I think therefore I am? – Final Call

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How can I tell when someone is about to die? I have had practice, especially over the 15 years I have worked full-time in palliative care. It is not so much a science as an art. You try to find evidence to prove your diagnosis. A person has become less active. They need to rest or sleep more. They have become less mobile. They are eating less. They are losing weight. They are losing their interests. They are engaging less with the world around them. This might be what we see in the months preceding death.

In the weeks all of the above continues, and there is an overall diminishing of a person. They may be physically shrinking before your eyes. Cheek and other facial bones become more prominent. Their movements may slow down. Movement of limbs, movements of bowels. The body’s functional ability becomes impaired. This could lead to loss of balance and falls. Falls could lead to minor injuries like skin tears or bruises, or major injuries such as broken bones. The appetite worsens even more. Sense of taste and smell may fade, as the body starts to fade away.

I often talk about the spark leaving people’s eyes. In Māori, they talk about the Mauri or life force of a person. Which could be a synonym, maybe spirit or soul could also fit. Mojo could be another. The sign of an energised being, a sign that life is still there to be lived. No matter how physically frail a body may become the spark can hang in there for a while. It can be hard to describe exactly what it is.

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Palace of Care – Confusion

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We were confused by the discharge letter. Our patient had been transferred from the hospital after a two-week admission. During the admission, the Oncology treatments had been stopped. On discharge, it appeared that the medications had been restarted. The Oncologist’s plan was unclear. On the second day, the patient developed a new abdominal pain. The pain was so severe that the patient felt they were ready to die. We changed their pain relief and also tried to cover the shortness of breath. By the afternoon the patient was more comfortable and able to sleep. The family had received a phone call asking for the patient to return to the hospital for further treatment. This surprised the family and our hospice team as the patient had barely been in the inpatient unit for 24 hours, and the hospital asked them to return. We called Oncology to find out what was going on. They wanted to give radiotherapy treatment to the patient’s back, for pain relief. We said we would see how the patient was the next morning as we were unsure if they’d be well enough to return to the hospital.

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I think therefore I am? – A walk in the garden

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My fitness tracker died on me a few months ago and since then the wear pattern on my shoes has slowed down. The reminders to do at least 250 steps each hour were a good reminder to stay active during the day. I have the luxury of working in a place with a garden surrounding it. A few times a day I can go out for a quick walk around the garden. One orbit is 500 steps, which would add to my daily step count. 10000 steps a day was more than achievable. The fitness tracker wasn’t mine, but one I had inherited from a family member, but I wore it out.

A few minutes of self-care interspersed within busy days. The simple act of walking in some nature. The sunlight on my face, the breezes through my hair. The sounds of the insects and birds doing their thing in the trees. The wind winds its way through many thousands of leaves. Not quite a forest to bathe in but in certain parts of the garden, you can stop under a tree and imagine that you are in much deeper woods. A momentary escape from the hustle and bustle of the workplace, I am briefly transported thousands of kilometres away. The fresh air is scented with the products of the plants themselves. It’s as if I am a time traveller, going back to the wellness retreat I attended three years ago, but I am not the same person anymore. Three years older and hopefully wiser.

I return to my office and the ward feeling refreshed. These micro-breaks throughout the day help to keep things calm.

Guest Post – PRR – STOP CARRYING THE PAST

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It is not a big surprise if I tell you that we can’t change the past – we all know there is no way to turn back time. Still, we cling so strongly to memories and experiences of the past that we hardly enjoy the present. Especially negative memories, which can have a very deep impact on how we plan our lives and think about the future.

Because of this some people develop very negative thoughts. For example, constantly thinking about revenge and wishing a person suffers for the things they did to them. Or they are so affected by the difficulties they have been through that it is almost impossible for them to find happiness in their lives, then they become depressed and unable to help themselves or others.

Although you may not be able to see it, these kind of thoughts can be very harmful. They may lead to negative actions, if you succeed in carrying out the plans you made. But most of all these negative thoughts will take away your joy in life, awareness of the present moment, and the opportunities you have to become a better human being.

Actually, the best revenge you can take is not allowing other people to make your life miserable, don’t give them this kind of power or satisfaction. You are the one who controls whether you are happy or unhappy, no one else. It all depends on your mental attitude.

Of course we all face challenges in our lives, but we can face our problems with strength and courage or we can let ourselves down. We can allow the past to take over our present and future, or let go of the past and decide to turn our present and future into a better one.

I can tell from my own experience, letting go of negative things that happened in the past can be a great relief. It is like a great weight we have carried for so long being lifted from us. It makes us light and energetic to continue on our journey. As Indira Gandhi said, “Forgiveness is a virtue of the brave.” So, forgive yourself and others, be brave, let go of the past, and try to make every moment of your life meaningful.

PRR        

I think therefore I am? – Brazilian Jiu Jitsu as a holistic self-care practice

I virtually attended a self-care workshop in Canberra today. I prioritise and practise self-care daily as outlined here. I still found it good to have a refresher on the importance of self-care for homo sapiens in general, but especially so for us palliative care practitioners.

