Author Archives: James

I think therefore I am? – No Sale

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Despite my best efforts sometimes people just aren’t interested in what I have to sell. I am trying to work in the best interests of the patient. I want to make them as comfortable as possible. If there is pain I want to alleviate it as much as possible. If there is breathlessness I want to do something about it. Untreated distress in a patient will lead to distress in their family members. Similar to the care philosophy in Paediatrics, in Palliative Care practice you need to consider the patient, and their loved ones as the unit of care.

The duty of care is to the patient above all but consideration for their loved ones is essential. They will be the ones who will survive this episode of care. Reduction of their distress needs to be considered secondary to reduction of patient distress. Most of the time we will all be on the same page. The patient wants their distressing symptom relieved, as do their loved ones, as do the clinicians. Everyone is in agreement and things are relatively simple.

This is not always the case though. At times I identify suffering in a patient and I will recommend a course of treatment. All treatments will have side effects, with a lot of the medications we use sleepiness is a common side effect. The patient may not want to feel sleepy and will try to put up with the distressing symptom themselves. Or their family will want them to be as alert as possible, which may come at the cost of comfort.

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I think therefore I am? – Take a Break

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It’s important to be able to switch off and take a rest. We are human beings and are not robots and though we need time to recharge our batteries. There is only so much time we can work before we need to take a break.

We cannot be on duty 24 hours a day as we need some time out from the grind. A job is a job, it can’t be your life, no matter how much you like or love your job. Are you in your job for the right reasons? Who are you doing your job for? Is it for the money or the prestige? For fame and glory?

What impact do you want to have on this world we all live in? What is your definition of success? What will it mean for you to have achieved your goals? What sort of difference do you want to make on other people?

On your days off try not to check your emails. Leave your calendar alone. They will still be there after your short break. They won’t be pining after you, and probably could do with some time away from you as well. There will always be work to fill up any spaces in your day. Nature abhors a vacuum and will find something to fill in your time.

As children we can’t stand being bored, every waking minute needs to be filled with 60 seconds of stimulation. As an adult I long to have a chance to be bored. Each minute is filled with 120 seconds of tasks to be done. There are too many interesting things to do. Too many distractions in life. Becoming bored will allow for some creativity to sneak back into your life.

Allow yourself some down time. Who knows what will pop up? You are not a robot, and even robots need maintenance time and care to run efficiently. Take it easy on yourself. Show yourself some self-care and self-compassion. You deserve it.

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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Photo by Fredrika Carlsson on Unsplash

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.

I think therefore I am? – Stream of consciousness writing exercise

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Can you imagine a world where palliative care was available to everyone who needed it. What would it need to be sustained?

Funding source.
Wellness programmes for staff.
Community engagement.

A change in mindset would need to occur to enable people to care for the dying members of our communities. Maybe if people started caring for the dying, they might also care about those who are living as well.

A world where people respect each other, where the human commonality is celebrated instead of differences highlighted.

Could good care of the dying lead to a more compassionate world?

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Palace of Care – Respect

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The first clinical task of the morning was to take care of the patient who had died overnight. The family had been holding their vigil for the previous days. There had always been someone there at all times. They didn’t want our patient to be alone. Having the family staying had helped to make our patient more comfortable.

The patient had died three hours ago. Their skin was cold to touch. Pulses were absent. There were no heart or breath sounds during one minute of listening. The pupils did not react to light. Confirmation of death would be followed by certification of the death.

Cause of death was recorded on the death certificate, in as simple terms as possible. Our patient had died of metastatic cancer.

A letter was written to the general practitioner as we didn’t want there to be any surprises.

The dead person needed to be treated with as much respect as the living.

Their family needed to finish their vigil, and to move on.

The funeral director was called and they came to collect the body.

Rest in peace.

Palace of Care – I’m good Doc. How are you?

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In Palliative Care settings you often see many things much worse than death. Death can be a natural release from suffering. Over many years of working in this specialty, I have witnessed many forms of suffering. Most of these situations involve severe pain. Everyone reacts differently to their symptoms. Some people can handle pain, but can’t handle nausea. Others can’t tolerate any loss of their cognitive abilities. Each individual must have a bespoke management plan designed for them.

