Author Archives: James

Palace of Care – Please Keep Him Alive

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Photo by Ricky Kharawala on Unsplash

I’m very worried about your father, I think he only has a short amount of time left.

The doctor yesterday said he might only have one to two weeks left to live.

That would have been right yesterday, but your father’s condition got worse overnight. He had a lot of pain, agitation and distress. I am worried that he might die possibly within hours to days.

Dying? You think he is dying?

Yes. You’ve noticed his breathing becomes faster, then it slows right down, and then there are gaps in his breathing. This is what we see when people are dying.

Is there anything that you can do to keep him alive? His son is on his way from overseas, he’ll be here by this evening. Can you give him food or fluids?

He’s unable to swallow anything. If we fed him it would make him choke. The safest way to give him fluids is to keep his mouth moist.

Could you put in a line, and give him fluids and nutrition?

We don’t do that as his body is too unwell to cope with food or fluids. Extra fluids could lead to painful swellings, or worsen his breathing. His body wouldn’t be able to digest food even if we put a tube through his nose, down his throat and into his stomach. He wouldn’t be able to digest the food. This might cause vomiting, and could lead to diarrhoea. We don’t want to make his tough situation even worse.

How about Oxygen? Could that help his breathing?

I’m not sure. We can check his oxygen saturation level. If it is low he might get some benefit from having oxygen.

Is there anything else you can do to keep him alive?

We are at the limit of what humans can do, it is now up to higher powers than us. We can make him comfortable though.

Will it help us to wake him up when he is sleeping?

Probably not, he is too unwell. He knows his son is flying over. He will try to hang on. I’m worried that they might not be able to see each other again.

He can hear and understand what you are saying. He will try to respond to you but he probably won’t be able to. We want to look after him well and get him and you all through this.

Thank you, doctor.

You’re welcome. Please take care and rest when you can.

I think therefore I am? – What’s in a word?

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Photo by Alexander Hanssen on Unsplash

Today I was asked the difference between the terms Palliative Care and End of Life Care. End-of-life care is for the last days of life and can be considered the final kind of palliative care that people will receive. Whereas palliative care is for people in their last 12 months of life or possibly longer. A person may have palliative care needs at any time during this period. They might have symptom control issues needing assistance. Common physical issues are pain, nausea, breathlessness, and agitation but non-physical issues can cause just as much if not more morbidity.

Using the lens of Aotearoa New Zealand’s Te Whare Tapa Wha as well as Tinana/Physical we look at Hinengaro/Emotional, Wairua/Spiritual, and Whanau/Familial/Social. People may be suffering from problems on the non-physical sides of the house.

What is palliative care? Care is provided to patients in order to decrease suffering. To calm down symptoms affecting the whole person be they physical or non-physical. It is hard to divide people up into the four sides of the house as everything is interlinked within the same person. You can’t separate the mind from the body from the spirit from the community.

Fear of the unknown is what can occur when it comes to Hospice. People may have a certain idea of what hospice is. It might be a frightening thought for them, one they hope they will never have need of. Death is inevitable and reminds us that it will come to us no matter what station in life we have held in the past. What we do in the here and now is what is most important. Will there be a tomorrow at all? We don’t have all of the answers at all.

People in the communities we serve don’t know us well. Fear of the unknown is a real thing, that hampers access to care. How to break those through the fear barrier? Knowledge is power, empowerment to make your own decisions. To do what is right for you and your loved ones. While you are still well enough to make decisions we will check with you about what you would want to happen or not want to happen to yourself.

I think therefore I am? – Life Force

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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.

Persistence.

Grit.

Life.

Death.

Palace of Care – The Butterfly

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Photo by Sonika Agarwal on Unsplash

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.

I think therefore I am? – I don’t mind being wrong

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“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 think therefore I am? – Speaking from the gut

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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.

Any questions?

I think therefore I am? – Palliative Care Equations

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Low albumin level + Poor organ function + Decreased appetite = Limited time left to live

Worsening balance (Physical + Biochemical + Cognitive) = Decreasing life balance

Family distress = Patient distress X Number of family members

Abdominal pain + Nausea + Vomiting + No Farts + No Poo = Bowel Obstruction

Unfinished business X Relationship dysfunction X Regrets = Complicated grief

Safety + Trust + Compassion + Trained professionals = Therapeutic Partnership

Severe symptoms/Good Palliative Care = Patient comfort

Engagement (Clinician + Management) = Good Hospice Team

Suffering witnessed + Action compelled = Compassionate care provided

Apnoeas + Thready pulse + Cold hands + No response = Active Dying

No breaths + No pulses + No responses + No eye reflexes = Dead

Guest Post – Rishika Iyer 5th Year Medical Student – Addressing the empathy in the room: a poem

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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.

Palace of Care – Life Goes On

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Photo by Nick Fewings on Unsplash

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.

I am not defeated.

I am courage.

I am will.

I will persist.

I am alive.

Palace of Care – Everyone’s Crying

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This hospice place is nicer than the hospital.

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.

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