The presenters pointed out the great resources available from Palliative Care Australia which have been produced by Palliverse’s own Dr Jason Mills. The downloadable PDF can help you design your self-care plan. I think all palliative care practitioners could have this as part of their personal development plans. The work we do is different, we come face to face with other people’s death and dying several times a day in clinical practice.

The session on self-compassion was another useful reminder to me, as I had completed a six-day self-compassion-focused wellness retreat three years ago. During this, I learnt to speak to myself as if I was speaking to a good friend who needed my considerate help. Our inner self-talk can be too harsh and over-critical. We are often too hard on ourselves and this can be self-destructive.

An Aotearoa/New Zealand approach to self-care would need to cover domains of the NZ Maori Health Model – Te Whare Tapa Wha. Wairua – Spiritual, Tinana – Physical, Hinengaro – Emotional, Whanau – Familial/Social. Training in Brazilian Jiu Jitsu (BJJ) has been an addition (some would say addiction) to my self-care practices and it helps me to cover all four health walls. Physical exertion has led to muscle gain and weight loss. BJJ has taught me to be more emotionally resilient and I feel I can handle more of everything. Regular exposure to the painful stimulus of joint locks and choke attempts has provided small doses of suffering. I can control myself in uncomfortable positions and it has helped with ego control. It is okay to tap out when you are beaten. I feel I have joined a family or community of practice and have befriended a culturally and age diverse bunch of people. In terms of spirituality, I feel more connected to my body as during BJJ training you have to be totally present in your body and attuned to what your opponent is doing. It can be a real escape from the daily grind of the rest of your life. If your mind wanders during a rolling session before you know it your joints might be in painful positions or your neck is being choked.

Yes, last week I did break my finger tip extensor tendon and have to wear a finger splint for 12 weeks. I returned to training this week and have been modifying my approach to protect the healing fingertip.

I think therefore I am? – Blah Blah Blah

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A lot of importance is placed on the first thousand days of life and that is rightly so. The first three years of life are the formative years and can make all the difference in someone’s life. Some of the crucial attachments are formed and if things do not go well, there may be major setbacks which affect the rest of life in many ways.

What about the last thousand days of life? How a person lives in their final days needs to be considered. All of us who are born and live will one day die. Exactly when we do not know. People with life-limiting illnesses will live for much shorter periods than most people of similar ages. Illness has a detrimental effect on a person. Their physiological age no longer matches their chronological age. People with life-limiting illnesses can be thought of as frailer. Their organs are under strain from illness and may not function so well. They need the input of the whole multi-disciplinary team. Occupational Therapy and Physiotherapy input may become essential components in maintaining functional ability and independence.

The New Zealand Health Strategy was published in 2016 and it aspired for all New Zealanders to live well, stay well, and get well. No mention was made of dying well, despite all New Zealanders dying at some stage. Also in 2016 was published the Healthy Ageing Strategy aimed to have, “Older people live well, age well and have a respectful end of life in age-friendly communities.” This was followed in 2017 by the Palliative Care (In)Action Plan, which talked about planning a lot of planning but not much action.

Hey, let’s form some committees to plan for planning to take action. That will only take ten years or so, by that time a miracle would’ve happened and death would’ve been cured. Not quite, but the biggest health sector reforms in a generation started taking place on 1 July 2022, revealing a mystery to be solved. What will happen to us all? What opportunities for long-term palliative care partnerships may become available? What opportunities can we make for ourselves to ensure that palliative care/hospice remains relevant now and into the future? How can we shape the last thousand days of New Zealanders’ lives? Time to be creative and innovative. Time for some alchemy, time to transform talk into action. What do we want palliative care/hospice to be like in five years? Ten years? 25 years?

Hey, wait a minute, we haven’t sorted out the five-year survival of the New Zealand hospice sector yet. Maybe that needs to be the top priority.

Palace of Care – Phone a Friend

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I was asked by a friend of our hospice to phone their cousin. This was because the cousin knew their favourite cousin had a long association with my hospice. The cousin’s friend of over five decades had always been unwell. They had inherited a genetic issue which led to lung damage from a young age, which led to chronic lung infection and scarring. A life lived in between many hospital admissions. The lungs had an unwelcome guest in the form of smelly bacteria, which had worsened already impaired breathing. As if there wasn’t enough on their plate along came cancer. The accumulation of all of the above resulted in worsened quality of life and increased struggles with activities of daily living. There was only so much one person could tolerate. A conversation about assisted dying was had with their family doctor as the law had allowed for this as a legal option for end-of-life care. The doctor assessed their patient as eligible. The second assessor had a different opinion. Request denied.

The patient was upset and didn’t know what to do. They phoned a friend to discuss this. The friend didn’t know what to do and phoned their favourite cousin. The cousin didn’t know what to do and phoned a doctor they knew at the hospice that would be willing to discuss assisted dying – still a taboo subject amongst many palliative care people in Aotearoa/New Zealand despite it becoming legal from November 2021.

