I think therefore I am? – A toast to absent friends and family

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Periods such as Christmas may be a stressful time for a lot of folks and this year things have once again been magnified by COVID.

There will be some people missing from Christmas Lunch/Dinner tables this year.

Unfortunately over the past 13 years my own family table has become increasingly spacious.

That’s the harsh reality of death and dying, it doesn’t take into account public holidays or religious occasions. Death’s calendar is not an Advent calendar and the countdown to the final day is not so clear-cut or accurate. We say to the families we work with in our inpatient units,  if your loved one can’t go home for Christmas please feel free to bring a bit of home into our hospice for Christmas.

For some people it will mean that Christmas,  New Years and other important milestones, might have to be brought forward as they may not be able to make it to the actual date, even though it is only a day away.

No presents can replace actual presence, but sometimes virtual is the best that we can do given the COVID-normal global situation we are living in.

Please take a moment to reflect on why we do, what we do in the practice of palliative care. It’s in order to help our fellow human beings. Decreasing suffering in all of its forms, not just physically, but emotionally, spiritually and familially/socially. That is what it is all about. We are here to support patients and their families through what may be some of their toughest times.

A continued work in progress.

Thank you all for reading.

Wishing y’all all the best for the festive season and a better 2022.

Bedside Lessons – 18b. A troubled young man Part 2

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His blood test results came back and were unusually good, the blast cells were reduced in numbers compared to on admission. Bloods were repeated weekly, and they continued to improve, to the point that there were no longer blast cells present at all. The Haematologist was contacted about this unexpected finding. She was surprised as his blood tests hinted at something that they had never been able to achieve before. Was this a remission?

A bone marrow biopsy was urgently organised, and revealed a pre-Christmas miracle – remission was confirmed. Somehow his disease had been controlled, by what we all did not know. Plans were hastily made for our patient to undergo a bone marrow transplant, with everyone’s hopes raised that it would lead to longer term control.

Our patient had mixed emotions, since he had become sick this was the first time that he had received good news, and he didn’t know how to handle it. He didn’t celebrate his remission as much as his family and clinicians did, as he couldn’t totally believe it. He was discharged home to his family’s rented home for Christmas together, with everyone hoping that a better year lay ahead.

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Bedside Lessons – 18a. A troubled young man Part 1

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A young man had been discharged home to an uncertain fate. His home was a converted garage, he had no family to support him, they were all located an eight hour flight away. He was reported to be in severe pain, due to his end-stage leukaemia. As he was 26 years old they had tried every treatment available but nothing worked. He refused to be admitted into the local hospital as he had been banned from there after previously assaulting a security guard during an admission. The referral said that he was under the ongoing care of a psychologist as he had “many issues” to deal with, including borderline personality traits, anxiety and anger control issues. We admitted him for symptom control, and possible end of life care.

From what we read we expected trouble, what arrived was a sick young man who looked as if he was about to die. Doubled over in pain from a grossly swollen spleen, he could barely speak to us, but was polite when he did so. We increased his pain medications generously and started high dose steroids to try to decrease his spleen swelling.

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Palace of Care – Middle-Earth Misgivings

Photo of Tawhai Falls by Luca Calderone on Unsplash

He had moved over to New Zealand because of the Lord of the Rings Trilogy. He had loved the scenery in those movies and had wanted his son to grow up in the country that the films had been made. They’d moved over six years ago, and had worked hard since arrival, building a better life for themselves.

He and his wife were high school sweethearts, they were also University classmates and after graduation they had married. Their son was now 10 years old. They had settled in Auckland and devoted a lot of time into growing their own demolition business.

Their idyll was smashed by the wrecking ball of illness when he suddenly had a seizure. He couldn’t remember what happened but it had been frightening for his wife and son. He regained consciousness in hospital and bad news was related to them. He had a mass in his brain. A scan of his body revealed a lung cancer. He didn’t smoke, and had no family history of cancer. Bad luck had brought cancer into his life, and it had spread aggressively to his liver, to the other lung, and into his brain causing the seizure. It ignored his behest, “You shall not pass!”

He talked about his regrets. He had moved thousands of miles away from his family in Asia, all the way to this country with the beautiful scenery. They had worked so hard that they never had time to leave Auckland, he had barely crossed the Auckland Harbour Bridge. He had never seen in person the spectacular vistas that had drawn him and his family over. He wished he had spent more time with his only son. He knew that he would be leaving his wife soon and she would have to raise their boy alone, that nothing could stop him from dying.

Agonised tears flowed like the waters of the Tawhai Falls, where Gollum was filmed catching a fish, another place he never had a chance to visit. His desolation much worse than any a dragon could’ve wrought.

Palace of Care – Flirting at the end of life

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Good morning we’re two of the hospice doctors, the pharmacist and of course you know your nurse.

I can tell that you are very clever people.

You are a very charming lady to be able to tell that, as your eyes are closed and you can’t hear us apart from when we shout in your ear.

My hearing aid is broken, I close my eyes so that I can listen more intently.

That’s what I’m doing too.

I felt more comfortable and at peace as soon as I arrived in this room. So I’m not sure if I have any pain or discomfort.

The male doctor looked puzzled as the patient moved her hands, grabbing onto his shoulders.

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Bedside Lessons – 12. Zero Degrees Kelvin

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Times of crisis can bring out the best or the worst in people. This is a tale from the dark side.

