He grimaced as he pointed towards the left side of his neck.
“How would you score it out of 10, with zero being no pain and 10 the worst you’ve ever felt?”
Jaw clenched tightly he opened his gritted teeth to tell me, “7 out of 10.”
It looked more like 17.
The pillow seemed to swallow up his head. Loose skin covered his arms and torso, signs of significant weight loss.
“I’m not sure if I’ll make it.”
He was scheduled to be heading home at the end of the month, but I was unsure if he’d still be alive at the end of the week. “I don’t know either, but we’ll take it one day at a time.”
Over the next three days, he worsened each day, heading back home was not going to be an option. The family would have to bring home to him instead. They made urgent plans to travel to visit him. The clock was ticking away his life. Would they make it in time?
Their arrival had a surprising effect.
His face brightened when they came to see him. He became more alert and he was able to recognise each of his family members.
The next day he was able to eat more food.
Two days later he walked to the bathroom without assistance.
Five days later he wanted to go to the home of one of his local children.
His family’s arrival from afar had improved his condition in ways that medications could not.
The power of love had provided him and his family with bonus time. It might not last long but they would make the most of it at home together.
He died twenty days later surrounded by his family.
That’s right, anything that you swallow will probably come back up again. It’s a mechanical obstruction and our medications won’t be able to keep it unblocked.
There’s no other treatments?
We could try steroids to see if it could lessen the cancer swelling, to see if it would loosen up the blockage. It may not work, and even if it does work it will only work for a short time. And there can be side effects. Some people become more agitated, it would worsen your immune system so it would be easier for you to get infections.
Hmmm. I need to think about it
That’s fine, I wasn’t expecting an answer right now. We will keep checking in with you, we want to make sure we do right by you. When you are very unwell the body had difficulty keeping things in balance. For example physical balance can be affected and it mean you are at greater risk of falling. That’s why we’ve been nagging you about not walking by yourself.
I know you want to stay as independent as possible but we need to keep you safe. I don’t want you breaking a bone, you’ve got enough going on already.
The illness can also affect your mind balance too, you’ve probably had some trouble remembering things.
My memory has been bad for months.
And overnight you were a bit confused.
Yeah, I wasn’t sure where I was.
The strain and drain on your body from the cancer is causing it all. I know you’re trying your best to be yourself, but it’s becoming harder and harder. Things are becoming a struggle for you.
I don’t want you to struggle. Please let us help you with some things. To try and free up some energy for you. So you can spend time with your friends and family.
They keep encouraging me to do stuff, but I’m not sure I feel up to it.
Listen to your body, if you feel up to it, go for it. If you don’t it’s okay to have a rest.
Okay we’re going to work on your nausea today, and we’ll check in with you again tomorrow morning about the steroids. I just want you to know that no matter what happens we’ll keep on trying to make you more comfortable. There might come a point where you aren’t able to speak for yourself and I just want you to know that we will act in your best interests. We will always try to make you more comfortable.
You’re welcome. We’ll see you later. Please let us know if you need anything else.
I had been meaning to write the following blogpost for the past weeks and decided to do it today. I was also inspired by a LinkedIn post from a writing community co-member to try out ChatGPT the AI Author bot from https://chat.openai.com/chat. Here’s a comparison of what I wrote in one 25 minute Pomodoro and what ChatGPT wrote in 25 seconds.
A too late early Christmas Present – by James Jap – 25 minutes
Communication had become difficult and was another thing that cancer had robbed her of. She had lost her voice and had to write words down in order to communicate.
She had tried various methods from good old paper and pen, and had settled on a whiteboard and a set of markers.
This worked well enough but due to her condition at times the whiteboard would become wet and then the markers could not write clearly. Waiting for the marker and the board to dry off meant a delay in communication.
Simple gestures could be made in an attempt at impromptu sign language but it could not convey what she wanted to say.
She could mouth words and some people were better than others at reading lips but this was not something that could be counted on.
I had enjoyed getting to know her and we had exchanged witty banter between ourselves.
I would say something.
She would write something funny in response.
She made fun of my hairstyle. She talked about my bathroom habits and my general appearance.
I talked about referring her to our physiotherapist to help with mobility and to help with clearing chest secretions.
