Tag Archives: communication

Palace of Care – Operational Success?

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Photo by Edu Lauton on Unsplash

Our patient was reviewed by the surgeon in our inpatient unit. It was kind of the doctor to see him at our hospice. Our patient and his wife were able to discuss everything with the surgeon and he left them to think about the proposed operation. They talked about this with a number of our staff and then discussed it with me. We went through all the possible benefits and risks and we decided together that they would like to try the operation.

The operation would involve removing a specific part of the spinal cord in order to disrupt the nerve pain from being transmitted.

The operation went as planned and our patient recovered well from it.

We were expecting him to come back to our inpatient unit for a period of rehabilitation but he was good enough to go directly home.

The operation had successfully controlled his nerve pain, and we could reduce his medications a lot.

He was well enough to go to his holiday home for some weeks in the summer, something he had thought he’d never be able to do again.

Physically his pain was well controlled but the non-physical aspects of his pain remained. The existential and emotional distress were not improved at all, in fact they might have worsened. A common side effect of the pain relief medications he had used was drowsiness. Now that he didn’t need as much physical pain medication he was less sleepy, and had more time to think. More time to think about the grimness of his reality.

Unfortunately our proud patient had refused all input from mental health services or counselling. The idea of talking to people about his feelings was an alien concept for this self-described working class man. He just couldn’t discuss these things with anyone, it was a step that would always be too far for him to ever take.

I was called by the staff of the local hospice which covered the area where his holiday house was. They had been asked to call me for my opinion on what they should do in regards to further treatments of life-threatening infection. Knowing the man as well as I did, I didn’t think further treatments would be helpful. He was miserable and staying alive longer to be more miserable would not help him and would only prolong his suffering.

Psychologically he continued to shut down and withdrew from the world. He died at home after being well looked after by his devoted wife with the assistance of our visiting staff members.

Palace of Care – Desperation

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Photo by Julien L on Unsplash


After a week with us things had settled down. Pain was better controlled with more effective medications. His skin was well on its way to healing. Our patient had become bored, and had been watching more online streamed content to pass his days. A joint decision was made between our patient, his wife and our staff. He would be discharged home with extra home supports arranged. His wife was confident that she would be able to handle things at home. Our community hospice nursing team would restart his home visits. Over the next weeks small adjustments were required for his medications otherwise everything else was controlled.

Two months later and the nerve pain which had shot down his legs, intensified. Side effects of his medications became a problem at higher doses. We needed to try something different. He was re-admitted to our inpatient unit for symptom control. We increased his doses with only mild pain reduction but a marked increase in side effects. He lost his lucidity, drifting in and out of sense. This distressed him more than the pain did. For someone who had prided himself on his intellect, losing access to it even briefly was one of the worst of his fears made real. To be unclear in his thinking was torturous, what he was most afraid of. Not being able to understand or communicate he felt trapped in the prison of his body.

We had to come up with something different. We consulted our colleagues across the region including pain specialists and neurosurgeons. An operation was proposed, and preparations were made. No guarantee of success. We felt almost as nervous as he and his wife did but we had to do something.

Palace of Care – Intertwined

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Photo by Dan Meyers on Unsplash

I went to visit a famous man in his home. He was well-known locally and internationally. He had achieved great things throughout his life. The last few years were difficult for him due to several illnesses. One bad thing added to another, added to another. A painful condition had developed at the site of a previous radiation treatment. It caused nerve irritation resulting in electricity-like surges of pain even at rest. If you’ve ever knocked your funny bone you’d understand the feeling of nerve pain, but this was much worse. The pain relief he was on didn’t work, and he didn’t want to try anything else. He hadn’t slept for most of the week. His wife hadn’t slept either as she was trying her best to look after him. The hospice nurse had talked to them about admission, but he was reluctant.

I joined the nurse on the home visit, and we were welcomed in by his wife. We went inside and there was a huge pet cat inside, the size of a medium-sized dog. I noted the chairlift as we went upstairs to his bedroom. He had been stuck in bed for weeks as his legs had become weak due to nerve issues. He had developed several skin pressure ulcers. He looked exhausted, he winced in pain. He was constipated and full of frustration. He looked broken and it didn’t take too much to convince him that he needed to be admitted. He needed a general sort-out, especially of his pain. I promised him we would keep him in the inpatient unit for as short a time as possible, and that we would send him home if things improved.

We worked on his pain aggressively and brought it under control fast. His constipation proved to be more stubborn. His skin pressure ulcers responded well to our nursing team’s attention. He hadn’t spent much time apart from his wife and he worried about her when she wasn’t around. He thought she did too much for him and he wanted her to take a break. At the same time, he thought he would miss her too much. They had been together through many hardships and many successes, the highs and lows of a busy intertwined life. Everything had become a struggle in recent weeks because of the loss of mobility. How long could they continue together at home? Would they have to live separately?

