Tag Archives: dying

I think therefore I am? – We Can Only Try

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We tailor the information we give to the needs of the people we are dealing with. Everyone is different. Some will need to know as much as they can. Others will only want to know the bare minimum. Some can only listen to the positive aspects of the information. We try not to extinguish hope, but one thing that is certain in life is death. Sometimes we may have to reframe hope and even miracles. We hope that you will be kept comfortable. It will be a miracle for you to not be in pain or distress. It can be hard for people to stop having tests done. They may have had regular blood tests for many months or years in some cases. Following disease activity markers as if they were fluctuations in share prices, but with much more at stake than money.

Not everyone can accept what is going on. We will try our best to prepare people for impending deterioration and death. We want to try to prevent complicated grief if at all possible. There is no escaping the fact that a person will be dying soon. How long have they got left? We often say we don’t know. We will try to give our best estimate or our best-educated guess. We cannot predict what will happen. We try to anticipate what happens commonly. Each individual situation can be different from what is expected.

We can’t make anyone accept that they or their loved one is dying. The brain might be able to understand and accept what is going on, but the emotional heart takes a lot longer. There will be some people who will never be able to accept what is going on. For these folk, we might need to go into damage-control mode. We wish we had better news to pass on. We can only try to prepare people but sometimes we will not be successful. Some cases will be rough. We must stay calm and all tell the same story.

Palace of Care – Keeping a Promise

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In our family, our word is our bond. When we say something, we mean it. We promised him we wouldn’t take him back to hospital after his first operation. But we broke the promise because he was too unwell. He had another operation but it didn’t work out, everything fell apart. He was in too much pain. We again promised him not to go back to hospital, but then the blood clot happened. He was in so much pain, and we had to wait so long before the nurses would come to see him. We were all crying, all three of us.

He wants to go home. Even if it is just to die at home. To watch one more football game with his son. That’s all he wanted. To go back to the home that he built for us. We kept asking them to let him go home. Instead, they sent them here to your hospice. This place is nice enough. You people are all nice, but he wants to be at home and spend time with his family.

This morning he’s different. He’s lost all hope. He started saying goodbye to his house. He thinks he’s never going to get back there. He thinks he is going to die here. We had to get out of hospital yesterday. We couldn’t take it any more. We’ve broken our promise to him again, to take him home. I’ve never seen him like this before. What can we do now?

He’s really unwell. I think his bowel is blocked. I think he is dying. He might only have days left to live, but it could be much shorter. We haven’t been able to make him comfortable yet, but time is running out. We have a chance to get him home today. I’d rather he be more comfortable but I’m worried that if we don’t get him home today, he will miss his opportunity. I know how important it is to him and the whole family to get him home. We can make it happen today.

I’m going to stop the blood thinning medication, as it won’t be able to help him any more. I’d much rather he die quickly from a blood clot than die slowly from a bowel obstruction. I know how much he hates vomiting and making a mess. I know you are all still upset about what happened in hospital but I need you to focus on your husband while he is still alive. You can sort out the hospital stuff later. Right now we need to teach you how to give him injections so that you can look after him at home. All right, we need a bit of time to sort out the prescriptions and other stuff. We’re going to make this happen.

Palace of Care – Relentless Pursuit

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It’s one thing after another, after another. I’m not usually like this but over the last months I’ve been worn down. It’s too much to handle. I’m not sure I can go on any longer. I feel so terrible. I don’t think I can take much more. You know what I think is happening? I think I’m dying. I think I’m dying.

You might be right, but you’re not dead yet. You’ve had a lot happen to you in hospital. The operations, the blood clots, the infection. Nature’s been trying to take you out.

I just want to go home. I love my home. I built it myself, with my own two hands. Your place is better than the hospital, but it’s nothing compared to my own home.

Sure. We’ll try our best to get you home as soon as possible. I don’t think you’re ready yet. You only arrived a few hours ago. We need to get to work calming down your pain and nausea. I want you more comfortable before we can get you home. The last thing I want is for you to bounce back and forward between home and here. I would like to prepare you for one good discharge.

Okay, that sounds good. I just had to get out of that hospital. I couldn’t stand it any more. I wanted out so badly. It’s just too much to take. Sobs loudly

We’re going to get you through this, and your family too. We’re going to keep a close eye on you and will treat your symptoms aggressively as we know you want to get back home as soon as possible. Do you have any questions?

