One of the prognostication tools that I use in my day to day palliative care practice is a new form of medical imaging. We don’t have to worry about radiation exposure no X-rays are involved. You can keep all of your earrings and piercing jewellery on as there are no magnetic fields involved. It doesn’t rely on ultrasound technology either, in fact it doesn’t even need a power source. No it isn’t the latest version of Google Glass, or the latest VR/AR technology from Meta. My patients don’t need to be referred anywhere and the scan can occur on site, with no waiting list. We don’t even need anyone to review the imaging and interpret the findings.
Not every healthcare institution is lucky enough to be as well resourced as we are. We have a special scanner which can indicate to us which patient is the most unwell in the hospice inpatient unit. A handy second opinion as prognostication is usually difficult to get right, at best it is an educated guess. We have a mobile PET scanner which makes it easier for us to assess how unwell a person is. We just need to provide it food and water, and occasional access to the local veterinarian. Yes our little CAT scanner has four legs and a tail and is named Charlie.
His sister and nieces pushed him in via wheelchair. His skin was a yellowish grey colour. According to his family it had been a huge change from when he had arrived in town last week. Then he had been well and was able to dance with his nieces. Now he couldn’t walk without assistance as he was too weak and fatigued.
He’d been diagnosed with end-stage cancer only months ago, and arrangements had been made for him to go into residential care. As he deteriorated, his elder sister and her daughters wanted to look after him. They picked him up from his residential care facility and moved him into his elder sister’s house in Auckland.
Over the course of his first week with his family he became more unwell. Nerve related pain from his cancer worsened and led to his hospice admission. His medications were adjusted to make him more comfortable. The family arranged for a reunion. His elder sister came down to see him.
All he wanted to do was sleep. He had no appetite.
He enjoyed the family reunion, it had been years since he and his siblings had been in the same room together.
On his final day he became comatose. His older brothers came to see him in the morning, after travelling two hours by car. They talked about when they had all been young. I explained that he was critically unwell and could die at anytime.
His sisters came back to see him, and within minutes he had taken his final breath.
The largest health and disability system reforms for a generation will start in Aotearoa New Zealand (ANZ) starting in July of this year. One of the major changes is the creation of an independent Māori Health Authority. Its important task is to address the health inequities and disparities which lead to Māori people dying seven years earlier than other residents of ANZ. It has taken us 182 years to reach this sorrowful state and a real change of mindset is required if anything is to change at all. It can feel almost too big. What can I do to make things better? What difference can I make as an individual when the system has been designed to continue producing the same results? Nothing changes if nothing changes.
During a visit to one of the local marae/meeting place years ago my hospice staff were asked, “What do you have at your hospice that would make Māori feel welcome?” We struggled to answer the question. “Well here is your wero/challenge. How can you make us feel more welcome? Show us some evidence, don’t just talk.”
Thus began our journey of discovery, we needed to be educated. Bi-cultural competency training was arranged for all staff members throughout all levels of our organisation. For both clinical and non-clinical staff. We learnt about the adverse effects of colonisation, and the poison of institutional racism. We are encouraging each other to use more Te Reo Māori words in day to day hospice life. Bilingual signage has been placed as we seek a more open cultural direction.
We are singing Māori waiata/songs together every Wednesday morning. Today we were graced by a special impromptu guest. One of our tangata whenua/Māori inpatients walked into the room where we were singing. She had a big smile on her face as she joined her voice with ours. It was a privilege to be able to sing alongside her for those few minutes.
We have only just begun our journey of discovery but it is making a difference already. Another tangata whenua patient we cared for recently told me, “I started laughing as soon as I walked in. The wairua/spirit of your place felt good. I feel comfortable here. I trust you guys.”
It’s a small step in the right direction. Are you going to join us on the hīkoi/walk?
Two things are certain in this life, we are born and we will one day die. The time of death is uncertain, and in our life between these two we try and be of benefit to our families, community, country and the world at large.
We are all part of the same human family; we are all interconnected. This has been highlighted over the past two years with the pandemic. News bulletins brought us graphic images of family and friends mourning because they were not able to be with their loved ones before death and for the funeral. Harrowing images of countries being in lockdown showed us so many people dying daily and corpses being loaded into trucks heading to the cemetery for mass graves.
For a while the world went quiet as we all felt the sorrow of people who were unknown to us, as well as the fear of what lay ahead. We each dealt with it differently according to our cultural background and conditional on whether we are able to face our own mortality.
Fear is a feeling that comes usually because we don’t know about the issue that is confronting us, we have no experience with it, and we can’t predict what is going to happen. We don’t know what to do. Losing confidence in ourselves, we get shaky.
It is an indictment on us all that we can talk to someone on the other side of the world and even in space through technology, but because of fear avoid face-to-face communication with a work-mate or someone we see every day, or people within our own family… but especially someone who is dying.
The illness had affected her speech making it difficult to understand. With some effort I could tune into what she was saying but there were some things that I could not understand. It was frustrating for her as her mind was sharp but the words would not come out right. The nerves controlling her vocal cords and her breathing muscles were not doing their job any more. She tried to tell us about her suffering but she could only use short sentences. She hadn’t been able to raise her voice for years, and even if she wanted to scream out loud, only a whisper would’ve been heard.
