Palace of Care – Confusion

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We were confused by the discharge letter. Our patient had been transferred from the hospital after a two-week admission. During the admission, the Oncology treatments had been stopped. On discharge, it appeared that the medications had been restarted. The Oncologist’s plan was unclear. On the second day, the patient developed a new abdominal pain. The pain was so severe that the patient felt they were ready to die. We changed their pain relief and also tried to cover the shortness of breath. By the afternoon the patient was more comfortable and able to sleep. The family had received a phone call asking for the patient to return to the hospital for further treatment. This surprised the family and our hospice team as the patient had barely been in the inpatient unit for 24 hours, and the hospital asked them to return. We called Oncology to find out what was going on. They wanted to give radiotherapy treatment to the patient’s back, for pain relief. We said we would see how the patient was the next morning as we were unsure if they’d be well enough to return to the hospital.

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Palace of Care – Leave Request

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“Doctor, can I go out on leave this weekend?”

“What have you got planned?”

“I’m going home to spend time with my family, to see my children at home.”

“Will you be doing any cooking or cleaning?”

“No, I learnt my lesson last weekend.”

“You did too much?”

“Yes, I didn’t think to ask for help, I wanted to do the cooking all by myself. It used to be so easy. If I had allowed them to chop some vegetables I wouldn’t have been so tired.”

“It was a struggle wasn’t it?”

“Yes, I became irritated and grumpy.”

“You can certainly go home on leave but I don’t want you doing any work. You are there to rest and spend time with your kids. I don’t want you doing the housework.”

“I’ve had to let it go. After I am gone they will be in charge of the house and do things their own way.”

“It must have been hard for you to let go.”

“I don’t have much time left or energy.”

“You’re human, not superhuman.”

“Yes.”

“Are you going shopping again?”

“Yes, I have to buy clothes for the children…for them to wear to my funeral.”

“Buying the clothes sounds important to you.”

“I’ve always wanted them to look good. It’s important to look your best at all times.”

“Have a good weekend.”

“You too Doctor, see you Monday.”

Palace of Care – A Stitch in Time

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Our patient was dying and we had prepared her family for her imminent death. Their Imam had visited and they had already engaged the services of an Islamic funeral director. Their custom was for the body to be buried within 12 hours or before sunset. The timing was important and we wanted to avoid any hold-ups if possible. s

The eldest son had a special request. His mother had a stoma in place, this allowed solid bodily wastes to be collected in a small plastic bag. He asked if our staff would be able to sew up the stoma after death. He said their tradition was for the body not to have any foreign objects present. The funeral director had already told them that they could not help with this post-mortem procedure. The concern was there would be soiling after the stoma bag was removed. They wanted everything kept as clean as possible thus sewing up the stoma would prevent it from leaking.

I asked my medical team but no one available was keen to help. I would’ve been happy to come back to suture up the stoma myself but I was due to leave for an overseas trip the next morning. I asked around our other staff and three nurses with suturing experience put their hands up.

Our patient died the next day and her stoma was neatly sewn up by one of the nurses before the funeral director came to collect the body. The family were grateful and were able to bury within their customary timeframe. I was proud that our team had been able to help the family in their time of need.

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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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 – 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.”

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 – Heart Follows Mind

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Her brain had no trouble accepting what was happening but her emotional heart took longer. The love of her life for over 45 years of marriage was dying. The doctors had warned that he might become confused and agitated as his condition deteriorated. He was comfortable and the pain relief had taken a few days to optimise. He was more relaxed and then deteriorated. He became less lucid as we neared the end of the week.

A clash of cultures became evident thanks to some of the visiting friends of the family. “You have to ask your doctors if they will give infusions to your husband. In China, he would be having lots of intravenous fluids, and other treatments such as tube feeding.”

We had to explain that artificial hydration would be too much for the dying person to handle, and would worsen skin swelling and likely worsen his breathing. We did not want to add to his already heavy burden of symptoms. His wife indicated she understood our rationale. We explained he could die at any time.

Intellectually his family could accept the ongoing bad news, but when it came to emotions it would take much more time. Their loved one was dying and all they wanted to do was to help but didn’t know how to. Mouth care was a task that we delegated to them. Our counsellor was asked to talk to the family.

Their brains understood the words we shared, but their emotional hearts couldn’t understand the language and operated on feelings instead.

Palace of Care – A Self-Sufficient Family

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One of the cruellest consequences of COVID lockdowns was the restriction that we had to place on visitor numbers. We were generous in that we would allow each of our patients up to four named visitors, but this still fell short when it came to families with more than four members. We acted with humanity and compassion, thinking to ourselves how would we feel if it was us in their situation? But what do you do when someone has 15 children? It is difficult for a family to choose who gets to come in, and who has to stay out. Video chat technology allowed for virtual visits but they were no replacement for in-person visits.

Our patient was a man in his 50s who had six children, the two eldest lived out of town. The four younger children were keen to spend time with their Dad, and their Mum struggled to choose who would be the nominated ones for any given day. The family had always been close and the parents had home-schooled their children. They had always done things in their way. Having Dad critically unwell and away from home added to the overall disruption of their family life. Our team’s opinion was that our patient only had limited time left to live. Given the circumstances, we flexed our approach and allowed the four younger children to visit alongside their mother.

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