In the Chinese languages the word for the number 4 sounds like the word for death. Thus it is avoided as much as possible. In Chinese-dominated countries, buildings will have missing 4th, 14th, 24th floors, etc. On hotel room floors there will be missing rooms 4, 14, 24, etc. Such is the danger of the word that it must not be mentioned if at all possible. This can also occur in non-Chinese countries where members of the Chinese Diaspora have settled. Through a laborious application through the local city council, the former number 224 is now known as 222a.
To mention death is to welcome it. Don’t talk about it and you can avoid it. Keep away from hospitals if you don’t want to get sick. Don’t go to graveyards or the deadly malaise will be caught. Advance care planning can be a difficult subject to raise for members of such cultural/ethnic groups. Funeral insurance may be a hard sell. Death is not discussed and people become unfamiliar with it. What you don’t know about becomes a scary monster. Something to be feared.
Not many visitors want to take the tour of the local hospice. “What do you do for a job?” “Oh…you must be so…special,” whilst clutching a bulb of garlic in one hand and in the other prayer beads. Holy water, buy now before stocks run out.
The Palliative Care trainee greeted the Renal trainee, “How you doing?”
The Renal trainee replied, “I’m saving lives.”
The Palliative Care trainee thought to himself, “Sure you are, while I am saving quality of life.”
If people have trouble even talking about dying, how will they be when it comes to looking after dying people? How will the dying patient be treated? Will they be treated as a failure in life? Are they worthy of our care and attention? They can wait, they’re dying anyway. As if they had any say in the matter.
As medical technology has improved throughout the world, societies are less accepting that death is a fact of life. Death-denying cultures are on the rise at the detriment of some of the most vulnerable people on Earth, those who are dying. That doesn’t sound right to me. Maybe I’d better be careful in my choice of words.
Every summer the hospice is visited by thousands of flies.
We are situated next to a big park and flies are a constant presence in the warmer months.
They can be really annoying for our patients who may be too weak and tired to fend them off. Their family members may also have troubled keeping the flies away.
Every summer I have said that I would bring in an electric bug-zapping racquet to deal with the flies.
This summer I finally brought one in.
In recent weeks as well as doing a medical round I also do a fly-catching ward round at least once a day.
I made myself available 24/7 on-call for the purpose of catching pesky flies. I can be called in any time of the day or night.
This has led to great amusement for patients, family and staff members.
Yes, I am probably the most highly qualified pest control worker in the country.
As well as catching flies I practise some medicine as well.
I clear each room of flies and then I head outside to the balcony area and get rid of the ones that are out there as well.
It’s one man against thousands of flies but if it makes my patients’ time slightly more bearable it is worth it.
It is also a good way to add to my daily step counts.
I will continue to catch flies and expand my repertoire of work roles.
This is especially important each and every Flyday.
They had lived in New Zealand for many years and could speak English as their third language. Their English was pretty good but they did not feel confident when discussing medical issues with healthcare staff. Their children had grown up here but were busy with work. One child worked in NZ, the other child was overseas. Thanks to time zone differences, their overseas child would sometimes be available to help with translation during our patient’s clinic appointments. The patient and their spouse didn’t want to risk any misunderstandings when it came to discussing medications and treatment plans.
We had offered them a virtual appointment but they wanted to come in person. Face to face it was easier to communicate even with masks on. I greeted them in our shared second language, Mandarin Chinese. This made them feel at ease right away. They felt they would be able to communicate better with me. They had come for a pain review and I was able to quickly assess our patient. Our patient would be seeing their Oncologist the next day. I provided them with written instructions and also wrote a note to the Oncologist asking them for advice about another problem they had mentioned to me.
The communication was by no means perfect as my Mandarin is not 100% fluent, especially when talking about medical issues. I had to use occasional English words interspersed between paragraphs of Mandarin but we were able to understand each other well in terms of language and also cultural expectations. They were pleased to meet our pharmacist who could also speak Mandarin.