Before she became ill everything seemed to be perfect. Happily married to the love of her life, they were proud of their three adult children. The eldest already married and had produced the perfect grandchild. Second child a beautiful daughter who was talented, and about to enter the workforce. Youngest son, mummy’s boy, had started university and was on his way to doing something useful with his life. The family portrait was beautiful, three generations of the family all dressed in white shirts and blue denim jeans. What a beautiful family, united in their faith and religion. Stalwarts of the church, the example that the congregation all worked towards becoming. The golden family.

Illness arrived and caused major distress. The mother had always had alternative views to healthcare, had wanted naturally based treatments or no treatments at all. Unfortunately due to metastatic cancer she had to consider many different treatments, and many different medications to treat her symptoms. This soon became a torment for her, challenging her core beliefs. She tried to handle her pain as much as she could but it was so deep, so pervasive, so severe that even her iron will started to rust, to bend beyond it’s inherent structural integrity.

She was admitted in a pain crisis, having not slept for 10 days, woken by pain, exhausted with her family at their wit’s end as well. A highly distressing situation for them all. The facade of perfection had also started to crumble.

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Bedside Lessons – 11. Is healing possible at the end of life?

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She was unwell, and needed to come in for symptom control. She had been sick for many months but the pain had worsened to the point of intolerability. This was one tough lady, and she liked to show just how tough she was by being in your face. This is how I am, and who I am, and if you don’t like it, go to hell. That’s what her outer shell showed anyway, when she arrived she was feeling too unwell to put up her usual shields. She had always had trouble letting people in, and it took a bit of work in order for us to establish an useful rapport with her. Once we did we were able to help with her physical symptoms but no matter what we tried we could not penetrate her deep sadness and her feeling of being unloved.

She had moved thousands of miles from her birthplace, away from her blood family members. She had made a new life for herself over the 20 years that she had lived in New Zealand, but it was away from her family of origin. There seemed to be something from her past that kept on hurting her, even more than her end-stage cancer was able to. Physical pain we managed to get on top of, but her emotional pain we weren’t able to shift at all. Our counsellors, social workers and spiritual care advisor all tried their best but something was held back, which she could not share. Some things just hurt too much to be revealed, even to total strangers.

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Bedside Lessons – 10. Freedom to Choose

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Working in the community palliative care team I don’t meet in person most of the patients that are under our team’s care. I often have to provide advice for people that I have never met and have to count on my staff members’ assessments as the basis of knowledge of each patient. This is how our specialist support is provided from a distance, this allows me to have about 380 patients under my consultant remote control supervision at any time. Often I will provide advice which will be conveyed to the patient and their family doctor to be actioned.

This is the story of someone I never actually met but whom I provided advice on, an elderly Jewish lady who was a Holocaust survivor. I never found out which concentration camp she had lived through but somehow she had stayed alive when many had not. When she was young all control of her life had been taken away from her. Separated from her family whom she never saw again, made to endure hellish conditions, tattooed and emotionally scarred for life, she some how made it through her ordeal. She moved to New Zealand, married a local man, had children and grand-children and a rich and rewarding family life.

Recently her health had taken a turn for the worse and she was diagnosed with metastatic cancer with spread to her brain, causing headaches, and seizures. Despite having had radiotherapy treatment and high dose corticosteroid treatment her symptoms worsened. She was still clear in her thinking but was at risk of this deteriorating soon.

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I think therefore I am? – Clarification

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The following are my own personal professional views and do not represent those of my employer or of Palliverse in general.

I’m not interested in debating the pros and cons of assisted dying, everyone is entitled to their own opinions. In Nov 2020, 82% of eligible voters voted in the referendum, 65% of the voters supported the End Of Life Choice Act 2019. Aotearoa/NZ clearly stated it’s opinion last year, and in two days’ time it will become law.

I do not want my patients to be caught in the middle of two warring ideologies.

I am not here to argue, I am here to listen to my patient, I am here to learn from them. They are the expert when it comes to what they are going through and their suffering is defined by them, not by me.

I think that we in Hospice/Palliative Care need to build a bridge and get over ourselves. Our focus should be on our patients, not on ourselves.

Please treat patients with respect, they weren’t born yesterday, but they might die tomorrow.

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I think therefore I am? – It’s down to you now, you wanna be free?*

*From Cliff Richard’s We don’t talk anymore: https://www.musixmatch.com/lyrics/Cliff-Richard/We-Don-t-Talk-Anymore-1987-Digital-Remaster

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In Aotearoa/New Zealand the End of Life Choice Act 2019 will be enacted into law on Sunday 7th November 2021. Written in the voice of someone who is considering accessing assisted dying is a further conversation that they might have with NZ Hospice/Palliative Care, if only they would deign to listen.

The last time we talked I was not at my best, I was angry, upset and scared. I’ve had time to reflect and have looked at things from some other viewpoints. This is not an apology because I need you to see me as I am, I don’t want to have to pretend in front of you. I need you to understand how I feel, and what I am going through.

Thank you for not running away, like the others did. You said that you have similarly emotionally intense conversations all of the time, and that you have been trained to be able to handle them. You certainly used it to take the opportunity to get to know me better, and to explore my fears.

That being said,  I shouldn’t have sworn at you, that is not me. I am usually much better at controlling myself. My anger was not just directed at you, I’ve  been through many frustrating interactions during this illness journey, and it all just exploded the last time we met.

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