Of the words most used in medical school, Empathy is number one. Em-pa-thy, they recite from the dictionary. Diligently, we write it down. From the German, einfühlung, or ‘in feeling’, noun: ‘the ability to understand another person’s feelings, experience, and so on’
And I wonder, Why they fail to teach us of the Germans, Who felt the need to combine ein with fühlung and give it meaning. What 19th century experiences must have underpinned such a decision? I wonder, Who are these people that sense deeply, perceive freely? Where can I find a dictionary of their stories?
Because in the end, A ‘so on’ isn’t something we can rote learn. It gathers cobwebs inside a brain that is unable to sit still. Between tutorials and theatre lists and post-acute Ward rounds, We forget that true empathy surpasses what we write down.
So I thank you, From the bottom of a heart that’s still growing, For bringing life to a phrase that German scholars gave meaning. Once elusive, empathy runs through the very veins of this establishment, And I create my own dictionary of stories that exemplify this.
Rishika joined our hospice team for the past five weeks. She generously wrote this poem reflecting on what she had learned during her time with us. Thank you Rishika, we look forward to reading more of your writing in the future.
How would it feel to be told that you are going to die?
That you will not be able to leave the ICU.
That you will not be able to leave the hospital.
That you will never be able to return home.
You receive a call saying that you will die from your illness within three months.
You believe them and prepare for death. You organise your own funeral and your burial plot.
You finally accept your situation, that you are dying.
Then it doesn’t happen.
Again and again and again.
What do you do now?
You’ve beaten the odds over and over. By many weeks, months, and years.
You don’t know what to believe any more. You don’t know who to believe any more.
It could all be taken away at any time. Do you dare to dream? Do you dare to hope?
Somehow through all the disasters you carry on, something keeps you going. Some inner strength. Some kind of fire keeps on burning inside. Some light that refuses to dim. A strong spirit coupled with too much to live for. A fervent wish to meet the next generation. To be part of their life. To grab onto whatever precious bonus periods that life may have to offer.
It’s noisy in the hospital. People rush around. They only let me stay a little bit.
What’s going on?
Something is wrong.
Dad’s crying again. Louder this time.
Why are my Uncles and Aunties crying too?
Why is Poppa crying? I’ve never seen him cry before. Nanna is crying too.
Mama, why is everyone crying?
Mama, wake up. Mama. Wake up.
They all look sad. They cry real loud. Like me when I hurt my big toe.
Was it something I did?
Makes me want to cry too.
One of those nice ladies has come in to check on Mama.
They all look different but they all wear blue. Mama called them nurses.
They all are nice to me.
They’re all saying that Mama is gone, but she’s right there in front of me.
Silly grown-ups. Can’t they see she’s still in bed? Dad’s still holding her hand.
Okay, Aunty. I’ll go for a walk with you to the shop.
Hey, there’s a lady dressed like a clown. Clothes. Lots of colours, like a rainbow. The long hair is colourful too. Mama would laugh at the Lady Clown.
Why is there a Clown in the hospice? I want to talk to her.
For those of us working in Palliative Care, we must remind ourselves that we are only briefly there in our patients’ lives. We might only appear briefly in the final chapters if it was a book. We have a small part to play in a person’s life as a whole. We provide episodes of care which usually end with the death of our patient. Mostly this is also the end of our relationship with the patient’s loved ones. We make our decisions, offer our suggestions and give our advice before leaving for the day. Our involvement may be as short as hours to days, sometimes weeks to months, but it is a small period.
The patient and their loved ones have to live with their decisions for the rest of their lives. In the case of the patient, only a short time. For their family much longer. They have to do what is right for them. To make sure they have no regrets. To make sure that everything has been tried to keep someone alive.
Even after 15 years of full-time Palliative Care work it is still hard to step aside and let someone do something that you disagree with. You are confident you can control their severe symptoms, to provide comfort, but the patient and/or family are not wanting to buy what you are selling.
No one likes being rejected. To have their best attempts at helping not accepted. For alternatives to be chosen instead. It is hard to witness suffering and not do anything about it.
I want something else. I want to follow someone else’s recommendations.
I want to help you. I really want to help you. Please let me help you.
No. Thank you. I need to do this. We need to do this.
Don’t take it personally. You hardly even exist in their lives. It’s not about you. It’s about them, and what they want to do with what little remains of their life. They want to call the shots. To take control. Even if the only control they can take is a refusal of treatment. They are making one of the few choices they have left. It’s not about you. It’s about them. What is important to them? What is right for them?
I’ll get out of your way then.
It’s not like that.
Yes, it is. I’m getting in your way. I’m holding you up from doing what you need to do. You know where to find me if you change your mind.
It was important to keep on side with them, to show that we would listen and allow them to take part in the decision-making. That we meant what we said. You are the driver, not me.
Our patient might’ve suffered more than they had to but it was the right thing to do for them and their loved ones. They did what they needed to do. So they could live with their decisions, for the rest of their lives.
In the approach to the finish line, there is an acceleration. Bad things start happening faster and faster. One physiological insult after another. The body just can’t keep up with the relentless series of assaults. Nature is trying to take someone out. Symptoms that are already present worsen. New symptoms develop and cause more suffering. There is only so much a person can take, no matter how strong a fighter they are. The mind and spirit may still be strong, but the flesh has become weak.
