrong answer.

    Doc thanks for the continuing education on what compassion means and how to use it.

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  10. This was my Mom's story..nearly the same. I am grateful that we were together, and that her wishes were well known to all (Mom had several valve replacement surgeries). It certainly was not easy, but I knew it was right.
    Thank you.

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  11. DocB..I would expect to find surgeons, on the whole, a big-headed bunch. Honestly, the ability to cut into a living person takes quite a bit of nerve, and in the case of neurosurgeons it can go pretty far..the rewards are great, the mistakes devastating. I have met several over the years, The young resident neurosurgeon (never, ever call him a neurologist by mistake, ye laymen!!) who believes he can do no wrong..who sometimes ages into an abrasive 'God-complex', know it all. And the young resident neurosurgeon who believes he can do no wrong, who ages into a well balanced human being who reveres the creation he operates upon, and respects the sanctity of the life, emotions, memories, the person contained therein..and those who care for him or her. We are blessed to know several of the latter quite well, and a couple of the former less well.

    The response by family members can be greatly affected, just by the perceived attitude of the first contact in the hospital. We live in a society where people are devalued for a variety of reasons, age, education, economic status, disability, race, weight, sex..any of which could be perceived as reason for poor treatment, when it is really a personality issue. It is one thing to speak the truth to family..in a way they can understand, and to be there to answer questions, because they will come. It is quite another to give the 'bad news' in a condescending manner, brusquely..leaving the family to wonder what to do next..rushing down the hall with coat flapping in the rush to get to someone (better) who can be saved. I have a feeling few have watched your coat disappear down a hall in complete confusion and dismay..

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  12. Love this! Beautifully written. It's extremely nice when patients and families accept these realities, even if they are hit smack in the face with them. This reminds me of a post I read a month or so back, which lays out "The Ugly Truth," that most in intensive care settings have to deal with.
    "Diary of an Intensive Care Nurse": http://nypost.com/2012/12/09/diary-of-an-intensive-care-nurse/

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  13. Compassion, seems so simple, yet I've found it hard to come by with surgeons myself.

    I've had there major operations in the past five years. The first, a bowel obstruction, required a surgeon with zero compassion. Everytime he came into my room to speak with myself or family prior to surgery, he was on his phone or looking out the window. Never faced us, never was polite, just cold and seemed annoyed that he was performing the surgery (I had been in there two weeks already, waiting on a diagnosis or other treatments but the infected/blocked section wasn't improving).

    When I spoke with the staff about this, they told me, "We have been aware of his bed side manner before, you are not the first to mention this, but he is an amazing surgeon..."

    Amazing or not, even a slight bit of compassion from him prior (and after, he wasn't any help with pain control after, they went over him finally to get me pain control) would have given me just a bit more comfort and ease when I was going under.

    Am I grateful, of course, the surgery was successful (pretty much) and i'm here to write about it. However, add a patient, compassion from any doctor just makes out that much easier when you're scared and nervous and confused...sometimes you need the professional to comfort you, whether you have all the family in the world there doing the same.

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  14. My dad passed away of cancer 6 years ago.He had been dealing with cancer for many years,there where no treatments left,he was wasting away.The day he passed my parents where on vacation.He wasn't feeling well and they went to the hospital.The doctors made an x-ray and asked my mother if she knew how sick my dad was.She said yes,she knew.My dad said he was afraid,i assume of dying,so they gave him a sedative to take the edge of.He passed that evening without fear and pain with my mother beside him.No machines!Just beautiful!

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  15. I don't think that compassion should just be for doctors. When I worked in the nursing home, I had many nurses and cnas that seemed to only be there for the paycheck. Mind you, we did not get paid what we should have considering all we had to deal with.

    I would alert nurses of a change in a patient, and all they seemed to do was say, "well, they're on hospice. There is nothing I can do". It wouldn't have taken but five minutes to go in the room, check out the patient, ask if they feel ok and if they can do anything, and walk away. Sometimes all the patient needs is to feel cared for. I made sure every night to tell them sweet dreams, help them say prayers if they were religious, and tell them when I would be back. Compassion is not learned, its inherent. Some people just have no problem being jerks, especially if they are good at what they do.

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  16. i love this blog. this one made me cry like a baby. that is truly one of the saddest things i've read in a while.

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  17. I don't work in the medical field, but I did spend about 3 years in and out of the hospital and ER as my mothers health declined. After spending about 5 hours a day by my moms bedside 7 days a week, I can say most of the staff I came across were wonderful. Some are robotic, but most of you docs and nurses are worth your weight in gold, and I can't thank you enough for what you do.

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  18. damn you doc bastard. you got me boohooing over here!

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  19. Doc, i just want to say thank you. Ive never been your patient (at least as far as i know cuz have no idea where ur from and one of the places u describe u work at can easily describe my local hospital, not gonna say which waynor where it is though), but i want to say thank you, for this. This brought a couple (manly, of course) tears to my eyes. I found it very touching. I think i can speak for the whole of your readers and say thank you for all you do for these people you take care of- while i love reading the hilarious patient stories, its stories that touch me like this one that really makes me appreciate what doctors do. and though i have no plans to become a medical proffesional of any kind (sorry doc), i must say thank you. Thank you, for everything. For all the laughs, and the tears that no doubt many of us all shed reading this. Thank you.

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  20. As a nurse, I really appreciate this entry- especially the very last line, which is so much of my job.

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  21. Dammit Doc, I come here for laughs. This made me tear up.

    As the daughter of two physicians, though, I really appreciate this entry. So thank you.

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