Tag Archives: end of life

Palace of Care – Timing

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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 – Limited Options

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He had felt trapped for two months. He had not felt sunlight on his skin for so long, his Vitamin D levels were depleted. The rest of his body had lost its reserves. Things had been touch and go during treatment for his first cancer, but this time around everything had been much worse. He couldn’t remember when he last felt himself. It seemed like everything that could go wrong had gone wrong. He had reached breaking point, he had to leave the hospital prison, even if it meant considering transfer to hospice.

He hadn’t had personal experience of hospice but people he knew in his homeland had given him a bad impression. He asked his wife and son to check the hospice out, to see if they would be suitable or not. They came back and have their approval, he decided to go for it. Then he had more bleeding, this held up his transfer a few more days. By this time he was ready not just to go, but to let go of life. All he wanted to was three things. To be outside and to feel grass underneath his bare feet. To taste his favourite fruit again, green apple. To eat an ice block. His digestive tract had been replaced by thousands of ulcers, gut rest had been ordered. This had been almost worse than being sick. Being ravenous but not allowed to eat or drink anything. Hunger and thirst tormented him night and day. Everything felt as black as what he had been vomiting up.

He wanted to go home, but everyone thought it was too hard. His family and the medical teams, they all thought it was a bad idea. He knew he was unstable, they had told him about how little time he had left. He had heard it all before during the treatment of his first cancer, but he had proven them all wrong. At the start of this new cancer he had been determined to fight it as hard as he had the other one. To hell and back, and then back to hell again.

That’s what it felt like this time around. Bad news, followed by bad news, followed by worse news, followed by the worst possible news. They thought he only had weeks left to live. They made him feel like they wanted him out of their ward as soon as possible. They had no treatments left for him. He was taking up a bed that someone else they could treat could make use of. Get out of here, you don’t deserve to be here as you have failed your treatments. That’s how he felt even though they had been polite enough when they had talked to him. The message in-between the lines was – you don’t belong here, please get out of our sight. You failure. You make us feel sad. Begone. Yesterday.

“Okay already, I am out of here as soon as possible.” He wasn’t 100% sure about hospice but they had sounded welcoming enough. He hoped they would help his family too. “Let’s get outta here!”

Palace of Care – Family Vigil

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I know you want to try to be with him the whole time but it is taking its toll on you.

Yes, my sons are worried about me, they don’t want me getting unwell too.

Yes, your husband would be worried about you too. He knows you have been here with him throughout this whole time. He might not be able to respond to you, but he knows you have been looking after him.

That’s what my sons and friends keep telling me too. I just want to be with him as much as possible, I think I can hold on a little longer. I didn’t get much sleep last night. I’m a light sleeper. Every time he made any sound I woke up.

Yes, you’ve been looking after him well but you look exhausted.

When his breathing changed last night I really thought he was about to die. I called my son in and he stayed with us. Then the breathing settled down and I told our son to go home and sleep as he had to work the next day. He went home at 2am. My other son is going to come back tonight.

That’s a good idea, to take it in turns. Your sons are looking after both of their parents. They can spend some time with their Dad too. If we see any signs that he is about to die we’ll call you back in, we always try our best to do so. Sometimes we don’t get any warning, but we’ll keep looking for signs.

Okay, it’s good that you will call.

Some people do wait until there is no-one left in the room before they go. That’s what happened with my Aunty. Our whole family made sure that she was never alone in the last two days of her life. She was only alone for five minutes when my other Aunty went to the toilet and that’s when she died. She was still trying to look after us all. I’ve seen it happen with so many families over the years. He knows that you’ve been with him all this time, deep in his heart he knows you’ve looked after him well. If you don’t enough rest he’ll be worried.

I’ll talk about it with my older son when he comes in later. He said he would stay tonight.

Okay, you try and get some rest.

In the early hours of the next morning our patient’s sons called the nurses in when they couldn’t hear their father’s breathing. The nurse confirmed that our patient had died. His wife wasn’t able to be with him at the time of death but she was picked up by her son and came in to help change him into his selected clothes.

Palace of Care – It’s Not Fair

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Awww Dad it’s not fair.

What son?

Nanny.

That Nanny died?

No.

What’s not fair?

The doctors.

The doctors?

The doctors. They spended more time with Nanny than I did.

Spent more time.

She stayed with them for ages at that hospice place. We had to go home every night.

You liked it there, your cousins were there too.

Yeah but they made Nanny tired, she kept on sleeping. She didn’t play with us like she used to.

You guys always had a good time with Nanny, eh?

Yeah, I miss playing with Nanny. Can she come home with us?

Yeah buddy, for a couple of days, so we can say goodbye properly.

Yay, Nanny’s coming to stay.

