A Spiritual Approach to Compassion in Healthcare

This is a presentation I gave last year on compassion in healthcare in Waterford Institute of Technology. I have amended it slightly to fit into this blog post, so here goes.

I was asked by my friend Mary to make a presentation for the compassion workshop. While I immediately agreed I failed to suggest a title fast enough, so like all good friends Mary picked one for me. Mary sent me the above title much to the amusement of my family, friends and particularly my father, who laughed so hard he nearly cried. You see my father and I are very alike, we like facts, we are not very tactile and have a real desire to question all things before we make up our mind. My mother is the complete opposite so it is therefore no surprise to me that I was born on the feast day of saint Francis of Assisi who owns my second name and named after a family friend a priest by the name of Father Hilary. Now for me religion was just about births deaths and marriages. I revolted again the notion of going to mass and choose instead to say my prayers to myself, my way. It wasn’t until I got depression and some other chronic conditions that I really started to think and see things differently, to explore aspects of life and illness. Lately, I have started to think about life and death, about the components that affect us in life when you are ill and about what can be done by both patients and caregivers who engage in a rewarding relationship.

So as you read this you may feel it’s all very disconnected, it probably is, but I offer these thoughts not as someone who has any answers but someone with lots of questions. I offer only my thoughts on what it’s like to have a chronic illness and what I think about compassion in healthcare.

I would like to start with the word pity. Atul Gawande in his book “Being Mortal” quotes from a part of Tolstoy’s “The Death of Ivan IIyich” , he says of Ivan IIycih when he was dying.

"No one pitied him as he wished to be pitied," writes Tolstoy. "At certain moments after prolonged suffering he wished most of all (though he would have been ashamed to confess it) for someone to pity him as a sick child is pitied. He longed to be petted and comforted. He knew he was an important functionary, that he had a beard turning grey, and that therefore what he longed for was impossible, but he still longed for it."

As someone with a chronic illness, I never thought about the word Pity, it wasn’t a word that meant anything to me, but when I read this I understood it so well, all because of an off the cuff remark made by someone while I was having a chronic bout of arthritis.  I was in constant pain and feeling severely the weight of depression on my shoulders and they said to me “stop trying to make us feel sorry for you”. Their words stunned me.

So as you can imagine this comment shook me to my core and I started to analyse the situation. Was I moaning, whingeing, complaining too much, but then I realised I was just looking for some kindness, some compassion, during what was a difficult time. I realised then that I was not looking for pity but compassion and I started to think about when and why we can show compassion in some situations and not in others. You see if there is a cure it gives a level of hope and you can be compassionate because there is an end point in sight. With a chronic illness it becomes more difficult because this is something that is going to be on-going and to be compassionate in this situation would require commitment. It is this requirement for commitment that many find difficult in long term situations.

Now if you take that as the premise you can apply it to a myriad of situations. In GP care, it’s interesting to note that some illness instil a greater level of compassion. In a lot of cases these are acute or sudden terminal illness but again you may well find a pattern of lack of compassion in chronic, mental health or elderly care.

The phrase “the worried well” springs to mind. I never heard this until a couple of years ago when I presented to a group of GP’s and it shocked me that they referred to patients as “the worried well”, that group who are continuously in their surgery with health issues that may not be perceived by the GP as being important. I started to watch out for this lack of compassion and kindness or indifference while engaging in my own healthcare and that of my family and friends.

I started to think and consider how it was demonstrated or not during healthcare episodes. Now it would appear that traditionally, “the ideal of combining clinical competence with compassion has been a central feature of the practice of medicine throughout history” (Anandarajah & Roseman 2014) and yet there are so many instances where compassion is not evident.

I came across a blog by a medical student that really captures some of the key points that clinicians encounter.

“Dear Ms B,

We didn’t know each other well. You might recognise my face from rounds; I was the girl in the corner holding your numbers, looking at the ground or out the window. I occasionally asked you how you were, and you always told me the same thing – pain, so much pain. And I didn’t know what to do. I wanted to hold your hand, but my head always made excuses. I had to continue on the round, I had to be professional; I had to maintain my distance. But I always thought about you through the day. I thought about how I wanted to sit by your bed and hear your stories, capture your last days on earth, capture the rich life I’m sure you lived.

And you may never know this, but you made a difference to me. When I see another patient approaching their final moments, I will stop and talk. I’ll ask them how they are, if there’s anything they need, about their life, their children, their loved ones. I promise that I won’t just be a doctor; I’ll be someone who makes them feel valued. I’ll make them feel that their last moments are being remembered.

I’m sorry I didn’t do that for you…”

For me this piece demonstrates that we all make mistakes, that like us all, clinicians are not always right, that there is learning required and that improvements can happen and changes can make a difference.

This letter made me think of another encounter that happened to my family. My father has Crohn’s disease and COPD and he was in the ED of a hospital and he was sick, his breathing was difficult and he was very dehydrated. We were waiting for the doctor and I was looking through his chart, I noticed DNR on the front of his chart, and I immediately felt a sense of panic. As his main support in hospital I could not believe he had agreed not to be resuscitated, and I questioned him on it. He looked at me with an amazed face as if I had gone mad.  He told me that under all circumstances he wanted to be resuscitated, he has an amazing ability to fight back to beat his illness. When we asked about it later we were told that it was common, the norm, no one knew who had written it, no signatures, no agreement, just a decision made in isolation by some unknown person.  The reason I tell you this story is that decisions made like this show a real lack of compassion to me.  The failure to discuss this decision with the patient and the family is a failure to recognise the individual; it ignores the right of the patient to have their needs and wishes taken into account.

