Palace of Care – Dehumidifier

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We didn’t know what was keeping him going. He hadn’t eaten anything for ten days. No drinks for days. Somehow he was still producing urine. Where did it come from? His son speculated that he was drawing the water out of the room’s atmosphere. “Dad’s become a dehumidifier.”

He had outlived many doctors’ prognostication attempts, including my own. “Anyone else would’ve died a week ago. He’s not anyone else he’s stronger than most people.” Somehow he had stayed alive with his metastatic cancer for four years. He had received multiple treatments over the years. They had kept him alive, but the last three months had been a struggle. He had lost 20kg over the years of illness. 10kg had been lost in the past three months because of severe nausea.

The cancer was cruel as it melted his body away it took away his appetite. His once mighty frame was reduced to skin and bone. He still wasn’t used to his reflection, it had continued to change. Despite all of the weight loss, one thing he never lost was his sense of humour.

In life he had always done things in his way, at his own pace and it was no different in his death. The family maintained their long vigil, and he remained mostly asleep but responsive when he was awake. If our staff found evidence of his imminent death we would inform them. We also warned them that sometimes people don’t want anyone to be around at the point of death and that he might slip away when an opportunity presented itself.

He was kept calm and comfortable. His family were supported and our patient died three days later.

Palace of Care – Strongest

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“Hey, long time no see.”

“Hello Doctor, how are you?”

“I’m good, how are you doing?”

“I’m sleepy and tired, that’s what I do. I sleep most of the day and the night.”

“Do you have any pain?”

“No, the pain is well controlled. The urine is still bubbly. Why is that?”

“Your cancer has caused a connection between your bowel and bladder. It’s called a fistula. It’s a sign that it is getting worse.”

“Yes, I am getting worse. I felt so unwell the other day. I thought that my end had come. I just felt so deeply tired. I couldn’t get out of bed for two days. My family and the hospice staff thought I was going to die.”

“Then you woke up again today?”

“Yes, and I’m going to spend some time at home. How long have I got left?”

“I don’t know. I thought you were days away from dying a few times over the past weeks. You keep on proving me wrong, over and over again. You’re stronger than most humans. I think you’re the strongest person I have met in my 15 years of working in palliative care. I don’t know how you do it.”

“I don’t know either. I feel so tired, but I keep on hanging on.”

“You’re being yourself. I wish I could be more accurate with your timeline. You are deteriorating but your willpower is still strong, but your body is fading.”

“Yes, my memory has gone, and I talk to people who are not there, sometimes for a long time.”

“Is that distressing you?”

“No, it isn’t too bad. I can handle it but I get irritated sometimes.”

“Let us know if it gets too annoying, and we can adjust your medications.”

“Okay.”

“You enjoy your time at home. I’ll see you tomorrow.”

“Thanks Doctor.”

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 – 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.

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 – 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 – 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.”