Tag Archives: communication

I think therefore I am? – Colours

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Most people have a favourite. Something caught your eye when you were a kid. It might be the colour of your favourite toy. Or your favourite food. It might be the colours of your nation’s flag. Colours are abundant in our world, the different shades make the world more interesting.

People are of different skin colours too. Some of us are white. Some of us are Brown. Black. Yellow, Olive-skinned. Grey. Different but the same in many aspects. Various empires sent their colonists out into the bigger world. The locals were impacted and the trauma that was experienced can be passed down through the generations. A deep lack of trust was ingrained by the actions of colonists toward the natives. This distrust can be passed down the bloodline, leading to intergenerational trauma.

When you are in good health you can tolerate a lot more than when you are unwell. Your baseline fears and needs come to the surface under stress. The uncertainty of their situation can leave a person terrified. The fears from the past can come back, no matter how strong a person had been in suppressing them.

Past traumas can be triggered unintentionally and people may want to avoid situations when they feel at their most vulnerable. People try to remain as independent as possible, and they may struggle in their non-acceptance of help. When you are weak and tired you may try to show your strength by pushing people away. Not being able to toilet or shower oneself may be one such situation. Requiring assistance means the loss of privacy and dignity. Having to be naked in the presence of others is a huge line to cross. Having to admit, “I need help. I am vulnerable.” A nightmare situation for anyone, having to be fully exposed. Add to that the inter-generational fear triggered by someone who resembles your ancestors’ oppressors and pre-existing suffering can be amplified.

Colours can affect us in many ways. Red light means Stop. Green for Go. What does amber/orange mean? Speed up or slow down? Everything becomes a blur of colour. The centre cannot hold, as a human being accelerates towards the finish line. The colour in their eyes faded down to a sparkless stare into space. The light of the person dims as they prepare to leave this plane of existence. Off they go to parts unknown, never to return again.

Palace of Care – Existential Devastation

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I was worried about my patient. Swallowing was compromised. Their thinking was compromised. Oral intake was minimal. More of the day was taken over by the need to sleep. Pain control was still inadequate. They felt so out of sorts, miserable in all aspects of their being. A proud person who had worked hard to overcome many difficulties. Trying harder had worked throughout life. The same attitude prevailed during the cancer battle. Pushing themselves harder and harder, no matter how terrible the side effects or the pain. Sheer determination and willpower saw them through.

This came at the cost of themself. They hadn’t felt normal for a long time. The physical pain could be tolerated but the inner voice of existential distress had become unbearable in recent weeks. It could not be ignored. Nothing felt right. It was not supposed to be like this. They should have been planning for a family holiday rather than their own funeral to ease the burden on the family. A casket had been chosen and of course, it had to be in the favourite colour. Different from most people’s preferences but being different was nothing new. Growing up as an immigrant in a mostly white country you are used to being different.

There was so much that had been planned for the future, the future stolen away by cancer. Cancer took away too much and had not finished. It was taking precious life away, draining the internal battery constantly. The image in the mirror was shrinking day by day. The sense of intactness was long gone. Feeling like themself, was but a distant memory from a bygone era, from someone else’s life. There was still too much to do. The need to get everything just right had always been there, now it was all-consuming. Too many competing priorities and time, precious time, was running out. Too many thoughts smashing against each other in their head. Unable to make sense of it all. The nights were the worst time of all. The long lonely nights were when the thoughts reached their crescendo and then deteriorated into cacophony.

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I think therefore I am? – No Surprises Policy

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The idea behind this policy is we do not want any patients or their loved ones to receive any surprises if there is something that we can do about it. We don’t want anyone to be surprised that they are deteriorating. We don’t want anyone to be surprised that their loved ones are dying. This is to give people as much warning as possible if major change is occurring. Signalling transition points allows a person to have some choice in their situation.

No surprise, if their situation is worsening and their condition is deteriorating. They need to know what is going on and/or their family need to know.
If they are told their time is limited then this can colour the choices that they make. What will they do with their precious time? Will they continue pursuing treatments of dubious benefit? Or will they spend their time and energy on completing important tasks with their family?

