Category Archives: Clinical

Palace of Care – Sitrep

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You didn’t have a good night?

I couldn’t fall asleep, I can’t remember the first part of the night. Then I had pain, they gave me pain relief and it helped. Then I slept for a few hours.

My staff told me you had trouble swallowing your medications.

Yeah, it took a while but I was able to take my morning pain medication. It was good they changed the other medications to liquids.

I don’t want you to end up in pain if you can’t swallow your medications. I’m going to switch your medications to injections so you’ll be able to get all your medications without needing to swallow them.

Okay.

Have you had nausea?

I did but it was okay after the medication they gave me.

My team said that you wanted to talk about assisted dying. Do you want to talk about it with me?

Yes, please.

I need to tell you what your situation is. Do you want to know how much time I think you have left?

Please tell me everything.

I’m worried about you. I think things are changing fast. If changes occur over months, a person might have months left to live. If changes occur over weeks, they might only have weeks left to live. I’m worried because changes have been occurring over the last few days, which makes me think you might only have days to short weeks left to live.

Oh?

I don’t think you have enough time to go through the assisted dying assessment process which usually takes at least a week or two. I don’t want to waste your precious time doing something that isn’t going to help you.

Thank you.

Do you have any questions you want to ask me?

No, you’ve covered it all well.

Okay, I’m going to change your medications now. Hopefully, you’ll be more comfortable soon, before your kids come in. I’ll see you later.

Thanks, see you later.

Palace of Care – GPS

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You are the driver, not me.

You’re in charge.

I’m just here to help you.

Think of me as your GPS.

I’m here to guide you.

To try to make your journey as smooth as possible.

I’m going to show you what is up ahead of you.

I’ll do my best to anticipate the dangers or obstacles to come.

I’m going to present you with options.

I will make my recommendations but it is up to you which path you want to take.

I will listen to you, so please tell me what you want, what you need.

I will help you get through this journey, and your family too.

You’re the driver.

It’s all about you, not me.

Palace of Care – Operational Success?

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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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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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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 – Where There’s a Will

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Willpower can be like a superpower for some people. Through sheer force of will they can make themselves stand up from their deathbed and walk to the toilet. I’ve witnessed people hold on until the arrival of overseas relatives. People who I can’t explain through physiology how they could still be possibly alive two weeks after they had any oral intake of food or fluid. What hidden reserves do they draw upon to sustain themselves? I don’t know, I can’t explain it with science. There is still much we do not know.

Let the force be with you. Well, it certainly is with some of my patients. The sheer force of determination. Or is it love? Or faith? People can hold on to life despite the worst of circumstances. Viktor E. Frankl and others could survive concentration camps because they had something to continue living for. What if you do not want to live any longer? What if life is full of pain and has become unbearable? What if you spent your whole life in control but have lost control at the end of your life?

I’ve seen many former professional people who had spent their careers in charge of people, struggle when they have lost control. They included school principals, charge nurses, managing directors, coaches and military leaders. They had guided their staff through difficult situations but had trouble guiding themselves through their final situation. The existential distress of dying caused them much suffering. Some of them would’ve requested an assisted death if it had been available to them. Some people will try their hardest to die and may wake up disappointed each morning they survive.

I’ve watched feeling powerless as people put as much effort as possible into dying naturally. They willed themselves to stop living and expended many hours in distress when it didn’t work. As in the rest of their lives when they wanted to achieve something they had pushed as hard as they could. Striving with the full force of their will to grab onto something that would take them away. Losing their last shreds of patience and sometimes shaking their faith, they kept trying harder and harder, beyond exhaustion.

Until.
They.
Finally.
Let.
Go.

Other people, like my patient from Europe, could let themselves go. They may have said their goodbyes to the people they needed to. They might have had one last family reunion or spent one last night with their loved ones. They did what they needed to, finished their business, and then relaxed and let themselves drift away. To sleep perchance to dream.

Palace of Care – Alien State

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He had always been active. Busy at work, busy at home. He and his brother had emigrated from Europe over 50 years ago. They came to seek a new life in New Zealand. They both married local women and raised families. Both of them had remained active in their elderly years, especially our patient. He spent a lot of time in his garden when he wasn’t playing soccer with his grandchildren. He did not handle being sick well.

The constant fatigue troubled him the most. Not being able to do what he loved. It was as if the weeds could tell they were safer with him less active. They quickly took over the garden. His lawn had dandelions growing in it for the first time, they usually did not survive long enough to flower. The lawn was where he would play soccer with the grandkids. He wasn’t able to play any more and the ball would’ve been slowed down by the wild chaotic weeds. He could not get used to his new situation – inactivity.

He hated being unable to do what he wanted. Being forced to sit down after the shortest of walks made him feel useless. The indignity of having to be pushed around in a wheelchair was the worst. He thought everyone was staring at the old man in the wheelchair. Old and frail was how he felt, words he thought would never be associated with him. He didn’t want to live if he couldn’t be independent. Back in Europe, he would not have to go through this torment. If he was a citizen there he could request assisted dying, but New Zealand’s law change was still many years away.

The hospice staff had given him more bad news. They thought he was too frail to live at home. It was recommended that he be admitted into residential care. Away from his wife and his house. Living with a whole bunch of elderly strangers to him meant a severe loss of privacy. It would also cost a lot of his hard-earned money. All the sacrifices he had made to save money, buy his house, raise his children, and spoil his grandchildren. Cheese and onion sandwiches for lunch every day at work for forty years. He could not take it any longer. He had always been what he called determined, and what his wife and brother called stubborn. He knew what he had to do before things got even worse. His family would understand. Eventually.

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 – 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.

I think therefore I am? – Grief and Loss

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In a conversation with a grief counselling provider the other week we talked about the grief process not just occurring after a person has died but occurring during their final illness. The person themselves will grieve over the losses they experience as they become sicker. The parts of their self that die as worsening health takes its toll on a person and their loved ones. This may include loss of the many roles that people have in life. A big one is the loss of employment, not being able to work can affect people deeply, especially if work plays a big part in who they are or represents why they are. Not being able to contribute to society can be a huge loss and a damaging blow to a person’s sense of wholeness.

Loss of roles in a family can have a huge impact. If the main carer becomes unwell it can put a great strain on the other family members. Who can be called in to help with Grandma, now that Mum is unwell? The other members of the household might need to learn how to cook and clean amongst family tasks that seemed to be taken care of as if by magic. The clothes don’t jump into the laundry basket by themselves. They pour themselves into the washing machine with just the right amount of washing powder and water. The teleporter doesn’t work any more, the smelly socks that are thrown at the laundry basket go for a swim in the washing machine. Then they grow legs and somehow jump onto the washing line to work on their tan. Once all traces of liquid have been removed the items of clothing practice yoga, contorting themselves into origami configurations all the better to line drawers with. This whole process may become much less reliable when a family member is unable to help out with house hold chores.

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