Palace of Care – Out of Character

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He’s been telling me off, he’s never done that to me before in all of our time together. He was grumpy and demanding. He wanted to get up and wanted me to lift him up. I can’t do that I’d hurt my back, he’s too heavy. I’m worried he’s going to fall over. He just won’t listen to reason.

Yes, I’ve noticed a big change. He was joking with us just the other day, now I can’t connect with him at all. I want you to know that he is talking strangely and it is out of his control. I don’t want you to take what he says to heart. It’s the illness talking not him.

Is it the medication change from yesterday?

I don’t think so. I think it probably is his cancer getting worse and making his liver fail. We’ll change his medication to see if it will make a difference, but it might not improve his condition.

A doctor friend told us that when people get closer to dying they become confused. Is that what is happening?

Yes, your friend is correct, that is something we see in our patients as they get closer to dying.

How long do you think he has left? Weeks?

I think he might at most have weeks. With the changes we’ve seen so far I would guess he only had days to weeks left to live. Things can change much faster as we approach the finishing line. He might have much less time than weeks left.

Our older son is taking me to the funeral director to make arrangements. My younger son is coming over but I’m not sure if he can handle looking after Dad. I’ve asked a nurse friend to come over to support my son.

That’s a good idea. I’m going to change your husband’s medications now, to see if we can get him thinking more clearly. His thinking may or may not clear up, no matter what happens.

Palace of Care – Gasp

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I received the news by email that a brave young lady had died overnight. Before opening the email I knew what it meant. Opening the missive confirmed the bad news. I still gasped a jagged breath in when I read the words. Even after 16 years of full-time palliative care some cases affect me more than others. A good reminder that I am still human. I still feel sad about some cases. I can’t feel too sad though or I wouldn’t be able to carry on. I need to be strong enough to handle the next cases that will come my way. I can’t fall apart after each loss. I allow myself to grieve a bit for each death. I obtain closure. Things would have been much worse if I hadn’t been involved. I have made a difference. I have done enough.

The care I provide can never be perfect. If it was a perfect world my patient would not be dead, they would be alive and living the rest of their lives. Her life was cut far too short, she barely had time to become an adult. I’m not sure if a good death was achieved, but I know that it was much less bad than it could’ve been. There will be tears, even I feel myself blinking some back. Bloody hayfever. Could you go and cut those onions somewhere else please?

I informed my team of the death through our online chat group. I also let them know that I feel sad, that the most experienced member of the team feels sad about this case. That it is okay to feel sad. We’re humans, we know something about loss, it’s okay to feel our emotions. It’s okay to do some extra self-care when we need it.

The other day she wore a vintage Spice Girls t-shirt. I had asked her, “tell me what you want, what you really really want?” We had laughed together and talked about her toys. Her vintage Care Bear, her pillow pal, her Squishmallow. There were no Beanie Babies, yet.

Goodbye brave young lady, safe travels.

Palace of Care – Noisy Neighbour

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Her room is across the corridor from my office, the big family room in our inpatient unit. I keep my door open to allow the air conditioning in on hot summer days like today. The temperature is not high compared to a lot of areas but the humidity level makes everything feel much hotter. I am sensitive to sound and noise which is why I usually keep my door closed as I become easily distracted. From the room opposite to mine many waves have vibrated through the airspace between us leading to electrical stimulation of some of my nerves and registering as different activities.

I have heard laughter at least 20 times. There has been a constant hubbub of active conversation in the background, I cannot discern what words or even what language is being used but I can tell from the tone how connected the people in the room are. I have heard the cries of a little baby. There are toddlers talking to their uncles, aunties and grandparents. Older cousins are hanging out with each other during an unexpected day away from school. Was that  guitar I heard just before? I haven’t heard them sing yet, but I am sure they will at some stage. I have heard new visitors being greeted enthusiastically, the sound of people hugging with many kisses to cheeks. A lot of people have brought food.

I am the most distracted in the hour before lunchtime. Over the last two years of intermittent fasting, 11 am is one hour before I break my fast. From my neighbour’s room I can hear and sometimes smell  people sharing food with each other. A shared family meal can be a difficult logistical exercise in the adult life of New Zealanders. Where to meet, how to meet, when to meet, what kind of food to bring? All of these questions require answers and solid plans in order to make things happen. From my position it sounds like my neighbours are having a good time. The warmth in the room is not just the ambient temperature but it represents the shared feelings of love. The people have gathered because their loved one has needed them.

My patient is dying  and there is nothing we can do  to stop it. We have tried over the past week. We stopped medications that were no longer helping. We hoped her deterioration was due to medication side effect but it wasn’t. Was it a reactive depression to the bad news she received two weeks ago? We started her on a fast-acting antidepressant  but it made no difference. Last week I said hello but she didn’t answer me.  The dullness in her eyes told me everything . Time would be short. She was not going to make it home ever again, her family would have to bring a bit of home  into her hospice room. I can hear upbeat music being played in the language of her family’s place of origin.  Now it’s Josh Groban’s You Raised Me Up.                                                                                       
“I am strong, when I am on your shoulders…”

Even after working 16 years full-time in palliative care the stark contrast still hits me. My patient is dying in her room but she is surrounded by so much life. Her little baby, who is vocalising a lot, is in there with a lot of the people who will be bringing her up after her mother dies. Another tragic case but life will go on, another case where we have made a difference.