She wrote, “I don’t want them thumping me.”
I replied that I would not let our Physio-terrorist do that to her.
She raised her eyebrows in quizzical fashion.
Despite severe pain she never lost her sense of humour.
Christmas was coming up and I wanted to surprise her.
I had seen some electronic notepads in one of those stores that used to sell books, I think people in the past called them bookstores. I made a plan to buy one for my patient.
I thought that having something with an LED screen that could be written onto with a stylus could be handy for her, and it could be erased with the press of a button.
I went out to search for this little notepad but not being an experienced shopper I made a number of mistakes.
I knew there was a bookshop nearby in the local mall, I headed out to the mall, and then could not find the bookshop. In the three years since I had been to the mall, the bookshop had closed down.
I looked for other bookshops but then smartened up and looked up where I could buy the electronic notepad from a local shop.
I found it and proceeded to the shop, I asked three people for their assistance but no-one was able to help me.
The fourth person at the customer service desk confirmed my worst fears, they were out of stock. But I could go across town to their other branch which had stock.
Off I went with my phone’s battery running out, making GPS a soon to be unavailable feature. For some reason traffic is busier in the weeks before Christmas. Shops are also busier and people seem more stressed and less friendly.
I arrived at the other store branch and again asked for assistance showing the store worker a picture of what I wanted to buy. He was helpful and led me right to a shelf which contained non-electronic clipboards.
On his second attempt we found the electronic notepad I had been searching for. Success at last. I tested it out, I could write on it easily with the supplied stylus and it erased with the touch of a button.
I presented the electronic notepad as an early Christmas present to my patient, and showed her how to use it. She thanked me in writing and I said I would catch up with her the next day.
The next morning I went to see the patient but the electronic notepad was not in sight. The old whiteboard was there.
Had my early Christmas present come to late to be of use?
My patient was much slower to respond to any questions, and even had greater difficulty in writing. She had deteriorated overnight and was not her usual self. Her usual quick wit had slowed down markedly and she was not as clear in her mind as she had been just yesterday.
A lot can change in a day in a palliative care setting and here was a clear example of the change, she had changed cognitively overnight and was not longer able to use the electronic notepad.
I worried that this meant that she might only have a short time left to live, and this was conveyed to my patient and her family.
A too late early Christmas present – by ChatGPT Dec 15 Version – 25 seconds
It was the first week of December and Lucy was already feeling the holiday cheer. She had always loved Christmas and the excitement of gift-giving and receiving.
This year, she had decided to surprise her husband with an early Christmas present. She had found the perfect gift, a new set of golf clubs that he had been wanting for a long time. She wrapped it up carefully and placed it under the tree, planning to give it to him on the following Saturday.
However, on Wednesday night, Lucy’s husband came home with a big grin on his face. He had received an early Christmas present from his boss at work – the exact same set of golf clubs that Lucy had bought for him.
Lucy was initially disappointed, but she couldn’t stay mad at her husband’s excitement. They decided to return the duplicate gift and use the money towards a family vacation instead.
In the end, it turned out to be a blessing in disguise. The family enjoyed a wonderful vacation together, creating memories that they would cherish for a lifetime. And when they returned home, Lucy’s husband was still grateful for the thought and effort that she had put into her early Christmas present.
Empathy – to try to imagine what another person feels like, to put yourself in their shoes, and to try to see things from their point of view.
Compassion – To identify another person’s suffering and to want to do something about it.
Autonomy – The right to make your own choices for yourself.
After years of training and more years of clinical practice, I try my best to practise medicine in a compassionate manner. I try to find out who they are, what drives them as a person, how I can help them in the way they want to be helped.
I try to do my best to inform them of their options, of what I think lies ahead for them. I try my best to take as much stress out of their individual and familial situations. I draw upon my years of experience and up-to-date knowledge. I am not afraid of showing that I care for them and I really want to help them out.
On occasion, they will reject my best-laid plans. They will resist my best attempts to sell them my product. They will not want what I have to offer. This is especially difficult when I am sure that my management will likely make them more comfortable, that it will probably lead to alleviation of suffering.
