Category Archives: Practice

Breaking Chain

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This is an edited transcript of a conversation I had with Cheyne McClung, three days ago. The views and feelings expressed are Cheyne’s and he has given me permission to publish his words and photo.

The diagnosis of MND (Motor Neuron Disease). Was a death sentence. It snuck up on me. It took away things. Previously taken for granted. My ability to walk. My ability to work. Can’t hold my baby. Can’t breathe. Need BiPAP. 24/7. Hard to talk.

What did I do. To deserve this? Everyone said, “Nothing.” “It’s bad luck.” I know it’s. Not my fault. But I didn’t expect. Cruel and unusual. Punishment. MND has taken. So much. The worst is. I can’t go home. That’s where I. Want to be.

They ask me. About treatments. What if I get? Infections. What do I want? I want to live. As long as possible. To be with my. Little girl. She needs special care. Birth injury. I’m missing out. On too much. Her smiles. Trying to crawl. Chances to connect. Running out.

They decided. I can’t go home. Need too much care. They decided I need. Care facility. Hope it is. Close to home. They haven’t found one. It’s been weeks. No-one wants me. My case too. Complicated. I know that. People can do BiPAP. Without healthcare training.

They discriminate against me. I’m 37. MND doesn’t care. How old I am. Would they take me? If I was 65? Don’t get it. Care needs the same. Regardless of age. I’m paralysed. Can only move. My neck a bit. No place wants me. Hospices admitted me. For three weeks. Only. Then what? Give me hope. Then take it away. The uncertainty. Is too much. No one wants me. I’m trapped in. Too hard basket. Solitary confinement. In body shell.

Need escape plans. I don’t want to. Die. But if no. Quality of life. Then better off. Dead. I could stop eating. Not treat infections. My lung specialist. Said he could. Make me comfortable. Then stop BiPAP. All over. All done. Gone. Not yet. Only if. No quality of life.

Will anyone listen? Does anyone care? “Please. I just want. To spend time. With my baby girl. Closer to home. Can anyone help me? Please. Don’t make me beg.”

Palace of Care – Why Me?

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Photo by BP Miller on Unsplash

J: Hey man, I’m sorry for your loss. Do you have a few minutes brother?

X: Yeah.

J: Let’s go in there again. [Points to the right] You asked me why your Dad would only talk about it in your presence. I think he knew you would be able to handle it.

X: [Nod]

J: The family meeting the other afternoon was tough. Your Dad told everyone how he felt and what he wanted but the family weren’t able to listen, especially Aunty.

X: [Nod]

J: Even with all the voices raised, I heard what you said, how you advocated strongly on your Dad’s behalf. He heard it as well. You had his back, that’s why he said it in front of you first. You were really there for your him when he needed support the most, that’s something to be proud of. That impressed me, you’re a good man.

X: Thanks Doc.

J: Dad didn’t get exactly what he wanted but the gods heard his cry for help and responded.

X: [Nod]

J: You take care brother.

X: [Handshake]

I think therefore I am? – Doing the right thing

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Photo by Malcolm Lightbody on Unsplash

I’ve been time travelling in my own head in recent weeks. Why is it so important to do the right thing for me? This follows a busy month with a number of conference presentations which led to a roller-coaster of emotions. The highs of being with like-minded individuals and being accepted by my new tribe. The lows of being iced by some members of my old tribe. A time to reflect on my experience of being ‘the other’. Children do not choose where they are born or to which family they belong to. They have no choice in the matter. The process of conception is close to miraculous, two tiny collections of DNA are joined together and become an unique recipe for a potential human being. Nine months of incubation later and the accident of birth occurs.

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Palace of Care – No Surprises

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Photo by uzumaki anam on Unsplash

When I first met him he was still trying to be as independent as possible. He could’ve rung the bell and asked for water but instead, he walked to the family kitchen area to get the water himself. He refused to use the walker deigning to use only a simple cane. It took him 20 minutes to walk outside for cigarettes but the nicotine and his willpower continued to push him along. This was despite severe pain which was worsened by movement. He was determined to do things his way, the way he had always done things. Why should he change just because he had a terminal illness? He knew he was unwell and time might be short, he wanted to continue fighting as long as he could. He knew he might die but he would try his best not to. He was more worried about his partner. He had been trying to persuade her to see the counsellors but she was reluctant and wanted to concentrate on work. He was worried that she wasn’t aware of how unwell he was. He was still trying to look after her and wanted to prepare her for all possible outcomes, even the ones where he wasn’t around.

