Tag Archives: dying

Palace of Care – Waiting For?

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Was he waiting for his brother to come and visit him?

Despite trying his best he couldn’t come as his visa was not granted. The best they could do was to arrange a goodbye via video call. Not in any way a replacement but better than no contact at all. The too common experience of extra suffering caused by geographical distance. The brutal trade-off that all immigrants have to face when they leave home. They move in pursuit of a better life for themselves and their families. The costs of separation might have been considered but do not sink in until tragic events occur. An ocean away can feel like a galaxy away. The unfulfilled wish of being there in a time of need. Reunions depend on the whim of bureaucrats who, at times, are felt to be heartless, lacking in empathy and disconnected from the human race.

What was different in the past week? How did he hold on? Why?

During his dying phase, he had spent more time with his ex-wife and daughters, than he had in many years. One of his biggest regrets was not spending more time with them before he had become unwell. The events preceding the divorce had stuffed it all up. During his final admission, there was always someone staying with him, 24 hours a day. A sensible roster had been set up between his wife and daughters as they held their combined vigil. Was he trying to extend his precious time with his ladies for as long as possible through sheer willpower? Maybe. He was beyond asking. We could never know for sure.

He died last night, in the presence of his family. He had outlived our prognostication by many days.

Rest in Peace Sir.

Palace of Care – Healing in the Hospice

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I’ve had relatives who’ve come in before but they never made it out, they died after a couple of weeks. When he was asked to come in we were pretty nervous, we didn’t quite know what to expect. Yeah, we were scared. We had to do something though. His tummy pain was real bad, but it was his anxiety and panic attacks that were the worst. He’d freak out and I didn’t know what to do. I’d freak out too. His pain was controlled after a couple of days in hospice, then his panic attacks settled down. This was despite having received the worst news ever, that he had cancer.

We didn’t know they were looking for cancer during the last three months. We thought they were trying to find out why he was constipated. We didn’t know why he had lost 30kg of weight. He had always loved food but then he had no appetite. The poos kept on changing, sometimes hard, sometimes soft, sometimes with blood. They stuck a tube up his bum to have a look but they had to stop because the sedation they gave him almost killed him. It was a shock when the hospice doctors told us that the other doctors thought he had cancer.

The other great thing about being here in the hospice is that it is neutral ground. It was safe for him and his ‘niece’ to meet up here. You allowed us to have some space and they were able to start talking. Yesterday they ended up just going to a cafe together and they sorted out the issue between them that had kept them apart for decades. He’d done some stuff in the past. He’d done his time. Coming here to hospice allowed them to heal. Deep healing of the spirit happened yesterday. He came back a changed man. A father and daughter were able to connect with each other, to start to build a relationship that had been broken for years. It was good for the grandchildren to see this happen. It’s good for the whole family. We couldn’t have done it without what you have provided us here. It means so much to us. Thank you so much.

Palace of Care – Breaking the Circle

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I felt that the hospital doctors wouldn’t give me a straight answer. They kept on going in circles. I had to pin one of them down and asked him how much time I had left. I needed to know as I have important stuff I need to sort out.

What did the doctor tell you?

He said I had two weeks left to live.

How long ago was that?

Two weeks ago. Now I don’t know what’s going on or how much time I have left. I just want people to be honest and direct with me. I can handle it. That’s nothing compared to the pain I’m putting up with in my leg.

I’m not sure how much time you have left, it could be only weeks, but…it could be much shorter if things get worse quicker. I’m worried about you. You have two separate cancers which have put great strain on your body. Your kidneys haven’t been doing well. All of this has made it hard for your body to heal. That’s why your leg wound has been getting worse.

It leaks so much. It just soaks through the pads. We have to keep changing them. I have to position my leg so the liquid will drip away from me. If I don’t my clothes and everything else would get wet.

There’s a risk that your leg could develop an infection which would put you in danger of dying. If this was to happen would you want to go back to hospital for treatment?

What’s the point? Would they be able to do anything for me?

Probably not and I think they wouldn’t be able to take care of your pain as well. I know they’ve tried lots of different medications over the last weeks. Have any of them worked?

Not really, the pain builds up until I can’t handle it. I end up grabbing the arms of the chair while I grimace. The hospital doctor saw me during an episode and she didn’t know how I could handle the pain.

Sounds awful. We made some changes yesterday afternoon, did you notice any difference to your pain?

To be honest, no I don’t think so.

I think your pain will be hard to control. We will keep on trying and will use bigger doses. There is a chance that the medications might make you more sleepy. Would that be okay with you?

If you can control the pain that would be better, I haven’t been able to sleep because the pain has been too bad during the night.

There’s a chance that we might not be able to control your pain no matter what we try. If we can’t control your pain then I would give you stuff to make you less aware of the pain. It would make you sleep. I would only use that as a last resort if everything else failed. If I can’t control the pain I won’t let you suffer.

Good.

Do you have anything else that you still need to take care of?

I’ve already planned my funeral. I have funeral insurance which will pay for it. There are only a few small things I need to sort out with my lawyer.

Better get onto these things. I’d rather you do it too early than too late.

Do you have any questions?

No, you’ve covered everything.

I’m going to start slamming your pain hard because I want to try to bring it down as fast as I can.

Thank you.

You’re welcome. See you later.

Palace of Care – He’ll Be Right Mate

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I didn’t know what to do. He tried the spray and it helped his breathing and panic a bit. Then he needed it again and again. He wanted to call an ambulance and go to the hospital. I didn’t think that would help much. They might’ve taken him to hospital and then eventually back to the hospice.

When he couldn’t catch his breath he freaked out. He started panicking. He was too scared to go to sleep. He was scared he was about to die. I’ve never seen him so scared. I stayed up with him through the night. We’re both pretty tired.