Inside me a voice starts to talk – “What do you mean no? You can’t be thinking straight. I’m pretty sure I can make you more comfortable. Can you give it at least a try? I just want you to try something which I think has a good chance of helping you.”
Get out of the way son….
It is hard when someone chooses a path that will lead to more suffering, but it is their choice to make. Their right to do what they want at the end of their life. Just as it has been their right to choose what happened during the rest of their life, why does that have to change because they are dying?
It is hard to bear witness to someone else’s suffering when they don’t want to take the treatments we have to offer. I promise people that I will listen to what they want or don’t want and will be guided by them. I have to keep my promise. They have to do what is right for them and their family.
As health care practitioners we are only involved for a brief period of time. Our patients and their families have to live with the decisions they make for the rest of their lives. Generations of a family can be affected by the choices made. They have to do the right thing for themselves and we need to give them the opportunity to do so.
After the emotionally heavy meeting with the doctors, they needed something to balance things out. There had been so much information, so much disappointment. They needed something to take their minds off the grim reality.
Friends visited and brought their little children. “Uncle we want to ride on the train.” The tiny children got on board the footrests of the power chair. “Choo, Choo, Choo, Choo, Choo, Choo, Choo, Choo around the room.” Great big smiles on little faces. He had a few minutes of fun with their friends’ little kids.
A guitar was brought out and the room was filled with music. His favourite song was played and he sang along. Heart-breaking words sung from the soul. Hanging out with their friends was better than any medicines or treatments the doctors provided. A short break, smiles, laughter, and stories shared. Food shared. Love shared.
The smile said it all. Everyone felt better after a dose of normality. Hanging out with their besties and having some fun. Playing together across three generations.
“Good morning, I’m the specialist here. What’s your name? This is your daughter. How old is she?”
“You’ve all had a rough night.”
“Yeah, every time they turn him he has bad pain.”
“There’s been a lot of changes over a short time.”
“Things have been happening too fast over the last weeks.”
“We need to make some changes to make him more comfortable. It would be better for him to have a catheter, then he won’t get wet and we won’t need to change his pads so often.”
“Okay, let’s do it. His breathing has changed, is it a sign that things are getting worse?”
“Yes, everything is getting worse. His body is so unwell that it can’t control his breathing anymore. His breathing gets quicker, then it slows down, and then there are gaps. As he becomes more unwell the gaps become longer and longer. His hands and feet will start to feel cold as his circulation worsens.”
“How much time do you think is left? Should I call the rest of the family in? They visited last night.”
“It might just be hours to short days left, but he could have much less time if the changes continue happening faster. He could go at any time. It’s a good idea to call the rest of the family in.”
“We’re going to change the medications to control the pain better. Since I’m already gowned up I’ll put in the catheter now. I’ll ask my team to bring the equipment in.”
“Okay, I’m going to step out to make some phone calls.”
“Hey man, I’m going to pop in a catheter to catch your urine, it’ll keep you nice and dry. Then we won’t have to change you as much which won’t be as painful. We’ll keep a close eye on your wife and daughter. Your daughter painted something nice for you, looks like a fairy with a magic wand with a star on it, in purple. The words say I love you Dad.”
“I’m just going to check the pulse on your neck. Hmm, I can’t find it. I’m going to listen to your heart and lungs now. I need to shine a light in your eye. Same on the other side.”
“I’m very sorry for your loss.”
“Mummy, why isn’t Daddy breathing?”
“I’m sorry your Dad has died. He was trying his best to hold on for you, but the illness has been too much for him to handle. Now he doesn’t have any pain and he is heading up to heaven. He’ll still be keeping an eye on you and will be able to hear what you say to him.”
Harsh life stuff happened and they had to part. Too many angry words exchanged when under the influence had driven them apart. It had taken him a while to realise that and by then it was too late to reconcile.
Instead, a friendship developed as they continued to parent and co-grandparent, together but at a distance. They were still a family but they no longer lived under just one roof.
With earnest intentions they made it work throughout the years. He had always been strong and active. Determined to leave his mark on the world. To grow good young people into good citizens was his life’s purpose both professionally and at home.
