Author Archives: James

I think therefore I am? – Dropped

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Photo by Rod Long on Unsplash

I feel so lost, I feel so alone, aren’t I good enough for you? What did I do wrong? Why did you change so suddenly? I thought you’d always be there for me. I thought you’d have my back.

Many different people may be felt to be the other, this can have a racial basis, or be on a religious basis. People are labeled as other to justify treating them badly, and this is an unjust situation in this day and age. What other justifications are there for bad treatment of our fellow humans?

Palliative care patients may face stigmatisation for being closer to dying than most people. Oh well they’re going to die anyway, so why should we bother taking care of them? Just shove them in the corner and pull the curtain around them, and forget about them. Out of sight and out of mind. Not my problem mate. Who cares they’re dying anyway, not worth me expending any effort on them. I beg to differ, dying people deserve even more respect, as they are about to leave our planet, off to somewhere else, destination unknown. What will happen next? I don’t know.

It hurts to be rejected, to be pushed away, sometimes literally pushed away. I don’t want anything to do with you. Please leave, bad enough when you are trying to find a date, but when you are at the end of your life, how much more hurtful could that feel?

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Palace of Care – PI – Palliative Investigator

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Photo by N. on Unsplash

She was one of our community patients, a lady in her early forties who had been deteriorating over the past week. We were able to control her physical symptoms well but there was a deep underlying sadness deep inside. She was able to accept that she was dying, that she would be leaving behind her 18 year old daughter and her husband. That was not the cause of her upset, our counsellor went to see her at home to see if she could find out what was going on.

What was causing our patient so much anguish? She was well supported by her husband and daughter, and other family members were helping too but as our patient became less conscious her agitation and distress worsened. Was it an end of life delirium or was there something more going on? Her husband said that she was still looking for Mary.

Mary? Who is Mary?

Our daughter.

But your daughter is not called Mary.

Our older daughter.

Oh we didn’t know you had another daughter.

She was stillborn when we had her 20 years ago. We were young and didn’t have enough money to properly bury her. We only had a few hours with her before they took her away. We never found out where she was buried. We looked for the first two years but our English wasn’t as good back then, we had just moved over from the Islands. We never found her, but we’ve always missed her. Especially my wife.

There was a mystery to be solved, I had to find out where baby Mary was buried, with only her full name and date of death. I had no idea how to start the search, so I asked around my colleagues. Thanks to everyone who suggested that I contact the local council. A quick search of their website found a section where you can search for burial locations online yourself. This did not yield any results, but led me to another section of the website that allowed me to send a query email.

A few days later a real human answered, and suggested that I email someone else. Two days later I was sent a reply with a picture of a map of the cemetery with a highlighted area within which the baby had been buried. I printed out the map and our counsellor rushed out to deliver the information package to the couple. Time was of the essence as our patient was deteriorating rapidly and was in danger of losing consciousness and clarity.

Two days later our patient died peacefully at home with her gathered family, her distress had settled down once she was told that Mary had been found. The bereaved husband’s were red and swollen, but he smiled when he told us that his wife knew where to find their long-lost baby and could pick her up on their way to heaven.

I think therefore I am? – Holding Hands

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Photo by National Cancer Institute on Unsplash

There is nothing wrong with holding hands in hospice. The problem is when that is the only treatment that you have to offer.

When modern hospice started there may have been less that could be done for patients thus holding hands may have had to be one of the only treatments available. If they couldn’t control your symptoms then at least you didn’t have to die alone and having someone hold your hand might provide some comfort.

Hospices may have started off as places where semi-retired doctors, nurses and others might go to work when they were wanting an easy job at the end of their careers but modern day hospice requires staff who are willing to continue learning, to grow their skills and knowledge as palliative care situations have become increasingly complex situations. Due to advances in medical treatments people are living longer than they ever have before. The silver tsunami is the greatest achievement of modern medicine, people are able to live to old ages.

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I think therefore I am? – Hearts and Minds

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Photo by Jon Tyson on Unsplash

To do palliative care and hospice well your heart does need to be in it. People can easily tell if you are not really there. It doesn’t have to be as obvious as someone who won’t sit down, or who constantly checks the time on their watch. Do you have somewhere more important to be at the moment, than in my room? Something more important that needs to be done than listening to me?

If someone’s heart isn’t really in it people can tell right away. The lack of attention that is paid to simple things. So we do want people to be engaged to actually care for people. It does need to be done professionally, with kindness and respect. People need to have firm boundaries that they do not cross. It’s about protecting yourself and also the person that you are working with. You can be friendly but cannot be their friend. You can be caring but it must be in a professional manner. We are guests in their lives, and we do not want to disrupt pre-existing relationships.

