Category Archives: Ideas

Palace of Care – Limited Options

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Photo by Marina Grynykha on Unsplash

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 His digestive tract had been replaced by thousands of ulcers, gut rest had been ordered.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 – My favourite question

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How did you meet each other?

My friend was going out with a girl who worked at a  shoe shop. One day he asked me to meet him at the shoe shop. I waited outside for him and then the other girl who worked at the shop was sent out. She had been told that there was someone outside who wanted to meet her. That’s how we met and we’ve been together ever since. We became soulmates.

That’s cool. You met her when she was working at a shoe store and you became sole-mates.

Palace of Care – What do you think is going on?

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The hospital doctors said I was very unwell, and that they didn’t have any treatments left for me. They said I might not have much time left.

Did they say how much time you had left?

Two months, maybe a year.

What do you think?

Nah.

You think you have more time?

Yeah. I’m trying the other medicine from the islands. I’ll see if it helps.

Which one is that, the white stuff?

No, the other bottle.

Oh that one. $40 a bottle. How long have you been taking it?

About a month.

What’s it taste like?

Sour. Yuck very sour.

Not as good as the Ribena?

No, I take Ribena afterwards to get rid of the taste of the medicine.

What is it? Is it from your island?

I don’t know, it’s from my partner’s island.

How long have you been together?

18 years.

Where did you meet?

Over here.

How’s your pain?

Okay.

How would you score it out of ten? Zero being no pain, ten being the worst you’ve ever felt.

It’s not bad just a 7. When it is real bad it can go up to 10.

Does the pain medicine help?

Yeah, I think so.

How low does it bring the pain down?

To about 5 or 6.

Does it ever go down further?

No.

How about when you were in hospital, they tried some different medications for you. Did they help?

Nah, it didn’t make any difference.

Okay, we’ll need to try something different as your muscles are twitching.

Why is that?

It’s a side effect and it’s telling us you have come up to your maximum dose with that medication. We need to switch it to something else. I’m hoping it will help your pain more with less twitching.

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 – Mystery to Solve

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I was in my office and I heard the sound of people crying including children. I wasn’t sure which direction it came from, was it in front of me or behind me? The young mother or the older mother? Or was it the grandmother? Three ladies who were all dying in our hospice, had all outlived their prognoses. Prognostication is our best attempt at an educated guess, we are often wrong. That was the case with our three ladies, they were holding on, doing things in their own time. Who had just died?

Listening more closely, there seemed to be many different cries. This ruled out the grandmother who did not have a large family. The other two families were larger. Was it the mother of two or the mother of five? Both patients and their families had spent the last months in and out of our hospice inpatient unit. Both families had initially resisted coming into hospice due to fear of the unknown. After spending weeks with us both families had also been nervous and reluctant about taking their loved one home. They had become scared of leaving a place where they felt safe. Both ladies had successfully made it back home and had spent long periods at home.

When each lady returned it had been in similar circumstances, a deterioration in overall condition, with confusion and agitation prominent. Husbands were stressed out, as they had to take over the running of their homes. Their wives had previously run their households, now the husbands had to take over and they found the job to be harder than going to work. So much to do in so little time, dropping off the kids at their schools and picking them up afterwards. Household chores wouldn’t take care of themselves. They wanted to give it a go before evaluating the need for home support.

I was still unsure, I would have to venture out of my office to get more information.

Palace of Care – Guidance

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“This will be a challenge,” was my first impression when I first met the son. His eyes were on the brim of tears, his gritted teeth, I could see he was having a hard time. Our staff had told me that our patient, the mother, had deteriorated steadily during her short admission. Ongoing changes over days meant at the most only days left to live. The staff had also told me that the family were keen on our patient having further treatment for her cancer. They had been trying to feed her more as they believed that if she ate more she would be able to fight her cancer more. She had come in because of worsening nausea and appetite. They were so intent on her getting treatment, that there was a huge mismatch between their goals and our patient’s reality.

As I walked into the room and saw our patient for the first time I thought she looked terrible. Like she she could die at any time. There was a lot of distress in the room. The husband was crying disconsolately while holding her hands. The children and their spouses witnessed this in distress. The gathered grandchildren amplified the distress of the two elder generations. The room went quiet as I examined our patient. Weak thready pulse, hands and feet becoming cooler to touch. She didn’t respond to my voice or when I examined her. Her ragged, wet-sounding breaths were made louder by the intense silence of the room. It was as if everyone was holding their breath, myself included. I finished my examination and took my time coming to a diagnosis. I asked if I could sit down on the spare bed before I addressed the whole family.

“I’m worried about your mother. I think she is getting worse. I think her time is getting shorter, and she doesn’t have long to live.” Tears and sobbing around the room. Nodding indicated surprisingly dawning acceptance. “I know that you wanted your mother to have more treatments. I think if she had chemotherapy it would not make things better, but would make her feel worse, and might shorten her time even more.” “I’m sorry, I wish we could do more for her. The best we can do is to keep her comfortable, to calm down her distress.

They handled the bad news well, “please keep her comfortable.”

I was asked by a colleague why the family couldn’t let her go and wanted her to keep on going with treatments. I replied, “It’s because they love her so much. They just don’t want to lose her. Up until two months ago, she had been well, and then she wasn’t. Now she’s dying.”

The counsellor stayed behind to support the family. She arranged for the husband to have some private time with his wife. He said to her, “I’m going to be okay, I will be looked after by our children and grandchildren. I love you. Do what you need to my dear.”

She died 60 minutes later.

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 – Looking Ahead

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Photo by Arthur Ogleznev on Unsplash

Everything can change so quickly, often with no warning. We can’t prepare the family when we are unprepared ourselves.

He had come in to sort out his pain. Bowel motions were excruciating for him. He had needed laxatives to keep him regular. He had decided to stop his laxatives. No more bowel motions meant less pain he figured. Less pain, less need for pain relief, less side effects. It made good sense to him, and initially, it had worked. It couldn’t last though, what needed to be expelled could not be kept in. When it did come out it had dried out and caused even worse pain. He finally accepted our offer of admission.

The assessing doctor found out the patient had haemorrhoids – painful swollen blood vessels which would be worsened if he had hard dry poos. The fix was to soften them up and make them easier and more comfortable to pass. It took five days to achieve this and heading back home after the weekend looked like a distinct possibility.

After the weekend he looked good. He had taken some successful leave periods at home when the family were off work and school. The next day he was different. He was slow to answer and his replies were in a confused manner. He complained that he couldn’t pass urine. He had repeated bladder scans which didn’t find a full bladder. His pain was worse, he also felt nauseated. He appeared to be in a bad mood and was not as friendly as usual. He was more withdrawn and needed to sleep more. Blood tests were taken in an attempt to find out what was going on.

Severe kidney failure was what the results showed, a life-threatening deterioration, that would likely lead to his death. He was clear he did not want to go back to the hospital. He didn’t want to stay in hospice. He wanted to go home. He couldn’t wait until the doctors came to see him, he had to go home as soon as possible. He’d spent too much time away from home in the last few months.

The doctors went into his room and our patient had gone “AWOL!” He couldn’t wait for the ward round he needed to go home as soon as possible. The team arranged for some urgent prescriptions as we didn’t want him to end up in strife. Good teamwork made it happen.

We received word from his family later in the afternoon that he had died. How had he known?