Palace of Care – Nothing is certain

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Our worst suspicions were confirmed by the virtual clinic appointment. The bad news that we had expected had eventuated. No further treatments were available because of progressive disease. The news caused her to shut down and to shut down our attempts at communication. She became quiet and wanted to sleep more. She seemed to be distancing herself from the world. She didn’t want to see her baby. It was as if she had given up on life.

How long she had left to live was uncertain. We thought it could be as short as weeks, but it could be much shorter or longer depending on her frame of mind. Had all her hope been taken away? As cancer grows the problems it causes usually worsen. Pain increases, energy decreases, and fear can balloon. What was the right thing to do? To encourage her to live whatever life she had left? We thought she still had things to live for, especially her baby. What did she think? For some patients dying as soon as possible may spare them from too much suffering.

We needed to check with her what she wanted. We needed to find a way to ask her, but first, we needed to re-establish our connection with her. She asked for us all not to come in and we respected her wish. She allowed us to talk to her family as she did not want to break the bad news to them herself. We would try to talk to her more during the weekend when there would be much fewer staff members around.

Palace of Care – Nudge

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Photo by Dimitry B on Unsplash

The physical and emotional roller-coaster ride continued for our patient and their family. Close to death one week, then an incomplete recovery. No longer imminently dying, but far from sustainably living. A plateau in the journey, like being stuck in transit with no clear plan of when the next part of the trip would continue. He still wanted to start his journey up to heaven, but his flight had not been called yet. He improved a bit more to the point that he was slightly better than when he first arrived. This was disappointing for him as he felt he was heading in the direction opposite to where he wanted to go. He maintained his faith and stayed calm. His Lego showcase continued to fill the room. Extra shelf space had to be organized. He was worried that he was taking up a bed that could be utilised by someone with greater needs than him.

Nothing changes when nothing changes. Sometimes a small nudge is required for situations to change. We decided to start discharge planning again as he was holding his own. We didn’t want to make him anxious as we had with the previous discharge plan so we talked to his family about it and not to him. He continued to do well, more Lego assembling occurred over the next weeks while his family found him a suitable place. He remained active around our ward, walking around slowly between Lego sessions. A new skin infection appeared but it wasn’t too painful for him. We had promised him again that we would not start any antibiotics and we stuck to our word.

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Palace of Care – Ready To Go

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Photo by Andrew Neel on Unsplash

He didn’t look too bad. He had lost weight from the time I had last seen him which was about six weeks ago. He was a bit slower to answer questions and he looked exhausted, but he didn’t look all that different. The lower leg ulcer looked worse, he had also developed a skin infection in his hip. He made it very clear to me that he did not want the infections to be treated. He did not want to go back into the hospital. He knew that untreated infection could lead to death. That’s what he wanted. He wanted to die as he felt he did not want to continue living after almost ten years of worsening pain. A decade of decreased function, of being unable to do the things he liked. He had been an active grandfather previously but he couldn’t do a lot of the things he loved to do with his grandchildren. Walking was difficult at times and he was worried about how his family were doing as he knew looking after him took a toll on them. He would never consider assisted dying but he wanted assistance from a higher power. He had been praying for his lord to take him.

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Palace of Care – Hot Potato

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Increasing doses of pain relief had not eased his pain. He was becoming confused and sleepy. The decision was made to admit him, there was a lot to sort out. His main caregiver was his wife and she was exhausted. Neither of them had slept for days. His medication list was like a pharmacy textbook and included members of almost every medication category. Many medications had sedating side effects. Polypharmacy – One man, 25 medications. We started to remove as many medications as possible.

We took away one medication per day over the next weeks. If there were no ill effects we would remove the next one, and the next one. His liver enzymes had been working overtime for many years. Medications had been started to treat the side effects of other medications. Older medications which were not working for his condition had been continued for a long time, as he had always been on them. We trimmed his list down as much as we could, removing ten items. We needed to be able to justify every medication that we kept on his list. Slowly but surely he resurfaced. He was able to sleep at night and be awake during the day. At the same time, we worked on his pain.

There were several different pains in various joints of his body. It had started almost ten years ago, and it had taken years for him to be diagnosed with an illness which caused multiple joint pains. The pain was never fully controlled, it became a chronic pain case and he had been referred by his chronic pain specialist for pain control. We searched all of his electronic medical records but could not find a life-limiting illness, he did not fit into our referral criteria. He had terrible pain but was not dying of anything. (I believe that chronic pain doesn’t just shorten quality of life but likely quantity as well.) He had been living with his physical suffering for almost a decade. I suspected that he had suffered from non-physical pain for much longer following a harrowing loss over four decades ago, that he couldn’t talk about. I’m not sure he had ever dealt with his grief, and instead poured himself into the work of helping others. We continued to work on his pain and over the next weeks we had brought it mostly under control.