It felt good that our diversity and inclusion recruitment programme was making a difference. Our effort to reflect our demographic continues to be beneficial and is another patient-centric point of difference in the services we provide. We are doing better than before and will continue to keep trying to make our ability to connect better.
The reason your legs and tummy are swollen is because of your illness. When you are really unwell the body is under great strain and isn’t able to produce the protein that your body needs. Amongst other roles protein keeps water in your blood supply. When you don’t have enough protein in your blood the water will leak out into your tissues. That’s why your legs and abdomen are so swollen. This is not the kind of swelling which will respond to medications that make you lose water. They would make you lose water from your blood supply leading to dehydration but the fluid in your legs and abdomen would not decrease. Massage can help shift the excess fluid if the problem was blocked lymph glands, but it is unlikely to help the kind of swellings that you have. That being said it can be soothing and can make you more comfortable so I would encourage you to have gentle massages.
We try to be flexible when it comes to visiting hours here. We know that your energy levels are low and that you feel like you need to be at your best whenever your visitors are around. This can be exhausting. I would recommend that unless it is the people closest to you visiting that other visits be limited to ten minutes. You can blame this on me, “that nasty doctor has limited visiting times.” Your energy is a precious and scarce resource. We’re keen to help you save your energy for whatever you feel like doing. Please let us help you. We’re keen to try to make life easier for you if possible.
It’s not like what you see on TV. In real life, resuscitation doesn’t work so well. I’ve worked on many cardiac arrest calls in the past and almost 100% were not successful. In those few successful resuscitations, the person was left physically and mentally damaged. With your burden of disease, the chances of a successful resuscitation would be close to zero. The first thing they teach us in medical school is, “first do no harm.” If something that we are considering doing has questionable benefits but likely harm, we really need to think about it carefully. You have so much going on already, and the last thing we want to do is to make your situation worse. Some of our treatments could worsen things with little chance of benefit. If your heart or lungs were to stop working, we would not be able to bring you back. We would not perform CPR as it would cause you harm with no benefit at all. I don’t think you are at risk of having your heart or lungs stop just yet, but I have to be clear with you as to what to expect. I don’t want there to be any surprises between us. It’s not over yet. So let’s focus on making the most of your time. Let’s concentrate on something that will help you, treatments that can decrease your suffering, and make you more comfortable. Is there something that you have always wanted to do that you haven’t done yet? Is there something nice that we could help organise?
Medical masks have become part of daily life in hospice and palliative care units all over the world over the past three years. We have had to get used to having important conversations with most of our faces covered. Compassionate expressions have had to be conveyed with the aid of eyebrows and hands. Smiles have been with eyes only rather than with the full face.
There are a number of workmates I have worked with for two years or more, with which we have never seen each other’s faces. I removed my mask in order to be heard more clearly during a family meeting the other day and my patient who had known me for eight months saw my whole face for the first time. There are young children who have only known people outside of their own families to wear masks most of the time. Things are changing with the easing of COVID restrictions but for the healthcare workforce, it will be a while yet until we can take off our masks for good.
A barrier to viruses can also serve as a barrier to communication. People who have hearing impairments cannot lip-read if other people’s mouths are completely covered. There has been less transmission of yawns. Apparently, if you are more empathetic and you see someone else yawn, it can trigger a yawn of your own.
On the other side of the mask is that there are many choices of masks that people can choose to wear. Maybe it has allowed people to show more clearly what fashions they want to show off. People can show their membership in groups with the type of mask they wear. They don’t just have to be the same old boring surgical light blue but can be any colour of the rainbow.
Has it become easier for people to mask their intentions? What else is being hidden? What else is being left unshared? Kisses are left unblown. We are now more familiar with the smell of our own breath than ever before. What else has been lost since we have been wearing masks? Will we ever get those things back?
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.
Nod.
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.
Sigh.
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.
Nod.
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.
Nod.
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.
Thanks Doctor.
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.
“Good morning, I’m the specialist here. What’s your name? This is your daughter. How old is she?”
“She’s eight.”
“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.”
“What’s happened?”
“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.”
palliverse.com 