Palace of Care – Sold

Photo by Fang-Wei Lin on Unsplash

The patient didn’t want to let go. Their loved ones couldn’t let go either. They all knew what was happening. The patient was dying. The loved ones were crying. The clinicians listened and were guided by what the patient and their family wanted. It was difficult to let them have their way, but it was important for them to exert the only control they had on the situation.

As Palliative Care clinicians we are trained to be compassionate, to want to do something to try to ease another’s suffering. It’s terrible knowing you can make someone more comfortable but you are not allowed to act. It can make you feel powerless and useless. Possibly what the patient and their family have felt throughout their illness experience.

I arrived in the morning and I looked at the little table in our waiting area. I was hoping there would be a candle lit, indicating the death of a patient. There was no candle. The nurses reported that our patient had a rough night. No sleep with lots of distress, the family also distressed and sleepless.

On examination, I saw distress, confusion, discomfort and terror writ large in the patient’s eyes. They seemed to stare through us, into another plane of existence. Concern was etched into the tear-lined faces of the gathered family. They asked to speak to our team in a few minutes time. Their night shift needed to check in with their morning shift.

“I’m sorry but we just wanted to spend as much time as possible with them.”

“There’s no need to apologise, we understand, and you don’t need to explain. You were trying to do your best to hold on to each other. I’m sorry things keep on changing.”

“Please do what you need to. Too much suffering. We can’t bear it.”

“Do you trust us?”

“Yes, please make them comfortable.”

“We’ll start some medications to calm things down, to decrease the distress. We’ll come back in four hours time to check for effect. If it hasn’t worked we will adjust the doses. They’re likely to become sleepy because they are exhausted and haven’t slept for days. They might not be able to wake up again.”

“How much time is left?”

“It might be days at the most, but it is likely much, much shorter. They’re too unwell and could die at anytime. We’re going to get you all through this.”

My team prescribed the medications and I took them for a quick break.

Later in the day, everyone sighed in relief after the last breath was taken.

One of the toughest cases in my fifteen years of full-time Palliative Care.

Palace of Care – I’m Not Telling You What To Do

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I was asked to speak to the patient’s son. His mother was unwell and deteriorating. Her son was not medically trained but was forthright in his opinions. He thought his mother had simple constipation and all she needed was simple laxatives. He was more than assertive in his requests for treatment, taking a more directional approach.

“Look, I’m not telling you what to do, but…”

“Actually, you are telling me what to do. I need to tell you what I need to do for your mother. She’s very unwell, and is not just constipation going on. I think she has a bowel obstruction caused by the cancer. It is causing severe pain, nausea and vomiting. I am very worried about her. I have seen her condition worsening every day. I don’t think she is going to get better.”

“You mean she won’t recover?”

“She is trying her best to do so, but I think she probably won’t be able to. She’s too unwell.”

“What can you do for her?”

“We can try to make her more comfortable. We’re going to have to use injectable medications as I’m worried she won’t be able to swallow soon. Do you have any questions?”

“No, please do your best for my mother. She raised us all, and she always worked so hard. We wouldn’t be here if it wasn’t for her. Please look after her. “

“We will.”

Palace of Care – You Son of an Itch

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My patient had been itchy for months. This symptom preceded their cancer diagnosis. Widespread cancer to multiple organs and bones. Normal kidney function, slightly deranged liver function tests. Troubled by pain and nausea but these had been brought under control with medications in a syringe driver. It was the itch which caused the most suffering. Constant irritation of the skin, led to multiple skin wounds. The patient’s finger nails had dried up blood accumulated under each nail. Sleep had been broken by itch. Being in bed under sheets and blankets led to heating up and worsened itch.

On examination the patient’s skin was covered in scratch marks with many healing scabs all over the body. No limb was spared, back and front were no different. Nose was scratched, as was forehead, as was chin. Watching the patient scratching made everyone in the room feel itchy as well. What could we do? In hospital they had already tried many treatments with no success. The patient was exhausted but couldn’t relax to sleep because of the itch.

I ended up throwing the medication book at them Moisturising anti-itch creams with added Menthol were ordered in. I wanted to cover any nerve-related component of itch with increased nerve pain relief medication, Pregabalin. They were already on H1-Histamine blockers. Covering the other H2- Histamine receptor might be helpful. The patient and their family were keen to try anything on offer. Mirtazapine was started to help with the itch and hopefully a better nights sleep as a side-effect.

The next morning my patient was reported to have slept well. The itch was much improved for the first time in months. Which medication had helped? I wasn’t sure but I didn’t want to change anything as something had worked.

A small victory in hospice/palliative care? I’ll take whatever I can get.

Bedside Lessons – 15. The Elite Soldier Part 1

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If he had been a veteran of another war he probably would’ve received The Commonwealth countries’ highest military honour for bravery – The Victoria Cross. He had carried his severely injured comrade over his shoulders and had run at double pace in order to ensure that “no man was left behind.” Any other war he would’ve come home a hero, but on his return he was called many names; murderer, child-killer, Imperialist Puppet. He hadn’t served for fame or glory, he had done his job, he had served his country, and had followed orders. He and his fellow soldiers were shunned and he had to hide the specialness of his training, and he learnt how not to talk about sensitive subjects.

It was difficult fitting into a peace-loving society when you had been trained to channel your propensity for violence into your bread and butter work. The aggression still needed an outlet and society was not too receptive of this. He rediscovered football and was able to divert his rage into victorious feats of gallantry. He became a trusted team-mate and was able to translate this into a successful coaching career, allowing his leadership skills to flourish.

His teams did well, and he won many accolades, but the hurt inside continued to need suppressing. He swallowed it deeper and deeper, until he had almost forgotten it, almost. Life had its ups and downs, success on the field, was not always reflected in his significant relationships off the field.

He had received the worst news just prior to being admitted into hospice. As with all the other bad news, he took it like a man. Face to face, without flinching or reacting, there would be time for that later in private. In public he had to represent his team, his unit, he had to be the hardest of weapons. They had told him that he only had three days left to live.

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