Palace of Care – Low Affinity

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Anything you eat or drink might come back up again.

No, it has been coming back up already. What’s going on?

You’ve got a blockage in your bowel. It acts like a roadblock. If it can’t get through the roadblock things go back up. We can try to loosen up the roadblock with bigger doses of the steroid medication that was started at the weekend. It may or may not work but there may be side effects.

Like?

You might see the psychedelic lights that you saw the other day. That was scary for you. The steroids will worsen your immune system, making it harder for you to recover from the pneumonia which has come back.

Why is this all happening? I don’t feel well, no energy at all. Is the cancer progressing?

Yes, the cancer is getting worse and causing new problems. A bowel blockage and pneumonia at the same time is a serious and dangerous situation. I’m not sure if you’ll recover. We can try increasing your medications to see if they will help. Would you like that?

Yes. Do I need to get another scan?

No, we know what is going on already. A scan might confirm that but it wouldn’t change our management. We’d only do tests if the results would change what we do, otherwise, it wouldn’t be a good use of your time.

So all I can do is sit here and wait?

You can do whatever you feel up to doing, but I don’t want you putting up with pain.

I don’t have any pain.

Or discomfort.

I don’t have any discomfort.

Apart from your back and tummy. You also feel exhausted.

Well, yes but it’s not too bad.

Okay, we’ll work on making you more comfortable, we’re going to adjust your medications now.

The nurse said she’d take me out to the garden.

That’s a good idea, it would be good for you to get some fresh air and sunshine.

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 – Checking In

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How’s your pain today?

It’s not bothering me. It’s my tummy that is uncomfortable. I feel like I need to poo but it won’t come out.

Okay, it’s good that your pain is better controlled. We’ll have to work on your poos today. What else is troubling you?

I’m just so tired. Don’t have energy to do anything. I can’t even get out of bed.

Yeah, they told me you hadn’t been out of bed for a while.

That’s all I want to do, to get better so I can get out of bed and walk around a bit.

Okay, we’ll keep on trying to make you more comfortable.

Should I go for the radiation treatment?

How did it go the last time you had it? Did it help your pain?

Yes it did. Do you think it will help me this time?

Maybe it would, if you’re feeling up to it you might as well get it. It might help your pain more.

Okay, thanks Doc.

You’re welcome. Do you have any questions?

When can I go home?

If you keep on improving like you have, maybe after your radiation treatments. Give you something to aim for.

Okay. You’ll remember to help me with my constipation right?

Sure will.

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.

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.