Tag Archives: suffering

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 – If the walls had ears…

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I felt like for the first time in ages that I got my husband back last night. He wanted to take control of the remote.

We watched part of a movie together and he was able to enjoy it.

For the past two months he hasn’t been able to do much, and hasn’t felt like doing anything.

Last night it was like he had come back.

The pain I have got at the moment is nothing compared to what I have been putting up with in the last weeks.

I haven’t been to sleep for weeks, the pain keeps waking me up.

Last night I did wake up during the night but I was able to get back to sleep again. My wife didn’t even know I had woken up.

The pain is still there but it’s less than it was.

I’d like to get up to go for a walk later, maybe get some sunshine.

Zero is no pain at all, ten is the worst pain you’ve ever felt. How would you rate your pain now? I want you to ask for some pain relief if the pain level is 3 out of 10. If you let the pain get up to a 7, then it will take longer and will take more medications to control it. I want you to hit the pain when it is still low, we want your pain to be as close to zero as possible. Please let us know if you need anything, I don’t like my hospice patients putting up with pain, it drains your precious energy away. Let’s try and free up your energy for other things. Please let the medications do their job for you.

Has anyone told you that you look like someone?

Yeah, I’ve been getting that all the time. I used to explain to people that I’m not who they think I am, but they would never believe me.  Now I just play along with them and it can lead to interesting conversations about all sorts of political policies.

SCM – Daily Dose of Suffering

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Photo by Chandler Cruttenden on Unsplash

Four years ago I went on a Wellness Retreat. Some of my colleagues laughed at me once I had returned and discussed some of the activities I had paid a lot of money for. During the retreat, I ate much smaller meals than usual. I woke up earlier than usual to do yoga, followed by a tiny breakfast and then hours of hiking. Another activity was fasting for 36 hours, 24 hours of which were spent in total silence. The activities were interesting to try but I have not continued with most of them. I also learned about thermotherapy, with exposure to heat in the form of a 90-degree Celsius sauna followed by ice baths. The cold water exposure is something I have continued to this day.

I shower as usual using warm-hot water. At the end of each shower, I turn the water temperature to total cold. This feels awful for the first 10 seconds and my mammalian dive reflex is triggered, with much deeper breathing. During the winter months the water is extra cold. The next 10 seconds are less unpleasant. By the time I have reached 30 seconds, I can tolerate it, and my hands and feet have become cold at which point I turn the water off. As soon as the water stops a warm feeling surges through my body and I sure do feel alive.

The cold showers are my daily dose of suffering and I feel they have built up my resilience over the years. I will continue BBRRRRRRR.

Palace of Care – The Contrast.

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The portrait was the first thing that caught my eye when I entered the room. A strongly built olive-skinned young man with a confident smile. His eyes had a mischievous glint as if he was just about to share a joke. Dressed in a well-fitted suit oozing simple elegance. A man in his prime who was enjoying life. He looked like someone with a bright future ahead of him. Happiness personified.

I looked around the room but did not find the man in the picture. On the hospital bed was a small unwell-looking man. His teak-coloured skin was an adverse effect of the many treatments he had received over months. His cheekbones were too obvious, stark evidence of massive weight loss. With great effort, he turned slowly towards me when I introduced myself. The result of too many sleepless nights and what may have felt to him prolonged incarceration in the hospital. The hospital gown was draped around his slender body. A quantity of life-saving infusion ran into a line embedded in his chest. He was lying in bed with suffering etched across his prematurely aged face. Defeat personified.

I was keen to help. I wanted to admit him to my hospice. I outlined a brief escape plan for him. I wanted to help him get home. He kept on breaking eye contact. Was it just shyness or had he heard it all before? His eyes were dull and the only glimpse of a slight spark was seen when I talked about trying to reunite him with his dog. I wanted to make it happen as soon as possible. I thought that his time was running out, that he might only have mere weeks left to live. I wanted to act fast before his condition worsened. I asked him directly, “If you only had a few days left to live, where would you want to be?” “At home.” Home-sickness personified.

Our teams began making arrangements for the transfer. Special training was required for the infusions he was having. We were keen to make it happen.

I think therefore I am? – On Losses

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Photo by Matt Seymour on Unsplash

Being able to do whatever you want is something that we take for granted. Even simple things like walking would be greatly missed if we can no longer do them. Taking out the trash can be a burdensome chore, but you’d likely miss doing it if you couldn’t do it anymore. Wanting to go home but not being able to is something I have learned about over the past week. A cancelled flight was the cause of my homesickness. Patients may be too unwell to go home or anywhere else. Staying in hospice for end-of-life care. A trip outside to the garden can be in the too-hard basket. To be able to mow the lawn again would be a luxury for some people. To be able to wash and feed themselves would be a treat.

