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