He’s felt safer since coming back to hospice. He’s more comfortable because there’s always people who know what to do. I didn’t know what else to do. I’m not sure if I could handle giving him injections. It was stressful at home.

I just want him to get better. If his breathing was better then he wouldn’t panic. Maybe then he could get to sleep at night instead of during the day. He went outside and felt a bit better in the cold. Having the window open helped.

You can make him better right? If you get the right medications then he will be back to normal again. Then everything will be fine. Just have to get the right medications, then he’ll be right again.

Palace of Care – The Last Dance

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Thank you for taking him home, that would’ve made him really happy.

As soon as he got home he wanted to go back to hospice. He really likes it here. When he was last here he was dancing with the nurses and singing as well.

How did it go at home?

It was hard. He didn’t know what he wanted. Things kept on changing quickly. We couldn’t cope with him at home. He was very confused at times and demanding and angry.

Unfortunately, the people you are closest to can be treated the most harshly when people are very unwell.

Is he in a coma?

Yes.

But he’s still able to move at times, and he opens his eyes but doesn’t really interact.

Yes, that can happen. He is deeply unconscious but may still be able to move. At other times he might be more wakeful, with lots of ups and downs. This is normal for dying people. He might have only days left to live, but it could be much shorter. No matter how much time is left we will try to make it as comfortable as possible.

Thank you.

Palace of Care – Time Is Short

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I don’t think she has much time left.

I think you’re right. She has deteriorated a lot, even overnight.

She tried to talk to us around 4 am, she recognised us but went back to sleep. I think she can still hear us.

I think so too. She will be comforted by hearing your voices. To know that you are looking after each other. Otherwise, she will worry.

That’s my sister, always worried about everyone else. She was starting to get confused in the last two days.

That can happen when you are really unwell, we see it all the time. We’re going to make some changes to her medications to calm everything down. I want to keep her calm and peaceful like she is now.

Good, that’s all we want.

We’re going to get her through this. We’re going to get you both through this as well.

Thank you.

That’s why we wanted to give her some more time here. She’s in the right place, we are going to look after her. You two need to be the family members now, let us do the caregiving.

Okay.

Please get some rest when you can and let us know if you need anything.

Palace of Care – And Then There Were Two

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He didn’t want his wife to be admitted to hospice. She had been ready but he was scared. We had offered admission a few days prior but he had said no. They agreed to come and have a look at our inpatient unit.

On arrival, they realised there was nothing to be scared of and agreed to stay for a symptom control admission. The pain had been worsening and the wife had been reluctant to take any medication as she was worried it might worsen her liver impairment. They liked the safe room we had to offer, and were happy to stay.

Over the next month, our patient only left her room to have investigations or procedures done. We encouraged her to spend at home and we would hold her bed but to no avail. She didn’t think they would cope at home. The thought of leaving our place freaked them out.

Everyone was saddened by her death, none more so than her husband. After we farewelled her, he thanked us and said that if he was dying he would want to die at our place as we had looked after his wife so well.

Palace of Care – Being Wrong

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As doctors, we are trained to make our best attempt at diagnosis and prognostication. We gather as much evidence as we can to support our theories or disprove them. We try our best to get as clear an answer as possible. We pride ourselves on getting things right. We may check things a number of times just to make extra sure as we don’t want to get things wrong if we can help it.

Working in palliative care I don’t mind getting things wrong and sometimes I wish I was wrong more often when it comes to prognostication. The clinical examination findings are considered along with recent blood results. A picture is put together and discussed with the rest of the team. I thought I knew what was going on. The patient and her husband held on to whatever hope they could. Some blood results had improved, and others had worsened. They wanted more investigations and treatments. I thought they had run out of things to have done. They hoped I was wrong. I hoped that I was wrong.

Unfortunately, I was right – The latest scan result came back and showed widespread progression of the disease.

Damn It!

Palace of Care – No False Hope

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I couldn’t provide them with what they wanted. It felt like every time I went in there I had more bad news to share. They wanted me to say something different. They wanted me to suggest other treatments and other tests. I had nothing new to offer. All the stones had already been turned over. They were willing to take even false hope, but I was an unwilling vendor. I didn’t want to burst their bubble, but I felt like I needed to.

They had tried everything humanly possible to stay alive. They had pushed for tests and treatments and they had managed to keep going for years longer than most people. The more lines of cancer treatments you go through the lower the likelihood of success. They were up to the final line of treatment. Treatment could not be provided without significant side effects occurring. A difficult balancing act. A costly negotiation to take part in. A trade-off had to occur.

If it was all about effort expended they would have lived for many more years. They had tried harder than most people could have. After years of triumph, they were finally faced with their ultimate defeat. They wanted to stay active, to continue doing something. They didn’t want to just wait for death. There was nothing else to be done. The best treatments we had might’ve improved comfort and quality of life, but could not affect the quantity of life. The limit of Western Medicine had been reached.

Palace of Care – Preparations

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She said she had prepared herself for death several times over the past few years. She still wanted to try to live for as long as possible but if it was not to be she could accept it. She would try to sleep, try to eat, try to enjoy what she could of this life. Her brain knew what to say. Her emotional heart at times was speechless. She didn’t want to give in to the despair, but at times she wasn’t so strong. At times she wasn’t so sure she could accept things. There was so much she could not do. So many unfulfilled dreams. Too many disappointments.

Recently she felt exhausted, not because of the usual missed meals and poor sleeping attempts, it was much deeper than that. No matter how much sleep she had, she woke up exhausted.

Despite all of the above, she was more worried about her husband and how he would cope.