Category Archives: Clinical

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 – Earning Trust

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It had taken months to earn their trust. I had to show a willingness to listen. To demonstrate flexibility in shared decision-making. Each clinic visit involved negotiations. I thought I could make them more comfortable with my medications. They did not want to try my medications. I pushed, and they pushed back. I pulled, and they pulled away. I made lots of suggestions, but most of them were shot down. The interactions were always polite, but it was difficult to engage.

I was sure the treatments were making them feel worse, but they would’ve done anything to live longer, no matter what the personal cost. 12 cycles of chemotherapy meant eight months of being imprisoned mostly at home. Unable to venture far from the toilet because of the almost constant diarrhoea. Always accompanied by crampy abdominal pain, day and night. Long days and longer, lonely nights. There was no way to rest properly apart from the few days between cycles when they’d feel almost normal again. Then it was time to start the next cycle.

They had planned a trip with their family. They wanted the children to travel with them to far-off lands. They wanted to create a memory of an exciting family trip. The journey was booked for six months. I was worried about our patient living through the next four months let alone six months. I talked about smaller trips closer to home. The children just want to spend time with their parents. It doesn’t have to be fancy. Short day trips would be just as memorable. The children missed their parent’s cooking. Their other parent didn’t cook as well despite their best efforts. The kids longed for a taste of normality.

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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.

I think therefore I am? – Everyone is Different

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Everyone is different and has different ways of handling suffering. Suffering is a subjective feeling, and the same stimulus applied to different people can lead to different reactions or responses.

When I was in primary school all the children were not keen to see the school dental nurse. I remember going when I was a five-year-old. Back in those days, the dental nurse wasn’t allowed to inject any local anaesthetic, thus any cavities that required treatment would be done so without numbing medications being used. I experienced having my teeth drilled and I was able to put up with the pain by distracting myself. I could almost laugh the pain away in my mind. It was still there but I could frame-shift away from it. Despite many painful encounters with the dental nurse, I was never afraid of going there. A lot of people in my generation developed dental phobias which have persisted into their adult lives.

I can handle physical pain and found myself resorting to my five-year-old self’s tactics when I had my one and only Taiwanese Foot Massage. People willingly pay money for this service. You step into the communal torture chamber on foot. Your feet are first soaked in hot water with pleasant-smelling oils added. Then the masseur dries off your feet before proceeding with their treatment. Around the room, there were groans and screams as people’s foot bones and joints were poked, prodded, compressed and generally abused. The pain was intense and I had to shift my consciousness to my other place.

The physical pain I can handle. Nausea not so much.

Everyone is different and can handle/or not handle different things.

Suffering is defined by the sufferer and the clinician’s role is to observe and adjust the treatment, to try to decrease the suffering.

It is not the clinician’s role to judge a person. Most of us haven’t been to law school or worked as a lawyer. We need to stick with what we have been trained for and do our job as well as we can.

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? – Not On My Watch

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It distresses me to hear on the grapevine of how patients, who have chosen to have assisted dying, in other palliative care units have been treated by staff. Following the revelation of their wishes I have heard of staff treating the patient differently. Not wanting to engage with them anymore, giving them the ‘cold shoulder,’ because of the choice they have made. Some staff refuse to attend the patient even if they push the call button when they need help.

It’s called discrimination. Treating people differently because they are different. In these cases because they have chosen something the staff do not support. A difference of opinion leads to stigmatisation and a change in the mindset of the caregiver. This does not fit in with my own care philosophy. I will not abandon someone due to the choices they make not fitting with my own beliefs. I am in my role for the sake of the patient and their family. They are not there for the sake of my existence.

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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 – No More

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“I can’t handle this suffering anymore I’ve had enough.”

“Okay. I think I can make you more comfortable. Then you will probably be more relaxed and may fall asleep.”

“That’s good.”

“You’d rather be more comfortable and sleepy than fully alert but in pain?”

“Yes. The doctors in the hospital had asked if I wanted CPR. There is no point bringing me back just so I can suffer more. I said no.”

“I’ll record in our notes that you aren’t for CPR. If you were to have a life threatening infection I would not recommend you to have it treated.

“No treatment of infection please.”

“If you have any important things to do or people to see I’d recommend you do it as soon as possible. I can’t predict what will happen tomorrow let alone next week. I don’t want you to miss out on the opportunities to connect with whomever you want to. I’d rather you do so too early, than too late.”

“Thank you doctor.”

“I think it’s time that you talked to your children about what is likely to happen . Our counsellor can give you some advice as to what to say.”

“Okay, thanks doctor.”

“Remember you need to push the call button if you are in pain. Doing so will help us when it comes to prescribing the right doses of medication.”

“Thanks Doctor. Could I get some pain relief now.”

“Sure.”