Palace of Care – Shorts 3

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Will another CT scan make things worse for her?

The scan itself wouldn’t make much difference. But the energy used to go out and get it would not be a good use of the precious time she has left. We only do tests if the results might change our treatment plan.

I wouldn’t recommend a scan as we already know what’s going on.

It would make it more real for us. We know what is happening, without the tests.

But she really wants it.

We can’t request scans ourselves. You’d be better off contacting the Oncologist, to ask his opinion.

How much time does she have left? Will she still be alive in two weeks’ time?

I don’t know. She might still be alive, or she might not last that long.

Is there anything else that we can do to treat her?

No, the Oncologist has tried all available options. If there was anything else available he would have done it already. I’m sorry.

We don’t want to be sitting and waiting. We want to do something.

Her time has become so precious.

Nod.

We will always be trying to do our best for your wife. And sometimes that might mean saying no to things you ask for.

Palace of Care – Shorts 2

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You’ve been very unwell.

Nod.

How’s your chest, any pain?

Shake of head.

Do you still have nausea?

It’s pretty bad.

And your breathing?

No good.

How long have you had the hiccups?

Two days.

What did the doctors at the hospital tell you about your condition?

They said it’s no good.

Did they talk to you about time?

They said it was bleak.

Nod. We’re going to work on making you more comfortable. Starting with your nausea and breathing.

Okay.

We’ll see if we can calm things down for you.

Palace of Care – Level of Detail

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When it comes to being told stuff do you want to know the full details?

Nod.

My colleague said that you want us to be straight up with you, is that right?

Nod.

What did the doctors at the hospital tell you?

They said it was pretty bad.

Yeah. What happens with Leukaemia is that one type of abnormal blood cell takes over the bone marrow. The bone marrow is your body’s factory, it makes all the blood cells. The red blood cells carry oxygen around. The white blood cells fight infection and the platelets stop bleeding. The leukaemia is stopping all of these blood cells from being made. This is really dangerous as your immune system can’t work any more, and any infection is dangerous. You are at risk of bleeding. The leukaemia cells cram up your blood vessels and they can block them off which would cause painful areas to appear.

Nods slowly.

Did they give you a timeframe?

Shrug.

Would you like me to talk about your time frame?

Nod.

I’m not sure how much time you have left. It could possibly be only days to short weeks. Things could worsen quickly and then you might only have hours to days left.

Oh.

We want you to know that we are prepared for what usually might occur in your kind of situation. If you need emergency treatments we want them to be available at any time.

Nod.

I’m sorry to have to give you bad news. If you still have important things you need to sort out, it’s better to do it now while you are still clear in the head. Better early than too late.

Points to his computer. That’s what I’m doing.

Good. What’s the most important thing to you right now?

Points to his partner. She wraps her arms around his head and cries into his hair. He clutches her arm tightly and cries into her forearm. They hold each other tight and sob loudly.

Let it all out. It needs to come out. You are safe here. We are all here to help you. We will get you through this, both of you.

Palace of Care – Deadline

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The work was different in the past week. In between clinical tasks, I worked to meet a different deadline. I wasn’t writing my own work, instead, I had assumed the role of publisher.

One of my patients had written five books and had always wanted to have them published. In recent weeks he became critically unwell and was unable to publish his books himself. Thanks to what I had learned over two years as a member of Writing In Community I started helping him publish his books using Amazon Kindle Direct Publishing.

Last week I had a different kind of deadline pressure to work under. I wanted to publish his books before he died. Every day his condition worsened. His time was running out. I still had other patients to review.

In my spare time, I worked on his books. Preparing cover pages. Adjusting blurbs. I didn’t have enough time to edit the over 1000 pages of words. It meant a few late nights and I ended up arriving for a video interview with less beauty sleep than I had intended. Would I make it in time? Would he still be physically capable of viewing his own e-books? I wasn’t sure, he was deteriorating every day, becoming sleepier and more unwell. He was dying

I converted the MS Word documents into epub books. I took my laptop into his room and showed my patient the finished products. Not a perfect job at all but good enough in the time constraints I was under. Phew!

I confirmed with him when he wanted the books to go live. Books two to five could go live right away. For Book One, the most personal one, he wanted me to wait until a month after his imminent death.

The next morning he wasn’t able to speak to me any more.

I wasn’t surprised when the month countdown started less than a day later.