We are involved possibly in the final chapter of someone’s book of life. It is not about us, but about them. They are the stars of their own show, of their own movie, of their own stories. We are only extras, or play a tiny bit part. We may have only a few lines to say, and we will try to say them well. The direction of the story needs to be guided by the person going through it all. We would not be in the same room as them if they were not sick, if they did not need the care that we can provide. We must never forget that, that they are not here because of us, but that we are all here because of them. The patient needs to be at the centre of everything that we do, not their family members or friends but the actual person themselves.

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PIANO lessons

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Realisation

Photo by Anastasia Kalinkina on Unsplash

I arrived around the same time as the Eat My Lunch delivery arrived. This was a local social enterprise which had been set up and the concept was that if you bought a lunch, the company would provide a lunch to a student in need. The company had delivered some school lunches to be distributed to the students. From one of the other network attendees I learnt that the school also provided breakfast for the kids as well as lunch. The lady said that she helped with the breakfast serving at least once a week. She admitted to initially being against the idea, that she had believed that children’s nutrition was supposed to be under the remit of their parents. Over time she came to the realisation that due to personal circumstances this was not always possible, and that providing children with one or two meals a day really enhanced their health, and their learning ability. Since then she happily reported to duty each week, and sometimes even filled in shifts for other people.

Disconnection

Photo by Erik Mclean on Unsplash

A family had come back recently from the Islands, the husband was unwell with metastatic cancer. The teacher asked if the patient was under hospice. I thought that service was only for Palagi – The foreigner – the white people. Despite us having been the hospice for the local area for the past 35+ years local people still did not know that we were available to help our local community members regardless of who they are. A gap that we still haven’t been able to bridge despite many years of trying to connect. What we had done over the past three decades just wasn’t working. We need to try something different. The same old, same old just doesn’t cut it any more. What else can we do to make the connection? That we are here for people just like you. We have been trying to recruit to reflect our local demographic. For our staff to look like our community, and we are hiring for inclusion to encourage diversity of thought at all levels of our organisation. People like us look after people like you, we are one and the same.

Traumatisation

Photo by Andre Benz on Unsplash

The family had lost their father and husband due to a brutal act of violence at the local train station. His life was cruelly stolen from them, and the grief was too much for them to handle. They were lost, set adrift in a cruel sea of grief, with no land in sight, no hope of rescue. Every week they would visit the site of his death, the mother and the children, would weep and could not move on with their lives. This important local community hub held onto their agony with an iron grip. A local amenity that could not be avoided, became not just a place to catch a bus or a train, but a deva-station. Transporting them to a painful past, a tormented present and an uncertain future.

Palace of Care – Accelerating towards the finish line

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Photo by Daniel Lloyd Blunk-Fernández on Unsplash

The poor old lady had been through a lot in recent years. Cancer had treated her harshly, and had spread through major organ systems, her liver, lung, and most of the bones in her body. A cruel disease that robbed her of her independence, and dignity. The years that she had the cancer had been relentless, multiple lines of treatment including chemotherapy, radiotherapy, targeted therapy. Despite all of them the cancer continued to progress, to cause havoc, and to ravage her body, and eventually her mind.

The past month had been the worst time of all. Her final decline started with a fall, it was not clear why she fell but she ended up fracturing her wrist. A painful injury that caused her to cry in agony. Her lower arm was placed in a cast for comfort and to give it the best chance to heal. Three days later she fell again, with her other hand outstretched, causing another wrist fracture. Two forearms were now encased by fibre-glass casts. This rendered her unable to wipe her bottom or wash herself. Increasingly dependent she had trouble feeding herself, the casts were of the light weight sort, but when your illness has stolen away precious muscle, the additional weight made brushing her teeth impossible.

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I think therefore I am? – Yearning for connection

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Photo by Toa Heftiba on Unsplash

What this palliative care doctor thinks:

It’s not just about language, that’s why Google translate can’t replace human interpreters at the moment. It might be able to translate the words literally from one language to another but it doesn’t yet have the cultural context of where the words came from. The history of the language has not been programmed into it. Take English for example a lot of the words we use are derived from French and other Latin-based languages. You don’t ask for sheep meat, you ask for mutton from the French mouton. Similarly beef, not cow meat, from the French boeuf. A translator program is not the same as an interpreter program. Google Interpret would have to be much more sophisticated and would need cultural programming as well as linguistic programming.