The quality of the family relationship was something he was proud of, and when he needed them the most, they moved into his home. As he felt weaker and more tired they were there for him. His children and his ex came back to care for him. The next generation came to visit as well. He was proud of them all, happy they had pursued university education. Most of them had completed degrees or were well into their studies.
It was confusing for his children. Over the past weeks, he had needed to sleep more. He spent more and more time in bed. The trusted family doctor thought it was due to the illness in his digestive system. Something that shouldn’t have been there having grown in a painful and bloody manner. It had sapped his strength and drained away his previously abundant energy.
He had always been good for his age. When he was young he was tall for his age. When he was older he was strong for his age. Now he felt his age. All seven decades of his life had caught up with him over the past fortnight. He was still a big man but he had been scarily losing weight.
His mind started playing tricks with him. It was like he had turned up for Maths class with only his Geography equipment. Everything didn’t fit, he felt like he didn’t belong there. When was he? Even that was becoming less clear.
“What day is it? Why are they wanting me to leave? Have I done something wrong? It’s my house. You can’t take me out of my own home. What are you going to do with me? I don’t like the way you are looking at me. Leave me alone. Go away. I need to be at school. I need to be in charge.”
I was surprised that a benzodiazepine subcutaneous infusion had not been started. Despite three anti-seizure medications being used, the seizures continued.
I was surprised to receive the referral for a hospice inpatient admission as I thought the patient would’ve died a week ago.
My team was surprised that the patient could be easily roused. He had been talking to his wife and had been eating small amounts of food.
The admitting doctor was surprised when the patient said, “I see another man in the room.”
“Is it someone you know?”
“Yes, it’s Robert.”
The doctor had to pick his jaw off the floor.
Someone named Robert had died in the same room, on the same bed, only days ago.
We were even more surprised when the patient’s wife said that the late Robert had been her husband’s good friend. They had worked together for many years and had spent a lot of time with each other. When we heard this chills ran down our spines.
The idea that Robert had visited brought comfort to the patient and his wife.
Our patient joined his friend Robert on the other side only days later.
It was a day like any other. He woke up and was helped by the staff out of bed. Breakfast was served, it was the usual porridge, toast and jam. Finished off with a nice cup of tea. The next part of the routine involved having a shower which would take half an hour. Nothing out of the normal at all. His wife would be coming to visit for morning tea, they would read the paper together. See what was going on in the world. The same routine they had followed over many months.
Everything changed when his hand started twitching. You had to really look to notice it, and it would be gone within seconds. When this happened his face looked as if all expression had been wiped away by a whiteboard eraser. Blank. More of these episodes occurred but only some were noticed by the busy care home staff. One registered nurse supervising the care of 20 to 40 patients was the norm for the industry. In recent months it was up to 60 patients, and the staff had trouble attending to their residents’ routine care, let alone anything out of the ordinary.
The care assistant noticed the patient’s body stiffening, his right arm clenched too tight to not be painful, a pained expression on his otherwise blank face. He did not respond to voice. The arm clenching lasted for a minute and was followed by violent shaking of his right arm and leg. The bedsheets became wet. The jerks lasted for two minutes at which point the patient awoke. He was disorientated and had no memory of what had happened. The on-call doctor had been called to review the patient, but would not be available until the afternoon. Whilst awaiting the doctor’s visit two further seizures were witnessed and the patient was sent to the hospital.
What followed were long weeks of assessments by many different specialist doctors. Many scans and invasive procedures looked for a cause for the seizures. Treatments were started to try to control the seizures. One medication was started, then another, and another but the seizures persisted, as the patient’s consciousness levels desisted. The local experts were called in and gave their opinions. The brain scans revealed worsening of a ‘benign’ brain tumour – benign meaning not spreading but as we saw in this case, not a benign outcome. Despite all efforts, the seizures and worsening consciousness levels worsened.
Serious conversations about end-of-life were held and it was decided to keep him comfortable as none of the treatments had worked. They had tube-fed him but he kept pulling out the uncomfortable tube which went through his nostril into his stomach. Palliative care advice was sought and an infusion was started to replace medications that could no longer be given to him including the three anti-seizure medications in combination.
Finally, an infusion was started and controlled the seizures. The hospital teams expected the patient would die soon. Everyone was surprised when he woke up and talked for the first time in weeks.