The family urge them to hang on. They are trying their best but there is little to hold on with. They are slipping away from our world. They are dying and there is nothing humans can do to stop it from happening. It is up to higher powers now, it is out of our hands. We can make people more comfortable but we can’t save every life. There’s just too much going on, too much going wrong.
I’m worried that time has become really short. There might only be hours to short days left to live. I’m worried they are suffering, that they are really struggling. We want to make them as comfortable as possible. Medication changes could make them more comfortable. The main side effect is sleepiness. At this stage of things, even if we took away all of the medications they would still be sleepy but would be very distressed. If they are distressed this will make you all distressed.
I’m sorry this is happening. I need you to know what is happening and what is going to happen. I can’t let there be any surprises between us. Yes, please talk amongst yourselves. I’m happy to come back later to discuss this further. I just want you to know that we are looking out for their best interests and that their comfort is our top priority. We’re going to get them through this, we’re going to get you all through this. Please let us know if you need anything.
“I’m just checking in with you. How are you today?”
“I’m too tired to fight today.”
“Me too, you really made me work hard yesterday.”
“I would really like a massage. Healthcare has under-utilised the benefits of therapeutic massage.”
“I’d agree with that. It is one of the alternative therapies that has been proven to make people feel better. A lot of the Pasifika cultures use massage as part of their healthcare systems.”
Nod.
“Us humans require physical contact. We don’t hug each other enough.”
His long arms tried to stretch outwards, but they could only move centimetres towards me due to weakness.
My arms went around what felt like a skeleton’s back. Sarcopenia is the medical term for the muscle wasting I felt.
A gentle embrace was shared. He was too weak to hug me tighter. I didn’t want to hurt him.
Followed by a firm handshake, our left hands surrounding each others’ right hands. All four hands shaking together.
The smiles in our eyes met each other. Retinae looked directly at retinae. A human connection was maintained but it was destined to be disconnected soon.
Our kindred bedside manner DNA started to unwind. One strand would come to an end soon, whilst the other would continue on.
He thanked me for the care provided.
I thanked him for his time and for the fun memories of our playing and joking together.
We shared a smile before we waved ‘see you later’ to each other.
Life can be full of uncertainty and the same is true for dying. When will it occur? The doctors don’t really know, they can only give their best guess. The ones who give an exact time are likely out of their depth and answer with false confidence. Three weeks. Three days. Three hours. Medical science is not that exact yet. Maybe someday there will be a test that will tell people exactly how long they have left to live. Not available yet.
Sometimes people will say their goodbyes too soon. They carefully choose their words as it might be the last time they ever see each other again. Could it be the final farewell? Yes, it could be. We’d better say what we really need to say just in case it is the last chance we ever get. A final chance to connect with a loved one. A final chance to heal or to hurt. A final chance to say what a person means to you. A chance to wish them all the best for the future you won’t be a part of. A final chance to share one last rendition of a long-standing private joke. One last hug. At least you had a chance to see them before it was too late. Not everyone makes it in time, which has been particularly painful in these COVID-affected years. So close, but yet so far. So much suffering.
Why do we leave things unsaid until we know a person is dying? Could we have told them the truth earlier when we were both fit and healthy? All of us who live will at some stage die. It could happen to any of us, not everyone gets the chance to say goodbye to the important people in their lives. Sudden deaths can happen without any warning. Accidents happen all of the time through no fault of anyone. What would you regret not telling someone today, if you were to die tomorrow? Death could happen to any one of us, at any time.
If you both can still see each other the next day, consider it a bonus.
I hadn’t seen the pirate for two days. What would he be like now? Would he be more unwell? Would he still be able to talk to me? Would we get another chance to share a few laughs?
I knocked on the door and loudly said, “Good morning.”
I peered around the corner and he did look different.
Covering his left eye was a piece of gauze and covering the gauze was a black pirate-style eyepatch which his family had brought him. He looked to have lost weight, it had only been 48 hours since I had last seen him. What was that in his hand?
He was holding onto something with a shiny handle. It had grooves in it to make it more ergonomic and so it would fit in the hand well. The hilt piece was curved both upwards and downwards. A skull and crossbones adorned the hilt. My eyes followed the curve of the blade upwards. He beckoned me towards him with his cutlass, he wanted to fight.
He instructed me to prepare my weapon.
I motioned to one of my trusty assistants who rushed out of the room to bring me my weapon of choice.
Within seconds my bright yellow electric bug zapping tennis racquet was in my hand.
En Garde!
We slashed at each other, in slow motion.
I tried to hit him, he parried my blows.
He tried to hit me, and I dove out of the way.
We kept fighting, neither of us wanting to give in.
Seconds felt like minutes, the minutes felt like hours.
Finally, he feinted left and with a deft flick of his wrist, I was disarmed.
My yellow racquet clattered on the floor. Useless. I was done for.
His sword sliced upwards towards my head, and I was given my second haircut of the New Year.
Following our mighty battle he complained of a sore throat.
My differential diagnosis – sore throat caused by too much laughing.
I wanted to confirm my suspicions and examined his throat.
palliverse.com 