Her pain was not physical, she could handle physical pain and simple pain relief would have helped. The agony she felt she could no longer describe in words. Her sense of wholeness had long been destroyed, her ability to exist as a person had been torn apart. Mere words could not describe the torment she had lived with for six years. I tried to listen to her actively, I tried to read her situation, her illness ravaged poker face only provided scant clues. Intellectually I had an inkling of what she had lost, but I could not feel it during our first meeting. I needed more information before I could understand.
We celebrated International Nurses Day last Thursday with a special breakfast with lots of goodies for all. Nurses are a crucial part of any palliative care and hospice team and it was great to celebrate them with some special treats. Individual paper hats were made available each adorned with little red Superman style shields, thanking them for being heroic in the jobs that they do. Special little bags of sweets were prepared and handed out to all of our staff.
There was a buzz of mirth and fun throughout our inpatient unit and this was noticed by the patients and their families too. One couple commented on it being nice to hear raucous laughter happening outside of their room. It was nice to be staying in a healthcare institution where people were enjoying each other’s company at work. This couple had stayed in many different healthcare institutions over the past years and thus spoke from experience.
Sure it’s great to ease suffering of some sort be it to dampen down someone’s pain, or to improve their nausea, or to help them with their breathlessness. Taking away a negative feeling is a good thing to do. Making a bad situation less bad is a worthy thing to do.
What if you can make someone’s situation better, even momentarily? That’s what I enjoy doing the most, having a laugh with my patients. Sure they may be critically unwell and may only have days left to live but they are still human beings and still want to be treated like a person. Finding something that can make them smile or make them laugh may just let them escape for a few seconds. A short moment of enjoyment is something worthy of pursuit.
My patient was dying of recurrent aspiration pneumonia. His swallowing had been compromised for weeks. Food and drink would be aspirated into his lungs, causing life-threatening infections. Even when he didn’t eat he would choke and aspirate on his own saliva. He was constantly breathless as his illness had stopped his breathing muscles from working. This situation could not go on. The nurses asked what we should do if was to aspirate further. I said, “We’ll keep him comfortable.”
I asked him if he felt like eating or drinking anything, and encouraged him to do so. It would not make things any worse, but might give him a small amount of simple pleasure. I suggested he could have anything that he wanted to drink, including alcoholic beverages. As I was working I couldn’t join him but said that he could have one for me. Through his non-invasive positive airways pressure ventilation mask he chuckled and his whole chest shook.
He wanted to drink Coca Cola, and to eat ice-cream. I told him to go for it, hey why not make it into an ice-cream soda? It wasn’t going to hurt him, and if he enjoyed it even better.
I’d be keen to know what was the best thing you did today?
I felt it as soon as I arrived in this hospice. The wairua (spirit) felt good, and I started laughing. This place is lovely, the staff are so nice here Doc.
Were you scared of coming in?
Nah, I had heard good things about you fullas. And it was all true, you guys make me feel comfortable.
What did they tell you in hospital?
The doctor was straight up, told me what was going on. That it was bad cancer, that there was nothing else that could be done. No bullshitting like some of the other doctors.
I went to the clinic and the doctor told me that there is nothing else that can be done. Then he talked about a possible treatment. I’m not sure if it was me that was confused or the doctor. I just want people to be honest with me. I’m not scared, I know I’m not well. We’ve lost a lot of whanau (family) in the past. I know what is happening, I’m dying. Can you be straight up and honest with me?
Sure. How are you really feeling?
A bit sore, I think I need the extra pain relief. Hey Doc, thanks for listening to me.
No worries, please tell us when you are not comfortable.
Working in a culturally and ethnically diverse area over the past ten years I make the effort to try to greet my patients and their families in their native language. My pronunciation may not be great to start with but I try. Even if it means looking up the greeting online before I walk in the room. How would I feel if I was admitted to a hospice in my adopted home country? What would make me feel welcome or not?
A small gesture to show that I am trying to understand you and who you are.
Here is my part of my collection of Pacific Island hellos in no particular order:
Bula Vinaka Namaste
Mālō e lelei
Fakalofa ahi atu
Aotearoa New Zealand
I’m always keen to add to my collection if you have any suggestions.
Ford Prefect says, “An SEP is something we can’t see, or don’t see, or our brain doesn’t let us see, because we think that it’s somebody else’s problem. That’s what SEP means. Somebody Else’s Problem. The brain just edits it out, it’s like a blind spot.”
The Somebody Else’s Problem field… relies on people’s natural predisposition not to see anything they don’t want to, weren’t expecting, or can’t explain.
From Douglas Adams’ Life, The Universe and Everything 1982
The SEP field generator is an incredible thing, where-ever you shine the beam, like an amazing piece of magic, suddenly the problem disappears and becomes someone else’s problem.
Sound familiar when you think of palliative care patients and their problems?
Other specialities do this to us all of the time, they leave work unfinished or not even attempted. They somehow know that us good-natured folks will make sure that things are sorted.
This isn’t really fair to us, but especially unfair to the patient. Where is the patient in all of this? Certainly not in the centre of attention.