It doesn’t really matter what they choose, what matters is to offer them the opportunity to make their own choices in whatever situation they end up in. The uncertainty and loss of control in their end-of-life situation are hard for anyone to tolerate. If I can bring some order to their increasingly chaotic situation, it may make a significant difference.

No surprises for staff and volunteers either. How we treat people is important. If you were in the patient’s situation how would you feel? We want to give them as much advance warning as possible. Unfortunately, we don’t always get warnings ourselves. Sudden deterioration in hospice patients can happen at any time. We will try our best to let loved ones know if death is imminent. Sometimes despite the family’s 24/7 vigil, they might miss out on the moment of death. Some people just want to be alone when it is time to die, they want to spare their loved ones from the final moments. One patient couldn’t leave as the love in the room from their family was holding her there.

No surprises if someone is needing to be discharged, to be transferred to another care facility. We will give the patient and their family fair warning of any pending transfer of care.

Palace of Care – No Surprises

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They’d been unwell with cancer for months and it had led to them becoming bed-bound. Their children had tried to look after them to the best of their abilities. The pain had worsened recently and they’d felt more and more fatigued. The family was not coping well and needed help. When admission to hospice was suggested the family had considered it over a few days before agreeing to it.

On arrival, the patient was in pain but was able to make themselves understood easily. Pain relief was provided with good effect. A family member was rostered to be available all day and all night long. Just in case our patient needed anything overnight.

On review the next morning, the patient needed several extra pain relief doses. We incorporated the extra doses into the syringe driver which was running continuously. We talked to the patient’s son about what was happening. We talked about how worried we were, that she might continue to deteriorate further and that we did not want there to be any surprises.

The next morning and our patient’s pain was controlled but they were no longer speaking clearly. It was difficult to understand their speech, and for them to understand our speech. A marked difference compared to yesterday. More family members had come to visit and we spoke to the eldest son. We brought him up to date with what was happening to his parent. Our patient was dying and possibly had days left to live.

Our patient had a moist cough and was troubled by worsened dyspnoea. We explained that we would not recommend antibiotic treatment if there was a chest infection, given the end-stage cancer our patient was troubled by. We needed to make some changes to their medication mixture. The son appreciated what we were doing, and was going to let the rest of the family know what was going to happen. No surprises.

Palace of Care – Hospice Sounds

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They hadn’t had much to be happy about over the past year. A progressive disease, no longer curable given how far it had spread throughout the body. They were determined to continue their chemotherapy despite the demoralising side effects. Most people would’ve given up after two cycles let alone completing 12 cycles.

A strong-willed person with too much to live for. It was the uncertainty that troubled them the most. They knew death was coming and had tried their best to prepare for it. The loss of control troubled them deeply. They found the advance care planning handbook to be useful in covering the practicalities of this part of life. Funeral arrangements were pre-planned, their will was finalised.

They’d been offered an inpatient admission months ago but they were not ready for it.

“Not yet doctor.”

Some months later they’d become more unwell, wracked with pain and distress in the hospital. They were glad to be admitted to our inpatient unit, and we worked with them to bring their pain under control and they were able to return home.

Over the next month, the rate of deterioration worsened. As per their request, we tried to keep them at home with their partner and their children. They came for an outpatient clinic appointment and ended up needing to stay in as an inpatient.

“How long have I got left?”

“I’m not sure, could be as short as weeks. Could be longer, most people don’t have the level of inner strength you do.”

Once comfortable they were able to relax and even smile. They were on the receiving end of input from the local Dad Joke specialist. Laughter was heard coming out of the room that last week had only witnessed tears. Their laughter was one of my best achievements of the past week.

Palace of Care – Mixed vs. Clear Messages

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I was worried he would die before the day was over. When I first met him he was hunched over in bed, his jaw clenched tight, his upper teeth were grinding into his lower teeth. His breaths short ragged grasps. In extremis, with tears dripping onto the tousled folds of the bedclothes. His family’s faces replaced by masks of terror. The tension in the room was thick, the silence as we all held our breath as the patient grunted in agony. His wet eyes begged me to help him.

“Your pain relief isn’t strong enough. I’ll make some changes to get you more comfortable. I’m very worried about you. You might get much worse. Let’s work on your pain first.”

