Yes, it could actually be much shorter if she deteriorates faster.
Thanks. We have things we need to prepare.
No matter how long she has got left we will do our best to keep her comfortable.
Thank you.
She’s been an important part of you and your children’s lives.
Yes. It’s hard, it’s the first time we’ve been through something like this.
We’re going to get your mother through this, we’re going to get you all through this. If you have any worries or concerns please share them with us. Our job is to take as much stress out of this situation as possible. Please let us know if there is anything we can help you with.
Thank you. We brought you some cakes.
You brought three cakes, that’s very generous of you.
Yes, one for each of the nursing shifts.
That’s nice of you to think of each of the shifts.
The staff have looked after us all well. Thank you.
That’s what we are here for. We’ll see you later, try and get some rest when you can. Thanks again for the cakes.
Yesterday afternoon she told her story well. She recounted her recent bouts of illness which had culminated in her last hospital admission. She was keen to go home as soon as possible. The way she looked it appeared she had a good chance of making it there. The plan was to optimise her symptom control and then discharge home would be considered. She was in good spirits and was glad to have arrived in our inpatient unit.
The first night was disturbed by worsened pain, agitation and confusion. When we reviewed her the following morning, she was very unwell. This once talkative lady was unable to respond to voice. We diagnosed that she was dying. Generations of the family were asked to gather together to say goodbye to our patient as her time appeared to have shortened. Her medications were adjusted to maintain comfort.
I was surprised when her son told me that his mother had woken up and was talking to her family again. This was in time for the visit by her grandchildren. She enjoyed seeing them, hugging them and talking to them during a nice afternoon. By the evening she was exhausted and drifted off into another restless sleep. She never woke up again.
My science couldn’t explain how this dying lady had gathered what remained of her limited energy in order to be there for her visiting grandchildren. The last hurrah or the final rally is something I have witnessed too many times in palliative care settings. It really is a thing. A person can wake up from a coma to provide a final gift to their loved ones. Yet another mystery we often encounter at the end of life.
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.
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.
I’ve had relatives who’ve come in before but they never made it out, they died after a couple of weeks. When he was asked to come in we were pretty nervous, we didn’t quite know what to expect. Yeah, we were scared. We had to do something though. His tummy pain was real bad, but it was his anxiety and panic attacks that were the worst. He’d freak out and I didn’t know what to do. I’d freak out too. His pain was controlled after a couple of days in hospice, then his panic attacks settled down. This was despite having received the worst news ever, that he had cancer.
We didn’t know they were looking for cancer during the last three months. We thought they were trying to find out why he was constipated. We didn’t know why he had lost 30kg of weight. He had always loved food but then he had no appetite. The poos kept on changing, sometimes hard, sometimes soft, sometimes with blood. They stuck a tube up his bum to have a look but they had to stop because the sedation they gave him almost killed him. It was a shock when the hospice doctors told us that the other doctors thought he had cancer.
The other great thing about being here in the hospice is that it is neutral ground. It was safe for him and his ‘niece’ to meet up here. You allowed us to have some space and they were able to start talking. Yesterday they ended up just going to a cafe together and they sorted out the issue between them that had kept them apart for decades. He’d done some stuff in the past. He’d done his time. Coming here to hospice allowed them to heal. Deep healing of the spirit happened yesterday. He came back a changed man. A father and daughter were able to connect with each other, to start to build a relationship that had been broken for years. It was good for the grandchildren to see this happen. It’s good for the whole family. We couldn’t have done it without what you have provided us here. It means so much to us. Thank you so much.
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.
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.
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.
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.
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