The pain would still flare up at times but overall was better controlled. His medication list had had dramatic weight loss. We began to make discharge plans. His family told us that his wife had health issues of her own, and they worried about the elderly couple and how well they coped looking after each other. With the family’s input, we made plans to transfer him to a long-term care facility. It had been a successful admission and we discharged him from our unit. As he had no other specialist palliative care needs we discharged him from our service back to the care of the chronic pain team and his general practitioner. The couple showed their appreciation with many hugs as we said goodbye to them.

I think therefore I am? – Doublespeak

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Photo by Kyle Glenn on Unsplash

Words need to be chosen carefully. We don’t want to cause distress or harm from the things that we say. We have to be mindful of others’ reactions to what we have told them. We need to be clear with the message that we are trying to broadcast. We need to say what we mean and mean what we say. The same is true when it comes to talking about death and dying. People often avoid using those “D” words. Is this because they are trying to protect the listener or themselves? The use of euphemisms can make the message unclear and confusing. Especially if English is a second or third language for people. What terms can you think of to avoid using dying and death?

They are about to pass away. They have passed away. – Overtaking whilst driving?

We are about to lose them. They are lost. – GPS would help?

They are about to leave. They are gone. – On holiday?

Time is running out. Time has run out. – On what? The Boxing Day sale?

Time is short. There is no time left. – On your Netflix subscription?

They are deteriorating. – Standards are dropping?

They are declining. – What an invitation?

They have extreme frailty. – I have extreme confusion.

They are on the edge. They have fallen off the edge of the cliff. – Quick, call a tow truck.

They are running out of fuel. They are empty. It wouldn’t happen with an EV?

They are really, really sick. – That’s why they’re in hospice right?

They are about to go to a better place. They’ve gone to a better place. – Alabama?

They’re stuffed. – Like a fluffy toy?

It’s the end of the line. – The front of the queue?

They’re approaching the finish line. – About to win the race?

And the list goes on and on….Please feel free to add any favourites in the comments.

What I usually say is, “They are dying. They have died.”

30 dying people explain what really matters

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It’s unusual to read an article like this in the media. https://www.theguardian.com/society/2024/jan/27/advice-from-30-people-who-really-started-living-when-they-found-out-they-were-dying

I wonder how I would react to the diagnosis of a life-limiting illness?

Palace of Care – Beware the Eyebrows of Power

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Photo by Braydon Anderson on Unsplash

We had been expecting him but no one had told us that he had arrived. We needed to break some bad news to him. We had been told that he was easily upset. How would we do this? Better just to tell him what we needed to. There was no way of hiding this information from him, and we would not even try. Open disclosure was the way to go, tell him exactly what had happened in as calm a way as possible.

I couldn’t take my eyes off them. They stood out as dark shapes in a sea of pink and white. They didn’t seem to fit in with the image before me. I could not take my eyes away from them. What did he use to make them so black? His hair was as white as snow and was wispy. His face looked to have been affected by a first-degree sunburn, a shocking shade of pink. What I couldn’t stop staring at were what resembled two dark smears of greeny-black poo which were above his eyes. Was he going through an Art Deco phase of his life? His eyebrows had become bas-relief images highlighting the contours of his face. Was he a cartoon character who had escaped from the movie Where’s Roger Rabbit? I tried to look away but my gaze was magnetically drawn back to the poles of his Northern facing eyebrows. I could not stop looking at them, and out of the corner of my vision, I saw the rubbish bin. “No, I can’t take the bag out of the bin and put it over his head. That would not be very professional.” I closed my eyes and seared into my retinae were two burning hot white eyebrows. “Hello, Exxon-Valdez, I’ve think I’ve found the remaining oil that you lost.” “Hello is that Groucho Marx’s grandson? Son, I’ve found two of your grandfather’s missing moustaches.”

I found my right index finger reaching upwards towards his eyebrows, for a taste test. My colleague had to restrain my hand with a Kimora grip for extra resilience. The substance covering his eyebrows looked a lot like Vegemite or Marmite, those (in)famous yeast-based spreads. Nutritious but not particularly good-looking. Spreadable tar. A passing resemblance to every human baby’s first bowel movement – Meconium. I remained entranced, mesmerised, hypnotised by his eyebrows of power. The world started spinning around me…as if dark black eyebrow shapes were swirling around like a gigantic black hole, drawing me closer to their event horizon, taking my very breath away, the curtains started being drawn on the stage of my mind as I became lost in the inky blackness…”the next thing I remember officer was waking up in the hospital bed.”