Palace of Care – Hot Potato

Photo by freestocks on Unsplash

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.

Palace of Care – Chronic

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The chronic illness had been there for twenty years and had disrupted every aspect of their life. It had caused a lot of pain. It was finally diagnosed only four years ago. Treatments were started but never made a significant difference. The effects of many long years of untreated illness were permanent. Somehow despite all of their travails sense of humour was maintained and they had even maintained gainful employment. Others would have been changed into photographic negative images of themselves, but not this person.

They prayed to their God for a way out of the seemingly never-ending suffering. Some years later the prayers were answered in the form of inoperable cancer which at the time of diagnosis had already spread throughout their body. Actual relief was the response when they were given the bad news. That’s how bad quality of life had been. They had considered accessing the Assisted Dying service but thought it would be against their religion. Their end was in sight, cancer would provide a natural escape from suffering, but it still felt far too slow…

The right words matter when talking about pain

Michael Vagg, Barwon Health

It is no coincidence that we describe the “pain” of loneliness or the “agony” of rejected romantic feelings. Paper cuts can be “excruciatingly painful”, but so can watching the social mishaps of Basil Fawlty or David Brent. Personal criticism can be “stinging”.

The book The Patient’s Brain outlines the evidence that later evolutionary traits such as social cognition and language appear to have grafted themselves onto the ancient brain functions that alerted us to external threats or bodily damage.

Words are neurological events. They are meaning-laden puffs of air that our brain transforms into knowledge, opinions, emotions or danger signals.

Shakespeare, perhaps the greatest wordsmith of all time, frequently used bodily sensations including sensitivity to pain as metaphors. If you’ve ever complained about the “bitter cold”, called an ugly sight an “eyesore” or felt it “sharper than a serpent’s tooth … to have a thankless child” you might know what I mean.

Words affect pain

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How badly do we want to solve this $32bn dollar persistent pain problem? | via @ConversationEDU

It’s National Pain Week in Australia and I wanted to share this excellent article by Pain Specialist Dr Michael Vagg, first published in The Conversation. I have huge respect for my colleagues caring for people with persistent pain. It is a challenging specialty, often dealing with complex physical, psychological, social and existential challenges, in the setting of limited resources. We often call upon their services to help manage palliative care patients (particularly with interventions like intrathecal catheters or nerve blocks). Also, as the palliative care approach is being taken earlier in the trajectory of many diseases, we are increasingly caring for patients with persistent pain. – Elissa


How badly do we want to solve this $32bn dollar persistent pain problem?

Michael Vagg, Barwon Health

This week is National Pain Week so it’s only fitting that I should climb onto the soapbox again in support of people with persistent pain, their employers, workmates, friends, and families. The economic burden of persistent pain in our country is enormous, and the arguments in favour of a co-ordinated national response are compelling. The lack of such a political and economic imperative puzzles me. If you don’t believe me, perhaps this will convince you. Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

Welcome to this weekend’s reads. People seem to enjoy the cute animal stories, so I’ve included one (near the end, if you want to read it first).

The latest paediatric palliative care video (below) from Little Stars is about treating chronic pain in children. It’s nice to see how the interdisciplinary team interacts with, and respects, the girl in the video.

An article that is all over my social media feeds this week: Knowing How Doctors Die Can Change End of Life Discussions. It also brought back to mind this article on How Doctors Die. (NPR)

“I felt like I was beating up people at the end of their life…I would be doing the CPR with tears coming down sometimes, and saying, ‘I’m sorry, I’m sorry, goodbye.’ Because I knew that it very likely not going to be successful. It just seemed a terrible way to end someone’s life.” Continue reading