Palace of Care – And Then There Was One

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Sometimes when situations feel stuck a nudge may be required. A change in mindset or plans may be necessary to escape limbo. Patients who may have been in relative stability might be prepared for discharge. Things cannot continue as they are. Normality can only be paused for so long. Children continue to grow up. School holidays start and finish. Jobs have to be worked. Life has to go on.

We had expected her to deteriorate within days. No one could have predicted she would be alive for weeks let alone enjoying some form of quality of life. She had outlived all prognostication attempts by many weeks and almost months. How? Fantastic support from family and friends. Good palliative care was directed by her wishes. We had promised to listen, to allow her to be the driver. We had kept the promise. To continue her steroid medication while she still enjoyed quality of life, as defined by her. We would wean the medication off if it wasn’t working any more if intolerable suffering occurred, if she was dying.

She made the most of each day. Eating food, drinking her husband’s coffee, and having visits from friends. Visits home for family meals and her favourite drinks including world-famous beers and gins. The four-legged family members had missed their mother so much. She enjoyed time in our garden and often caught some rays in the courtyard. Solid plans were being made for longer, overnight leaves at home. Her husband had been trained to deal with problems that might crop up at home. Everything was being prepared for more time at home.

We had stopped being surprised by her long lack of deterioration. When the final deterioration occurred it came as a shock. A slight cough turned into a likely chest infection. Her swallowing ability had fluctuated markedly over the past weeks. A mis-swallow had allowed food or drink to be breathed into her lungs. This aspiration led to pneumonia. We offered antibiotics and hospital admission. They knew she didn’t want to go back to a hospital, a place of great stress for all of them. No antibiotics, thank you.

When it was clear she was dying they wanted to take her home. They were willing to accept the risk of dying en route as they knew she wanted to die at home. Mission accomplished. She spent her final hours with her family, furry ones included. Mixed in with the many tears of sadness were some scant droplets of relief. She was here until she wasn’t.

Rest in peace dear lady.

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 – 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 – 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 – Easter Face/Off

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Easter was about to arrive. At the last minute, I asked my wife and daughter if they had bunny ears I could borrow. They replied yes but they were unable to or me. Just like an Easter Egg a cunning plan was being hatched. Leftover Christmas decorations were examined and a pair of antlers were found. With the addition of cardboard, staples, and a hair tie, bunny ears had been produced out of thin air.

I wore the bunny headband for my whole workday. Anything for a laugh. The patients and their family members bore witness to my madness.

Later in the day, I met the son of one of our patients. He didn’t have clown makeup on and was of a serious demeanour. Facial tattoos adorned both cheeks. A proud member of one of New Zealand’s infamous gangs. We were both in the room because of the patient. Both of us trying to do the best for him. I tried my best not to stare at his facial tattoos. He tried his best not to stare at my bunny ears.

“Happy Easter,” were the first words I said to everyone in the room. Reading the logo tattooed on the son’s cheek I found out he was a member of team blue. I’d had a number of dealings with various members of this gang in the past. He stayed outside of the room but popped his head through the open window. I spoke to his father to see how I could help. Pain, nausea and hiccups were the main issues troubling my patient. He knew he was critically unwell and agreed with my plan to calm down his symptoms. His wife couldn’t keep a straight face as she tried not to laugh at my bunny ears. On that lighter note, I left the room.

A few minutes later our charge nurse had to go back in to talk to the patient’s son. He was smoking cigarettes on the balcony outside of our patient’s room. She asked him politely to stop smoking as it was a health and safety risk as our balcony is wooden and at risk of fire. He put out his cigarette without any comments or fuss. We have rules we have to comply with otherwise we’d be shut down.

We look after all sorts of people from all sorts of backgrounds, and all sorts of families. Even hardened criminals can be vulnerable when their loved ones are dying. They need to be treated with compassion and professional courtesy regardless of our own personal opinions. They want our best professional opinions when they meet us at work.