Some people stay alive because of sheer willpower alone. Despite having no reserves left they keep on going. They draw energy from a place that is beyond scientific explanation. A failing body is somehow maintained by the force of determination. Mind over matter can maintain organ function. Their physicality has become frail but their mentality keeps on pushing them along. They try their best to stay alive, they have too much to live for. They can’t let go.
I can’t leave because there’s too much love in the room keeping me here, and I don’t really want to go, but I have to.
The body has shut down but the mind remains active, and it can feel trapped. No escape from the prison of their own body. They might already have had enough and are ready to go, but they don’t know how to let go. Their mind and body are so used to fighting, it had become their default mode of existence. To continue struggling on and on., not knowing how to stop.
We never met the social butterfly of the workplace who made an effort to make everyone feel welcome and included. The young lady who made everyone at work laugh. The person who befriended everyone and even their partners.
Life can be too unfair for some people. A room full of flowers, teddy bears and heartfelt messages. The love in the room was palpable. The care they provided to our patient and to each other was beautiful.
We only met her when she was critically unwell. When the illness and medication side effects had made it too hard for her to be fully herself. In so much pain that she couldn’t do the things she wanted to. Her body too distressed, making everything a struggle. Moving around the room became exhausting for her.
By the time she came to stay with us the talented artist was too fatigued to produce any artwork. The music fan with no favourite genre lacked energy to listen to her favourite songs. Not enough breath to sing along with.
Cancer can be a cruel illness that takes too much away. Potential snuffed out with too much finality. Opportunities taken away much too early. She never had a chance to grow old. She never had a chance to explore the world. Taken away in her prime, she has missed out on too much.
Some cases are just so much sadder than others. We have to look after ourselves just that little bit more. We have to be proactive in looking out for each other even more. The team looks after people well but we need to look after each other as well.
We can hardly imagine what it feels like for the parents to lose their daughter. For the siblings to lose a sister. For the grandparents to lose a grandchild. We try to understand but we don’t really know what it feels like. Taken away too soon. Our patient died and a butterfly was affixed to the door of her room.
“How long have they got left to live?” This is a question I am asked at least once a week. There is no way I can give a completely accurate answer but I try my best to give an approximate time period. Months to years. Weeks to months. Days to weeks. Hours to days. These are the standard replies I give, for the weather forecast they have asked me for.
Over the years I have had a lot of practice. My educated best guesses have come closer thanks to lived experience. I am often wrong as there are too many things that need to be included in the considerations.
“Should I call the loved ones in?”
Better they come and visit too early, than too late. See them while they are still able to talk and interact.
I don’t know what will happen tomorrow, let alone next week.
I will try to give you as much warning as possible, but sometime I may be caught by surprise myself. The final deterioration may not announce its arrival. It might sneak up on everyone, including the person themselves.
I’ll keep on trying my best, but I don’t mind being wrong when it comes to prognostication.
I often joke about my increased use of gut instinct over the last ten years as my gut has gotten bigger. The truth is I have been using more intuition. Sometimes ideas just feel right. I need to tune into the person that I am assessing. I need to use empathy to try and discover what makes them tick. What drives them? What is important to them? What keeps them going despite insurmountable odds? Who are they? What goals do they still have, even at the end of their life?
The practice of mindfulness meditation has helped me to answer some of the questions. It has helped me in trying to obtain a ‘read’ of the people I am interacting with. It allows me to meet them as they want to be met. On their terms, using language and concepts they can understand. I will listen to you. I will be guided by you. I am here to help, in a way that you want to be helped. I am here to learn from you because you are the expert when it comes to yourself, not me.
I know my place. I am not your boss. I am not your parent. I may be friendly but I am not your friend. I need to maintain my professional distance in order to remain objective in the care I provide. I need to be able to connect with you in order for us to understand and work with each other. We will come up with a bespoke plan together. Any decisions made will be shared between us. A true therapeutic partnership is what I am trying to grow between us. It will take work on both sides in order to make it happen.
I promise you that I will try my best to do right by you. I wish I could do more. Together we can work together to try to improve your quality of life. I will try to look after you as a whole person. You are so much more than just a physical body. There is a story about you and I am here to hear you tell your story. I will listen actively and allow you to talk without interruption. I’ll be your guide for what may be your final journey.
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.
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