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.
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.
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.
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.
“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.”
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.
Good thanks. I need to tell you about my patient. They’re very unwell, I think they might only have days left to live.
Right, the cancer effect?
Yeah, it’s causing liver failure and has made them confused. I’m not sure if they’ll be able to talk to you clearly. I think they won’t live long enough to make it through the assessment process. I don’t want to waste your time.
It won’t be a waste of time if being seen is important to them.
They have been so keen to be assessed for assisted dying. I think they’ll still benefit from being seen by you. They will feel understood and that their request has been responded to.
Yeah, it’s still worth it. I’ll come over tomorrow afternoon to see them.
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.
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