Palace of Care – It’s hard enough just breathing

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“The last thing I remember was waking up early to watch the Rugby Sevens, after that I woke up in hospital,” was what he wrote using a green erasable marker pen. In between sentences he would wipe his mouth with tissue paper. A combination of stroke loss of function and rapidly growing mouth cancer led to him not being able to close his mouth fully. Saliva would pool in the lower left corner of the mouth before gravity would send a small waterfall running down his jawline. He was quite conscious of this and had already tucked three extra tissues under his chin to catch the drool.

The next sentence he wrote said, “my sister didn’t know that I did not want to be resuscitated if I became unwell again.”

“Do you mean you wish they hadn’t treated you the last time you were in hospital?”

Nod.

“Since leaving hospital you’ve stopped most of your medications. If you were to get another pneumonia would you want to be treated?”

Head shake.

“If your heart or lungs were to stop working, would you want us to try to start them again?”

Crosses his hands in front of his face, and shakes his head with vigour.

“You’ve had enough haven’t you.”

Nods his head three times.

“There’s too much going on. Your lungs aren’t working, your heart isn’t working, and you’ve had a bad stroke. Then you got a nasty mouth cancer on top of all that. Isn’t that a bit greedy of you?

Shrugs shoulders while smiling with the right side of his mouth.

“I know you are in a lot of pain from cancer and you’ve had bad nausea. Are you still wanting to have the tube feeds?”

He wrote, “It’s hard enough just breathing.”

“You don’t have to have anything that you don’t want to. Your body is so unwell that it can’t process the food, that’s why you’ve been vomiting and have had loose poos. You are struggling. I’d like to try to calm down your breathing with some medication.”

Thumbs up.

“Your family are coming to see you soon?”

Nod and half-smile.

“I’d like to start some medications for you through a syringe driver.
I’d like to calm down your symptoms over the next couple of days. Please let us know if there is anything you need. We’re going to get you through this.”

“Thank you.”

“Thank you for building our hospice.”

Palace of Care – A Good Death?

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Can a death of a person under the age of 30 ever be good?

I’m not so sure. It just doesn’t seem right. It is against the natural order of life. Children are not supposed to die before their parents. Grandchildren are not supposed to die before their grandparents. With the advent of modern medicine, three little kids are not supposed to grow up without one of their parents. Unfortunately despite all the advances we have made in healthcare, some people will still die young.

We might not be able to achieve a good death, but we can make death much less bad. We can’t take away all the sadness of a situation but we can prevent absolute devastation. We operate with a ‘no surprise’ policy, we don’t want anyone to not be aware of what is happening, especially if it is happening to them. We didn’t want their partner who has limited English to not know what was going on. One of our colleagues helped us to interpret the bad news. We could see by the tears running down his face that the message had been successfully passed on. People need to be gently made aware that their time with their loved one has become short, and extra precious.They may have important things they have not completed. It could be legal matters or relationship matters. Saying goodbye to people who have been important in their lives. Spending time with their friends and family, while they still can. Facing a difficult situation together

She spoke her last words to her mother. Her dying wish was for us to help her husband and children find a better long-term housing option. We would certainly try. We can never achieve perfection in palliative care. If it was perfect our services would not be needed at all. The person would not be dying and could go on living, that would be more like perfect.

They prayed for a miracle and did get one, but it was not the one they were expecting. Immigration services quickly processed the visa allowing her mother to spend the last days with her. They had missed each other so much, the tears ran freely down their cheeks
The little children will likely not remember their mother for years to come. Her memory will be vague but they will know that they were loved by her. They will never be able to learn the things that she was so keen to teach them. She never had the chance and other female figures in their life will have to fill in the gaps.

We all felt sadness. We all felt powerlessness. Did we do a good enough job? Yes, and some. We managed to keep things calm and comfortable. The family were left sad, but they were not destroyed. Life will go on.

Though people in the room were sad, they were calm. They looked after each other in a loving manner.

They stayed in the room for the rest of the day until the funeral director arrived to uplift the body. The family accompanied her to the hearse and said their goodbyes. Smartphones made video calls to allow overseas relatives to be present virtually. One family spread over thousands of miles shed tears for one taken far too young.

Her four-year-old played with a slinky.
Her three-year-old cried and wanted her mummy.
Her two-year-old didn’t know what was going on.

Her husband wiped his eyes dry and then shook my hand. We hugged as he said, “Thank you, Doctor.

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.