Palace of Care – Sitrep

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You didn’t have a good night?

I couldn’t fall asleep, I can’t remember the first part of the night. Then I had pain, they gave me pain relief and it helped. Then I slept for a few hours.

My staff told me you had trouble swallowing your medications.

Yeah, it took a while but I was able to take my morning pain medication. It was good they changed the other medications to liquids.

I don’t want you to end up in pain if you can’t swallow your medications. I’m going to switch your medications to injections so you’ll be able to get all your medications without needing to swallow them.

Okay.

Have you had nausea?

I did but it was okay after the medication they gave me.

My team said that you wanted to talk about assisted dying. Do you want to talk about it with me?

Yes, please.

I need to tell you what your situation is. Do you want to know how much time I think you have left?

Please tell me everything.

I’m worried about you. I think things are changing fast. If changes occur over months, a person might have months left to live. If changes occur over weeks, they might only have weeks left to live. I’m worried because changes have been occurring over the last few days, which makes me think you might only have days to short weeks left to live.

Oh?

I don’t think you have enough time to go through the assisted dying assessment process which usually takes at least a week or two. I don’t want to waste your precious time doing something that isn’t going to help you.

Thank you.

Do you have any questions you want to ask me?

No, you’ve covered it all well.

Okay, I’m going to change your medications now. Hopefully, you’ll be more comfortable soon, before your kids come in. I’ll see you later.

Thanks, see you later.

Palace of Care – Operational Success?

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Our patient was reviewed by the surgeon in our inpatient unit. It was kind of the doctor to see him at our hospice. Our patient and his wife were able to discuss everything with the surgeon and he left them to think about the proposed operation. They talked about this with a number of our staff and then discussed it with me. We went through all the possible benefits and risks and we decided together that they would like to try the operation.

The operation would involve removing a specific part of the spinal cord in order to disrupt the nerve pain from being transmitted.

The operation went as planned and our patient recovered well from it.

We were expecting him to come back to our inpatient unit for a period of rehabilitation but he was good enough to go directly home.

The operation had successfully controlled his nerve pain, and we could reduce his medications a lot.

He was well enough to go to his holiday home for some weeks in the summer, something he had thought he’d never be able to do again.

Physically his pain was well controlled but the non-physical aspects of his pain remained. The existential and emotional distress were not improved at all, in fact they might have worsened. A common side effect of the pain relief medications he had used was drowsiness. Now that he didn’t need as much physical pain medication he was less sleepy, and had more time to think. More time to think about the grimness of his reality.

Unfortunately our proud patient had refused all input from mental health services or counselling. The idea of talking to people about his feelings was an alien concept for this self-described working class man. He just couldn’t discuss these things with anyone, it was a step that would always be too far for him to ever take.

I was called by the staff of the local hospice which covered the area where his holiday house was. They had been asked to call me for my opinion on what they should do in regards to further treatments of life-threatening infection. Knowing the man as well as I did, I didn’t think further treatments would be helpful. He was miserable and staying alive longer to be more miserable would not help him and would only prolong his suffering.

Psychologically he continued to shut down and withdrew from the world. He died at home after being well looked after by his devoted wife with the assistance of our visiting staff members.

Palace of Care – Desperation

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After a week with us things had settled down. Pain was better controlled with more effective medications. His skin was well on its way to healing. Our patient had become bored, and had been watching more online streamed content to pass his days. A joint decision was made between our patient, his wife and our staff. He would be discharged home with extra home supports arranged. His wife was confident that she would be able to handle things at home. Our community hospice nursing team would restart his home visits. Over the next weeks small adjustments were required for his medications otherwise everything else was controlled.

Two months later and the nerve pain which had shot down his legs, intensified. Side effects of his medications became a problem at higher doses. We needed to try something different. He was re-admitted to our inpatient unit for symptom control. We increased his doses with only mild pain reduction but a marked increase in side effects. He lost his lucidity, drifting in and out of sense. This distressed him more than the pain did. For someone who had prided himself on his intellect, losing access to it even briefly was one of the worst of his fears made real. To be unclear in his thinking was torturous, what he was most afraid of. Not being able to understand or communicate he felt trapped in the prison of his body.

We had to come up with something different. We consulted our colleagues across the region including pain specialists and neurosurgeons. An operation was proposed, and preparations were made. No guarantee of success. We felt almost as nervous as he and his wife did but we had to do something.