I headed off to prescribe the higher doses and to ask the nurses to prepare them for our patient. He was another classic haematology patient. His discharge summary had recounted the breaking of bad news the day before. There were no further treatments available to stop the blood cancer. The team recommended no further transfusions as they would not be helpful. The next morning the standard blood tests had been repeated, and no surprise, all the blood counts were low, including a platelet count below 10. This meant the patient was at risk of spontaneous bleeds. The medical teams reaction, was to prescribe a platelet transfusion. The hospice doctors who read the notes were confused by this action. How did the patient and his family feel? The day before they had been told no further transfusions, and then less than 24 hours later, he was being transfused.

Over the weekend we managed to control his pain and he spent some time with his family. The highlight was a visit from his children before they went away for a long weekend trip. I was surprised that his weekend went well. He spent more time with his parents and siblings and other family. He asked our staff what was going on, as he was unsure what the treatment plan was.

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I think therefore I am? – How is it going feel?

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I started preparing for the first conversation years ago. Despite this I still felt nervous prior to the first conversation with a patient who had been approved for Assisted Dying. The End of Life Choice Act 2019 came into effect in Aotearoa New Zealand on 07 November 2021. The first time I met an approved patient was only at the start of this year.

I wasn’t sure how it was going to go. We had been in email contact and I knew their illness had led to speech impairment amongst many other losses. They would be coming with their sibling and sibling-in-law, and their sibling’s child. Coming in a for a pre-visit to our venue, some weeks prior to their scheduled assisted death. They lived in another catchment area and were not a patient of our hospice.

What would it be like talking to someone whose death was scheduled with certainty in two weeks’ time. In every other end of life conversation I had was full of uncertainty. When would it happen was a mystery and there were no solid leads or clues with which to solve it. How would it feel like to talk to someone who knew exactly when they would die?

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Palace of Care – Straight Up Now Tell Me

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Things hadn’t been going so well in recent weeks. Our patient had needed to come in for treatment which helped one of their issues, but came at a great cost. Pain was made much worse for most of the day after the treatment was given. This was on top of a high background level of pain already. I suspected our patient downplayed their pain. They were well versed in putting up with significant amounts of pain. There was no questioning their toughness and strong determination.

I said to them, “anyone else would not have been able to handle what you had in the past year. Most people would’ve stopped treatments after the first two cycles, but you had more than ten cycles. I think you have stayed alive through sheer will power alone.”

We had come to the point where, “First Do No Harm,” had to be considered. The treatment we had provided had made the symptoms worse, it had increased the suffering experienced. The entire management plan needed to be reassessed, with the patient and their spouse. A meeting was scheduled for the next day.

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Palace of Care – What’s Happening?

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“What’s going on with the breathing? I counted a five second pause. I thought that was it. Then the breathing started up again. It’s been happening all night.”

“When you are very unwell the breathing control centres don’t work right. The breathing will speed up, then it will slow down. There will be gaps in the breathing, and then it starts up again. As a person becomes more unwell the gaps become longer and longer.”

“Why have the hands become cold?”

“As a person dies their organs don’t function as well. The blood circulation fails, that’s why the hands and feet can become cold. It’s like a light on a dimmer switch, the light of the body becomes dimmer and dimmer as it deteriorates.”

“We talk but we get no response. The last time they responded, it was all confused.”

“As a person dies their thinking becomes less clear, and they become sleepier. Nature or a higher power is trying to protect the person going through the dying process. So they don’t have the full 3D/HD experience, as it might not feel so pleasant. Keep on talking to them, they may not be able to respond, but hearing your voices will provide comfort. Hearing that the family are looking after each other will provide relief.”

“How long have they got left?”

“ I’m not sure, but a rule of thumb we use is, if changes are occurring over months, they might have months left. If changes occur over weeks, it could be weeks left. At the moment changes are occurring over hours, so there might be only hours to short days left. They are so unwell that they could actually die at anytime.”

“Will you let us know if you see signs of death about to happen?”

“We will try our best, but we don’t always get any warnings. I know you are all trying to be here at all times but I want you to know that some people will sneak away when there is no-one in the room. I’ve seen it happen too often to discount it as something that happens. No matter how long they’ve got left we are going to do our best to keep them comfortable. We’re going to get you all through this.”

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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