I knew my patient could handle pain, he had put up with a lot of it over many months. He didn’t complain, he wasn’t angry at God or Jesus. In fact, his faith was stronger than it had ever been. Maybe it was his religion that allowed him to cope with his many pains. We managed to control his back and leg pains well. He was able to sit in his power wheelchair again. Something he had missed doing over the past month due to severe pain. His power chair meant freedom, he could take himself outside to smoke. He was able to go to the local convenience store to buy some sweets and other supplies.

One weekend I had trouble tracking him down. Every time I went to visit him he was out of his room. I finally caught up with him after his return from our hospice shop down the road. He had purchased a hoodie, a small wall hanging, and a little succulent plant to look after. He’d also bought enough instant noodles for midnight snacking over the weekend. He was doing well, and we managed to discharge him back to his residential care facility after the weekend.

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Palace of Care – Job Trials

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He didn’t hide who he was. He owned the mistakes he had made. He had a rough childhood but didn’t make any excuses. His father had taken him from New Zealand to live in Australia when he was a young child. This took him away from the support of the rest of his family. His father didn’t do a good job of raising him. Violence was part of his young life. Soon he became a ward of his adopted state. A volatile childhood led to an unstable adolescence. Self-medication of his trauma led to involvement in the drug scene.

He met a lady, and they thought it was love. Two babies were born before she left him to look after the children by himself. He didn’t know what to do, with no father figures in his life to base his parenting on. All he knew was he did not want to be like his own father. He tried his best, but raising children is an expensive activity. He needed money but couldn’t work full-time. He turned to dealing drugs to support his children. It worked for a while, he could buy nappies, formula and other stuff his kids needed. Things were going okay until he was caught.

Intergenerational trauma was replayed. His children lost their father to the prison system, and they became wards of the state. The tragic cycle continued again, would there ever be an escape? He was deported back to his childhood home, a place alien to this adult who barely remembered his younger years. Times were hard, he tried to keep in touch with his children but they soon forgot their father.

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I think therefore I am? – How Much Is Enough?

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How much is enough? This is a question not asked often enough of ourselves.

Many of my patients had been saving their fun times, their big and only overseas trip until their retirement. I’ve witnessed many tragedies as people retired and become unwell. The opportunity to enjoy their hard-earned reward stolen from them by illness. Falling unwell soon after retirement. Going from the working life to the dying life within a matter of months.

Balance must be sought and acted upon. That’s what my Aunty Helen always tried to teach me. It is good to scrimp and save but enjoy yourself along the way, as you may never get the chance to. I’ve seen it in the stories of the patients I look after. They saved up all their enjoyment until the end but were too unwell to enjoy anything.

Working in palliative care you’d think we’d learn the lesson – life is too short. Seeing this stark reality daily through others’ experiences could act as a stimulant to action. Often it doesn’t, we practitioners are just as human, just as blind as everyone else. It won’t happen to me. I’ll be one of the lucky ones. But it could. Happen to anyone.

Are you still working towards your goals and values? Are you being true to yourself and your life mission?

How much is enough?

It depends on who you ask, everyone will have answers which match their bespoke lives.

How much money is enough?

How many investments owned is enough?

How many degrees studied is enough?

How many books written is enough?

How much time is enough?

Never enough time.

Palace of Care – A Change of Plans

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We knew he would die soon and we asked him if he wanted us to contact anyone. He told us he would like his son to know, but he didn’t have his phone number. By this time he was too unwell and needed help with communication via social media. Our nurses helped him to send a message via his accounts. He died before he received any replies.

As per his wishes, we had arranged for a funeral director to uplift his body as he had wanted a simple cremation. He had limited savings and arrangements had been made with social welfare for a funeral grant to pay for his cremation. Our nurses again checked his social media accounts and found a reply from his son, including a phone number. A phone call was made overseas and was answered by the young man’s foster mother. She was told of our patient’s death, and said that his son wanted to come over to see him, and would arrive in town in three days’ time.

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