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.
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.
I make an effort to greet patients in their own language as often as I can. Over the years I have learned many different greetings. Some of them are used frequently and I can now pronounce them fluently. Others are used more rarely but a thirty-second internet search can provide me with enough information to say hello. A small effort on my part but a clear statement that I am trying to understand the other person and where they are from. You may be thinking, “So what, what effect does it have?”
I was meeting our patient for the first time. I had been away and the rest of the team had gotten to know her over the past weeks. They all said hello to her and she said hello back with a small smile. It was my turn and I said to her, “Malo e lei lei.” Astonishment swept across her face before her eyes and her face lit up in a sunburst of a smile.
“You know my language?”
“Just a little bit.”
“Oh thank you so much, it was so nice to hear.”
The rest of the conversation went well, rapport was established when I spoke those four words of greeting in her native tongue. The pronunciation doesn’t have to be perfect, it’s the effort expended in trying to use their language that is appreciated. Later in the conversation, I used the word for pain, “mamahi,” and her huge smile was back again.
My late mother had lived in New Zealand for over five decades and spoke English every day in her work life as a shopkeeper. During her hospital admission, she was looked after by a Chinese-speaking nurse and it made such a difference. She felt understood not just linguistically but culturally. She felt safer.
Let’s all make an effort to help our patients feel safer when under our care, even a few words can make a difference.
I work in one of the most ethnically diverse areas in the southern hemisphere, South Auckland. There are people from many different places who now call this area home. English may well be a second, third or even fourth language to many of my patients and their families. Many different native languages are spoken and on any given day our inpatient unit may be full of people representing many different groups.
I make an effort to learn how to say simple common greetings in the native language of my patients. Over many years I have gathered a list of these greetings. If I don’t know the standard greeting I will resort to an internet search for the appropriate greeting before I meet the patient. A simple “hello” in their native language is usually appreciated and is the first step in building rapport. If I know more words in their language I’ll make use of as many as I can during the rest of the consultation. When trying to make a connection you usually only have one shot, make it a good one.
Recently I was at a research meeting in my role as a clinical advisor. In the gathering were a number of kaumatua (Māori elders.) We were all asked to share our pepeha, our introduction. Each member of the group was given time to talk about themselves. Where they were from. Who their family of origin was. How did they get to Aotearoa New Zealand. Which mountain and river they are connected to. The kaumatua in the room listened intently to each person’s story and they were actively trying to find connections with their personal stories. It was almost like speed-dating, trying to build rapport, to build connections between previous strangers. The Māori call it whanaungatanga – getting to know each other. Something that is really important for people who are planning to work together.
Again this makes me think about how we do things in the clinical realm. When we first meet our patients and their whānau/family each party are strangers to the other. In Western medicine the getting to know each other is usually one-sided. We want to know as much about the patient as possible without giving away much about ourselves. What would it be like if we introduced ourselves through a pepeha? Would it lead to more opportunities for human to human connection? Could the establishment of rapport possibly lead to the establishment of trust? You know what? I’m going to give it a go. I’ll let you know what I find out in a future post.
The patient arrived and looked as unwell as she had sounded on paper. Advanced end-stage illness, worse for wear after many weeks in hospital. Poor sleep night after night. Recurrent bad news relayed, unclear if understanding had been checked on or not. The standard restaurant question, “how’s your meal going?” is not asked in most clinical settings. I was told they appeared wary and slightly suspicious of what we had to offer. They had just met our team, they did not know us, we did not know them. They were assessing us as much as we were assessing them. We were not there to be opponents or combatants. We needed to connect in order to work together on the same team. If it wasn’t for the patient, none of us would be in the same room as each other. We were strangers who needed to try to collaborate with each other.
First impressions count. I relaxed my control of my Kiwi accent and let my inner hometown boy speak. I slipped in as many indigenous words as I knew to make it clear that their culture and traditions were welcome here in our hospice. I mentioned that a Chinese dude would be leading the singing practice the following morning, songs written in their language. “Please join me, I need all the help I can get. I’m tone deaf, I don’t understand what musical keys are, but I am loud. I once had singing lessons, but my wife asked me to ask the teacher for a refund.” The sound of our shared laughter was the background music to our rapport building project.
“We’re going to take things one day a time. We’ll get to know you. You’ll get to know us. We’ll all work together to get our patient/family member more comfortable.”
Trust has to be earned, one interaction at a time. We may only get one chance to connect. Give it your best shot.
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.
Monday
You are still the pilot Captain.
I will listen to what you want and don’t want.
I’m your navigation system.
I’m here to guide you on your journey.
I’ll point out any areas of turbulence up ahead.
I’m here to identify any dangers in your way.
I’ve guided many people.
I want to make your journey as smooth as possible.
I will deal with any baggage issues you may have.
Wednesday
Captain, you are approaching your final destination.
You have started your descent.
Your fuel tanks are running low.
You went through some turbulence overnight and I am going to make some changes in order to avoid further problems.
I know you are tired so you can keep your seat in the reclined position.
Keep your seatbelt on as the landing might be rough.
We’ll be arriving very soon.
Sit back and relax. If you need anything please let us know.
Thank you for flying with Hospice Airways.
I hadn’t seen the pirate for two days. What would he be like now? Would he be more unwell? Would he still be able to talk to me? Would we get another chance to share a few laughs?
I knocked on the door and loudly said, “Good morning.”
I peered around the corner and he did look different.
Covering his left eye was a piece of gauze and covering the gauze was a black pirate-style eyepatch which his family had brought him. He looked to have lost weight, it had only been 48 hours since I had last seen him. What was that in his hand?
He was holding onto something with a shiny handle. It had grooves in it to make it more ergonomic and so it would fit in the hand well. The hilt piece was curved both upwards and downwards. A skull and crossbones adorned the hilt. My eyes followed the curve of the blade upwards. He beckoned me towards him with his cutlass, he wanted to fight.
He instructed me to prepare my weapon.
I motioned to one of my trusty assistants who rushed out of the room to bring me my weapon of choice.
Within seconds my bright yellow electric bug zapping tennis racquet was in my hand.
En Garde!
We slashed at each other, in slow motion.
I tried to hit him, he parried my blows.
He tried to hit me, and I dove out of the way.
We kept fighting, neither of us wanting to give in.
Seconds felt like minutes, the minutes felt like hours.
Finally, he feinted left and with a deft flick of his wrist, I was disarmed.
My yellow racquet clattered on the floor. Useless. I was done for.
His sword sliced upwards towards my head, and I was given my second haircut of the New Year.
Following our mighty battle he complained of a sore throat.
My differential diagnosis – sore throat caused by too much laughing.
I wanted to confirm my suspicions and examined his throat.
I asked him to open his mouth.
“Can you say, Ar, Ar, Ar please?”
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?
palliverse.com 