I listened to the story and without full clinical details, I could only offer general advice for someone from outside of our catchment area. The person sounded unwell to me and might have less than six months left to live. They also sounded as if they needed more input from the local hospice service. The cousin said the hospice had sent a nice volunteer who was of the same ethnic origin to provide some company for the unwell friend. It was a nice thought but the hospice hadn’t checked a crucial detail. The volunteer’s English was limited, but they spoke the language of their ethnicity well. The friend looked similar to the volunteer in terms of ethnic features but had been born in New Zealand, only spoke English, and did not speak the ethnic language at all. Smiles and sign language could only go so far. It’s always better to ask rather than assume. Books and covers.

I suggested the cousin could encourage their friend to ask for more help from the local hospice as people in similar situations were being helped by hospices all around our country. I suggested that the patient could contact the assisted dying service to explain the outcome of the assessments made as the patient sounded as if they might fulfil the eligibility criteria. The cousin thanked me and said they would pass on my suggestions to their unwell friend. I felt it was a shame that their friend did not feel able to talk to their local hospice about their situation and assisted dying directly. I won’t make any assumptions about possible reasons.

I think therefore I am? – Homeostasis

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Humans are good at maintaining homeostasis and keeping things in balance. This includes the levels of various biochemicals in our bloodstream, blood pressure, body temperature, and sitting/standing/walking balance. The human body has many different organ systems with various functions and constant adjustments are made to keep us all in good running order.

When you are unwell the homeostasis may not work as well. You end up with fevers and may become dizzy and lose physical balance. Emotional balance can also be upset and uncomfortable feelings may be revealed. When things get really out of balance physical falls can occur. A high blood calcium level can be dangerous. Threatening both quantity of life, and quality of life.

The balancing act of life cannot be continued, the tight rope has become too steep to climb, the distance too far. Despite everyone’s best efforts, nothing can stop the fall. The situation’s gravity reminds us that what goes up must come down. How arrogant are we mere humans to think we could control Nature? State-of-the-art treatments may be offered but there aren’t many guarantees in this life. In the end, we all fall and cannot get up again. We can’t stop the fall, but maybe we can soften the impact of it with the care we provide. Let’s keep on trying.

Guest Post – PRR – WHO’S FREE?

People are always talking about being free and independent – kids want their own car and house so they are independent and free from their parents, people want their country to be independent and free from unwanted rulers. But nobody is free and independent.

Who really has control over themselves? We don’t have control over anything, not just external things, but even our own mind. We can’t control what feelings and thoughts we have from one moment to the next. And when these thoughts and feelings come, we are completely carried away by them and our life becomes like a roller coaster.

Modern technology makes everything faster, which in one way is good as we have access to more things, but in another way, the roller coaster of our emotions becomes much faster. For example, previously people exchanged letters by mail which took days or weeks, but now people exchange emails and text messages almost instantly.

We have no control and are totally dependent on conditions. For example, being in a relationship, if you talk to him or her every night and then one night you call and there is no answer, then you start to have all sorts of thoughts and emotions.

But if you have mindfulness and awareness of how you are dependent on causes and conditions then no matter what happens you won’t get completely lost or carried away.

PRR

Palace of Care – Sat Sri Akal

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I prepared to see our patient and their spouse. They had been doing well until the past week. Then the weakness and fatigue worsened. They didn’t have the strength to leave the bed. Their spouse looked after them well. Their children were parents too. They were proud of their grandchildren. A close family but COVID-enforced separation had meant they had only seen one of their children once in two years. The same two years that cancer had taken over.

The spouse was worried about sedation from medications. The patient was reported to be in a lot of pain and could use more medication. Breathing was laboured. The patient had not spoken clearly in the 48 hours preceding the admission. As soon as I entered the room I noted the distress on the patient’s face, mirrored by the look of concern worn by their spouse. I needed to establish rapport quickly, as the suffering needed to be attended to urgently. I recognised the traditional turban and greeted them with, “Sat Sri Akal.” A look of surprised appreciation crossed over the spouse’s face. The patient stared blankly at the ceiling in a confused manner.

“They’ve been uncomfortable overnight with pain. I need to do something about it. I’m worried that it isn’t safe to swallow anymore. This is what happens at the end of life when someone is dying.”

“Can I feed them, they haven’t eaten since yesterday.”

“When someone is very unwell they can’t handle the food. They can’t swallow safely and it might end up in the lungs. It might cause vomiting or diarrhoea. I don’t want to make the situation worse or increase the suffering. We need to give medications by injections, under the skin.”

“Subcutaneous?”

“Yes, that’s right. It will be the safest way to give medications, to make sure they go where they are needed.”

“Okay, how much time do we have left?”

“I’m sorry, your spouse is so unwell, they might only have hours to days left to live. They could die at any time. I’m sorry.”

“No, no need to be sorry. It is part of life, it is something that we have to face at some stage.”

“We will do our best to make them comfortable, no matter how much time is left, we will keep on trying. We want to calm down the pain, calm down the breathing, calm down nausea and distress”

“Thank you, doctor.”

“How long have you been together?”

“44 years.”

“I’m going to change the medications now. Please let us know if you or your spouse need anything. Take care.”