This is in stark contrast to the story in the UK recently where Sheila Marsh was granted her dying wish when the hospital she was in assisted her daughter in bringing her mother’s horse into see her so that she could say goodbye. The 77-year-old died hours after the emotional reunion.

“She took comfort out of it and it was a beautiful moment.”

(The Guardian,7 Nov 2014)

The main point for me about this is that we need to have conversations, even about the difficult things we would rather not talk.

This leads me to my next point about our purpose as clinicians and patients.

As patients we expect a lot from our clinicians, but I confess I have thought lately about the nightmare patient and I have come to the conclusion that I am one. I want my doctors at their best when I am at my worst; I demand their knowledge, their compassion, their empathy, their understanding. I want this equally balanced discursive relationship but what do I give them in return.

I pay my money for my visit and I expect them to be right after all they are the clinician and are earning a decent salary and I expect them to know, to fix, to mend but what do I give you I return for their advice and kindness.

I’ve thought about this a lot lately. I couldn’t help wondering why people decide to become clinicians, is it for the money? For the prestige? Because it is the family business? Or because they feel they could make a difference, because they have a purpose.

I thought about all the clinicians I’ve met over the years from all walks of life, rich-poor, family business-first time, egotistical-honest, change makers – followers, it’s funny as a researcher by trade I started to look at the various people I know, and I analysed the. However, during this process I had a look at the type of patient that I, my family and friends made.

At the end of the day I truly believe in the equal partnership between patients and clinicians but I questioned what I as a patient brought to the table. This is the a question I have struggled with for so long – I was there reluctantly after all, I didn’t ask to be sick did I? Or did I? This question kept troubling me because maybe I did, maybe I didn’t do the right things when I should have, maybe I wasn’t kind enough to myself when I should have been, maybe I didn’t take action soon enough, maybe I failed to take care of myself.

 So I guess the conclusion I came to is that as patients we need to try to help ourselves to be an equal in the partnership we need to take some of the responsibility. But equally clinicians need to see that they are only part of the relationship and they need to think about their purpose as a clinician, what they will bring to the table.

Now this leads me to another point that is often not discussed – guilt

I know I feel “guilty”, guilty that I am not feeling well, guilty that I am allowing it to take over my life, guilty I am not a good mother, guilty that I have failed as a wife, guilty that I don’t do more for my parents and aunt, guilty for not being better, a better me, a kinder more tolerant more understanding me.

I feel this every day, I constantly contemplate that I let this illness take over, that I didn’t fight it enough, that it won, and I lost. Everyday a part of me thinks about this, on the bad days this quote sums it up for me

“There is no difference to what I do every day, to those who commit suicide; I just chose the slower road” 

A year to save my life

In contrast on the good days I try to convince myself that a house is a home that I didn’t lose but choose to accept; to do the best within the resources I have.

Guilt is a theme that is discussed by patients within their closed groups. It’s not often a topic that is discussed by clinicians with their patients. The result can often be a patient in conflict with themselves, and this conflict can spill over and make them a difficult patient. Difficult patients offer clinicians an opportunity to increase the compassion they show. This will prevent clinicians feeling guilt in the way the previous blog outlined – after all who wants a life filled with regret?

My final point is about kindness, now I have spoken about guilt but recently I went to see a consultant and during the course of the consultation he asked about my depression. He wanted to know why I was refusing to take medication for my depression and to be honest I expected him to disagree with my logic but I was really surprised by his response. I explained to him that as a mother of three children living in constant pain meant that I often had to ask my children not to sit on me, not to hug me tightly, and to give me space. I also explained to him that I wanted to be able to feel life’s highs and low’s and that when I was on the medication it was just a plain boring monotonous level with no real tangible emotions. I told him I felt guilty about my lack of touch and that if I had a lack of feeling as well how could I be a real mother. He waited till I had finished and he said to me –are you kind to yourself? Just be kind to yourself. For me this was one of the most compassionate encounters I have ever had, this clinician listened to me, heard me, understood me, treated me – he was aware of his purpose and through this his compassion shone through.

I would like to reiterate what I said at the beginning that I have no solutions about spirituality or compassion in healthcare; these are just some of the questions that fill my mind, so in conclusion I suppose I just have a few points.

As a person and that’s all of us

1.      Be kind to yourself

2.      Stay true to who you are - Love yourself so that you can love others

3.      Live your life the best you can, given the resources the have - have no regrets

As a patient

1.      Help yourself so that others can help you

2.       Understand the humanity of doctors - Value their knowledge, their learning, their experience but know that they can make mistakes

3.      Show compassion but stay strong - garner your inner strength

As a caregiver

1.      Understand - Listen, hear, discuss, know, empathise

2.      Know and understand your purpose

3.      Care - Just care, give a damn, see the person not the illness. Know it may be you one day

I finish with a link to one of my favourite clips from the golden girls which I hope will act as a summary to my thoughts. Enjoy

https://www.youtube.com/watch?v=Zovd9eKvy8s