A person may be speaking Chinese, but they are also living Chinese. The food that they eat, the clothes that they wear. Rituals that they follow to celebrate life, and how they deal with death and dying are the missing parts of a person’s identity that cannot be easily translated.
The most important tool I have as a palliative care doctor is my ability to communicate. I make a point of greeting my patients in their native language as much as possible. My accented version of their language is my attempt at providing them with a hint of familiarity. In the area I work in people come from all over the world, from lots of different cultures, with over 200 different languages spoken in our area. I certainly do not know all the greetings that are available but a quick Google search can provide me with at least a few words of greeting. A little demonstration of respect that I have made the effort to try to connect with another human being. It may have taken me ten seconds to type in my query but it can often bring a smile to a weary sufferer, whose illness has taken over their body. Someone for whom English may be a second or third language. A little snippet of home, can make a real difference.

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Palace of Care – Smiley

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Photo by Jacob Vizek on Unsplash

I had finally completed my examinations and could start my specialist training. I had been drawn to both Medical Oncology and Palliative Medicine from a relatively young age and I could try working in each speciality for six months before deciding which one I wanted to pursue in the long-term.

One morning during my six months working in Medical Oncology I was in clinic with an Oncologist who I considered to be my mentor. Standard practice was for me to see the patient first, then present the case to my mentor, who would then come and see the patient.

A big friendly smile in the form of a slim 26 year old man walked in with his pregnant partner of similar age. They were accompanied by his cousin who was in his 40s. Smiley’s story was a sad one and had begun eight weeks prior to his clinic appointment. Life was good, he had a steady income from a job he enjoyed. In the weekends he loved playing rugby in the local team. He and his partner had been together for five years and were going to take the next step. Baby was on the way, and was due in five months’ time. Everything was going well until it wasn’t.

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Palace of Care – The T-Shirt

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Photo by Toa Heftiba on Unsplash

My consultant asked the young man, “What would you like us to call you?”

He answered, “Your highness.”

“Okay your highness, how have you been?”

That was an entertaining start to the therapeutic relationship which put everyone at ease, and allowed for an air of playfulness to come into the clinical encounter. The patient was in his late thirties and had come into hospital with severe pain. It was likely due to cancer metastases, and he was still recovering from his last cycle of chemotherapy when we visited him.

He talked about what was most important to him, spending time with his young son. This was whilst he was carefully mixing flax seed oil into a serving of yoghurt, as part of a cancer treatment diet that he was trying. He would try anything to keep himself going and wanted to spend as much time with his son as possible.

Despite all the treatments that he had received the cancer continued to progress causing ever more problems. The side-effects of the aggressive treatment were severe and included the loss of his hair. He said that he had always had good hair, and it was one of his personal trademarks since he was a teenager. Now he didn’t mind losing his hair, and he had even designed a t-shirt for the sake of entertaining himself and those who looked after him.

He loosened his dressing gown and revealed his creation. In bold font it simply said, “Hair by Chemo.”

Palace of Care – The End of the Race

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Photo by Cedrik Wesche on Unsplash

She had always been a strong lady, throughout her whole life. She may have done things slowly but always in a methodical fashion, and if it was done by her, it was done well. As it was in life, so it was in death.

Anyone else would likely have died a week ago, but she was holding on as she had too much to live for. She worried about her husband, physically he still looked like he had for the past twenty years but his ability to think and remember had started fading years ago. She had looked after him well, and had to increase her efforts since the dementia started to steal him away from her. He was still polite and kindly, but at times he would forget who she was, and would forget who he was too.

She had been told that the grandchildren were on their way back from overseas, she wasn’t able to acknowledge this. She was mostly unconscious, but would occasionally stir when being turned or when fed small spoonfuls of water. This was done with a special teaspoon which had a hollow mesh structure and the handle served as a straw.

The middle grandchild would arrive that evening, and she would do her best to hold on despite apnoeas of up to 15 seconds. The grandchild arrived and required Rapid Antigen Testing before we would let them in, a negative test would mean it was okay. The swab was taken and processed, the timer was set, 15 minutes before the test could be verified. Time drags on when you are waiting for something.

Tick, tock, tick tock.

A negative RAT test allowed the grandchild to reunite with their grandmother.

Phew….

Our patient died six hours after her reunion with her grandchild.

The eldest grandchild was still making their way back from half the world away and arrived 14 hours after our patient’s death.

RIP Strong Little Queen