The loss of independence and assault on a person’s dignity. The heartbreaking moment when they realised that they cannot toilet themselves without assistance. The losses accumulate as the illness worsens. Every loss is grieved for, some for longer than others. Not being able to do what you want to, not being able to be who you want to be. Most of us have no idea of what real loss is. Quality of life is defined by each person themselves. People can get to the point when they no longer wish to live their current life. When they have had enough and are ready to die. This has usually been after a long period of consideration. They desperately wish to escape their current confinement, the prison of their own body. Each person has a limit, a point at which they can no longer tolerate the suffering of their situation. You can always tap out in Brazilian Jiu Jitsu training but in real life, it is not that simple.

Palace of Care – Lost

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Life-limiting illnesses are associated with many losses. Loss of control is one of the worst losses of all. As the condition progresses the losses continue to accumulate and some may be worse than others depending on each person. Things that were taken for granted are missed greatly and some of the losses can be especially cruel. Each of them is grieved over.

She loved to talk and would chatter away from morning to night, until the last months of her life. Her friends couldn’t recognise her voice when they phoned each other. Her voice sounded as hoarse as a young pop star before rehabilitative larynx surgery. Her breathing worsened and she wasn’t able to produce the volumes she was used to speaking at. As the weeks went by her voice played hide and seek and became harder to track down. Only a whisper was left, and even her family couldn’t understand what she said at times.

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Palace of Care – Doting Children

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“The Oncologist told us they would only live for another three weeks.”

“When was that?”

“Three months ago.”

“The good care you and your sibling provided kept them going. Now they are tired, and their body can’t handle the cancer anymore.”

“We are at breaking point ourselves. We can’t sleep well, and the tears keep coming.”

“You are both very close to your parent, you have looked after them well.”

“The last months had been hard, but the last weeks have been terrible. We have had to help with everything.”

“They are exhausted. Yesterday they told me they thought their time was short, that death would happen soon. I agree with them. We will get them through this, and get you and your sibling through this too.”

“The phlegm is causing them distress, and the breathing. They couldn’t relax last night. The medications helped briefly but then they couldn’t lie still. I kept awake too. They keep on asking for water, but it will go into the lung. Their swallowing is getting worse.”

“If it will make them feel better they can have some water. It won’t make things much worse but might bring them some comfort. If they developed an infection I wouldn’t treat it, as it might be gentler to die of the infection rather than dying of cancer. We’ll change the medications to make them more comfortable.”

“Please do, make them comfortable. Too much suffering already. They were always proud of their appearance but in the last weeks, no energy to do anything.”

“They’ve hated not being able to do what they want?”

“Yes, they even asked about assisted dying. They’ve always been so independent, not being able to do anything for themselves has been awful.”

“Natural death is going to happen soon, they wouldn’t make it through the assisted dying assessment process. They’re likely going to fall asleep soon. We’ll keep them comfortable.”

“Thank you doctor, can we stay here in the hospice.”

“Of course, you all need to stay here, we’ll look after you all.”

I think therefore I am? – Brazilian Jiu Jitsu as a holistic self-care practice

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I virtually attended a self-care workshop in Canberra today. I prioritise and practise self-care daily as outlined here. I still found it good to have a refresher on the importance of self-care for homo sapiens in general, but especially so for us palliative care practitioners.

The presenters pointed out the great resources available from Palliative Care Australia which have been produced by Palliverse’s own Dr Jason Mills. The downloadable PDF can help you design your self-care plan. I think all palliative care practitioners could have this as part of their personal development plans. The work we do is different, we come face to face with other people’s death and dying several times a day in clinical practice.

The session on self-compassion was another useful reminder to me, as I had completed a six-day self-compassion-focused wellness retreat three years ago. During this, I learnt to speak to myself as if I was speaking to a good friend who needed my considerate help. Our inner self-talk can be too harsh and over-critical. We are often too hard on ourselves and this can be self-destructive.

An Aotearoa/New Zealand approach to self-care would need to cover domains of the NZ Maori Health Model – Te Whare Tapa Wha. Wairua – Spiritual, Tinana – Physical, Hinengaro – Emotional, Whanau – Familial/Social. Training in Brazilian Jiu Jitsu (BJJ) has been an addition (some would say addiction) to my self-care practices and it helps me to cover all four health walls. Physical exertion has led to muscle gain and weight loss. BJJ has taught me to be more emotionally resilient and I feel I can handle more of everything. Regular exposure to the painful stimulus of joint locks and choke attempts has provided small doses of suffering. I can control myself in uncomfortable positions and it has helped with ego control. It is okay to tap out when you are beaten. I feel I have joined a family or community of practice and have befriended a culturally and age diverse bunch of people. In terms of spirituality, I feel more connected to my body as during BJJ training you have to be totally present in your body and attuned to what your opponent is doing. It can be a real escape from the daily grind of the rest of your life. If your mind wanders during a rolling session before you know it your joints might be in painful positions or your neck is being choked.

Yes, last week I did break my finger tip extensor tendon and have to wear a finger splint for 12 weeks. I returned to training this week and have been modifying my approach to protect the healing fingertip.

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…

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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