When I next reviewed him, two days later, he looked terrible. His pain had worsened, he had developed a bad headache, he was having fevers and couldn’t catch his breath. I was worried about him and I wasn’t sure if he would recover from this major deterioration. There seemed to be too much going on at once. Everything pointed towards worsened progressive disease. I talked about my concerns and that I would treat all of his symptoms aggressively. I told him that I would try my best to reverse things as much as possible but no matter what happened I would aim to make him comfortable. I offered to talk to his partner and I needed her to come in.

When she arrived I talked about what had led to his admission into hospice and updated her on his worsening situation. “Things keep on changing, the illness continues to worsen. I will try to reverse what is going on but I am worried that things might not improve. If things continue to deteriorate there might only be days to weeks left for him to live. We always work on a no surprises policy here.” He reached out his hands as he looked into her eyes and said, “I’m sorry love.” They hugged each other and the tears flowed.

I was asked back later when their closest family members came in. I met each of their siblings and their siblings-in-law. Their core support team throughout his whole illness. I shared the bad news with all six of them together. They asked about the rest of the family, some of whom were overseas. They asked, “Should we get them to come back as soon as possible?” I replied, “I’d rather people come and see you too early rather than too late. Working in hospice I see too late far too often.” They said they would make some calls.

Palace of Care – Fields of Gold

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Photo by Lars Schneider on Unsplash

I heard that he actually had children but there had been a falling out some years ago. I never found out what the details were but it sounded as if there was no way to mend these relationships. It was as if he no longer had children, it was something that we couldn’t talk about. His speech became less easily understood if the topic was raised at all. The closest family he had was his niece. She was devoted to his care and visited regularly, as she had done when he was at home.

Everything had become a struggle before his admission to our inpatient unit. We provided basic nursing care with only a small amount of medical support and he had responded well to being looked after. He accepted he could no longer live alone and his family found him a hospital-level care facility close to where they lived so they could easily visit. On the day he left our hospice for his new home, I wished him well.

Just over a month later he came back for a visit. This time he brought his closest friends and family, including his two children. I’m not sure what had happened but they were all there together. There was warm friendly chattering going on in the lounge. Food was being shared while he held court. He was in fine voice and he enjoyed entertaining everyone who had gathered. Many of his guests said thanks to him for all that he had taught them over many years, in some cases a lifetime.

His daughter had prepared a song, and decided to sing it to him while he could still hear it. She played backing music with her smartphone and sang “Fields of Gold” the Eva Cassidy version. Everyone in the room was moved by her song, as her father sang along. Sometimes healing can occur at the end of life.

Palace of Care – Travel Plans

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Photo by Joseph Corl on Unsplash

A few days before discharge he told us he wanted to go back to his hometown, many thousands of kilometres away. He wanted to see his relatives and friends one last time. He said that if he didn’t do this he would die with everlasting regret. A final visit to where he had grown up, a chance to taste his favourite foods again, in his favourite eating places. We thought he had a window of opportunity to successfully make the trip back home. We estimated that in the next months, he would become too unwell to travel. We encouraged him to make travel plans as soon as possible and offered to talk to his son. He declined our offer and wanted to discuss it with his son personally.

He said he would have to convince his son. His son wanted him to have further treatment as soon as possible. Our patient wasn’t convinced that the therapy would be effective, but he had tried for the sake of his family. The treatments had been hard to handle, with lots of side effects. If it was up to him, he wouldn’t want any further treatments, but his son still needed his support after a relationship break-up.

Over the next months, our patient didn’t go home but had more cycles of treatment. As his overall condition worsened he still talked about making his big trip home. Eventually, long-distance travel stopped being an option. The window of opportunity had slammed shut and even car trips around the country seemed too risky.

We received the news that our patient had been on a trip to another city when he suddenly deteriorated. He ended up dying in the local hospital, far from home. Making the return trip back of hundreds of kilometres would not have been easy for his family.

We wish him safe travels on his next journey.

Palace of Care – Connections

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Photo by John Barkiple on Unsplash

This afternoon I lectured on Resilient Leadership at a university executive MBA course. I spoke for 50 minutes on the leadership journey I had been on over the past nine years since becoming Medical Director. I talked about the ups and downs I have had to work through and the importance of leadership and resilience. I shared several stories as real-life examples of doing the right thing. Not the easy thing, but the right thing can be very hard at times. Declaring that you are patient-centred cannot just be a fashionable but tokenistic slogan, you have to mean it. You have to prove that you support patients’ right to choose, not just in terms of assisted dying, but other treatments and procedures, which may be invasive or have burdensome side effects. Patients and their families may need our advocacy, and support with decision making.

I allowed for 10 minutes of question time at the end and some thoughtful questions were asked. As I was wrapping up the hour-long session one of the audience members waved and caught my attention. I thought he wanted to ask a question. He didn’t have a question but instead wanted to thank our hospice for providing end-of-life care for his late brother. He said that his mother was especially grateful for the care received. A humbling moment and a reminder that the world can be a small place in which a lot of people are connected in various, often unexpected, ways.

So ends Work Day 20. I think I’ll take the day off tomorrow.

Palace of Care – Shared Decision Making

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Photo by Florian Schmetz on Unsplash

With advances in medical technology and treatments, there may be a lot of management options available. Whether any treatment is the right thing to do for the individual patient in front of you needs to be carefully considered. It may be easier to do something, rather than explaining why not doing something is the better option. It is best if a person can take part in the decision making but they don’t always have the opportunity as they may be too unwell.

He’d had many procedures and treatments over the past months. Some had been beneficial, others not so much, all of them painful. He was becoming better at saying, “No.” If it would improve his quality of life he might consider it, but if not he couldn’t see the point. He was already in a lot of pain. He couldn’t keep down his food let alone any medications. They didn’t work anyway. Maybe he had been too subtle with the doctors. They all seemed willing to help and had consulted other colleagues in the hospital to access further investigations. He wasn’t sure if he wanted them. There had been so many this year, and each of the results had indicated that everything was getting worse. He didn’t need it to be confirmed in a written report, he felt it in his bones, the deep fatigue that gnawed at him. Reducing him more each day.

Maybe tomorrow he would tell them how he truly felt. If he could get a word in…

Palace of Care – Timing

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Photo by Taras Chernus on Unsplash

Where do you think you are at?

I’m so tired, it’s no good.

What did the hospital doctors tell you?

It was always bad news. Every time they came in there was more bad news.

One thing, after the other. It would be hard to keep up.

Yeah, it was.

Did they talk about how much time you had left?

No. They wouldn’t tell us.

They fobbed you off?

Yeah.

Would you like to know how much time you have left?

Yeah, please.

How much time do you think you have left?

Not much, I feel so weak. Days?

I think you’re probably right, maybe only days, but it could be much faster if the changes continue. You had a fever last night.

My legs and tummy are swollen too. The doctors talked about something called albumin being low.

Albumin can be a marker of how well a person is, normal levels are 35, yours is much lower.

I feel better since I came over to hospice. Being able to go outside is so good, I hadn’t been outside of the hospital for two months.

Is there anything else we can help you with?

Do you guys have any Coke, in a can?

Sure, we’ll arrange for some Coke for you. Ice?

Yes please.

Just let us know if we can help you with anything else. See you later.

Thanks, see you.

Palace of Care – Special Request

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Photo by Efe Kurnaz on Unsplash

Things keep on changing every day.

Nod.

Do you know what is going on?

Yes, she is getting worse.

Yes, the cancer is getting to be too much for her. It’s made her fall asleep.

Yes, the other doctor told us yesterday.

Do you guys usually go to church?

Yes doctor, but she hasn’t been for a long time because she’s been so sick.

Would you like a priest to come over.?

Yes, doctor, we have arranged for our pastor to come over.

Will he come with church members?

Yes. Doctor, can we please have a bigger room?

I’ll see what we can do. I’ll have to talk to some of my colleagues. I’ll do what I can.

Okay.

The things that have been making her uncomfortable are going to get worse. Her breathing is going to change. She’s going to get more sleepy. She doesn’t have much time left, she is dying.

Yes, Doctor, can we please have a bigger room? We are a big family and there are a lot of us who want to come in. Do you think you can help us doctor, please.

I will get onto it right away. In the meantime I’m going to review all of her medications. We want her as comfortable as possible. She’s had too much pain causing suffering.

Thank you Doctor.

You all take care.

It took a bit of negotiation and flexibility but the patient and family were moved into one of our bigger rooms. This allowed three generations of the family to spend the afternoon together with our patient. She died short hours later in the presence of her family.