Palace of Care – Death of an Elder

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A mother, grandmother, and great-grandmother died. This news spread quickly around the world. Condolences were sent from many different countries. Nothing would ever be the same again for her family or their world. An end of an era. She had ruled for many decades and the whole household had to be on its best behaviour. Nothing would escape her notice despite the loss of major senses.

They were constantly reminded of where they had come from and who was responsible for their comfortable lives. She was ancient when her reign finally ended. There would be mixed emotions. Sadness would predominate but if everyone was being honest it would be twinged with some relief.

In her day she had been formidable, nothing could stop her from bending the will of others. The last years had become increasingly difficult. She required loyalty above all. Her body wouldn’t answer the mind’s questions anymore.

She caught COVID from her great-grandchild who had brought it home from a school camp. She survived it with no ill effect. If anything the virus seemed to sharpen her failing cognition.

Too many falls over the years but the last one was the worst. Concussion and almost death. She went into the local hospice and survived for several months after discharge.

We paid our respects with four generations of members gathered to say goodbye to her.

Rest in peace Matriarch.

I think therefore I am? – Navigation

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There isn’t always a map available especially if you are journeying into the unknown. That’s what it can feel like heading towards the end of your life. I haven’t been on the final journey myself but I have been alongside others during their journeys.

It is not my journey, I am not the driver. I am there to act as a guide, to help people through rough territory. I will point out obstacles along the way. I will guide you through difficult passages of your journey. I will keep things as calm as I can.

The ancient navigators had to rely on their skills in order to travel thousands of miles across vast oceans. I will use my skills to help navigate you through your final journey. I will make sure that you are looked after and kept comfortable. My goal is to eliminate as much stress and distress as possible. Your loved ones will also be along for the journey but like me they can only go so far on the journey. The final part of the trip we will have to leave you, but before then we will prepare the way as much as possible.

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Palace of Care – A Typical Day at Work

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I started the day leading our Waiata Group. We gather together to sing songs once a week. My shy introverted younger self would never have imagined doing this as an adult. Public speaking is one thing, but Public Singing is a whole other level of stage fright. Feel the fear and do it anyway. You’re probably wondering why a Chinese guy was leading everyone in singing songs in Te Reo Māori I did it because someone has to and I think it is an important thing to do. We had various members of our teams, from clinical and non-clinical departments, joining in song. None of us was actually of Māori descent. Today we were joined by three special tangata whenua guests. One of our Māori patients and their whānau joined us singing:

Purea Nei

Tutira Mai Nga Iwi

Whaakaria Mai

Te Hokinga Mai

We were not pitch perfect and our Spotify playlist still needs some work. That was not the point though, we were there to learn and to culturally connect. The smiles in the room spilled out into our main corridor, and people passing through were disappointed to have arrived at the end of our 15 minutes of fun and fame.

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A few minutes later I noticed a Superman shield tattoo on another patient’s hand. We ended up talking about Superman and his greatest weakness Kryptonite. The supervillain we were trying to defeat was Mamahi-Man who had caused severe pain over too many long weeks. I hoped that my medications would lead to Mamahi-Man’s downfall. I also asked about the stories behind the other tattoos on his knuckles. He said they had been chosen by each of his children, and each one represented other superheroes. Mamahi-Man doesn’t stand a chance when we have the whole Justice League/Marvel Cinematic Universe and many others on our side.

I think therefore I am? – Good Enough?

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The care we provide can never be perfect. If it was perfect then a person would not be dying. We cannot hope to take away all of the trauma and grief of the survivors. It is not possible. They will be affected by their loss. We can try to decrease it as much as possible, but it cannot be eliminated.

We all take a risk when we connect with fellow human beings. The stronger the connection the stronger the potential loss when disconnection occurs. All things will come to an end eventually, it is just a matter of time. But until the ultimate disconnection comes we make choices. We choose how to spend the rest of our lives.

We put things off and say we will do it tomorrow, or next week or month. Not all of us make it. Working in Palliative Care we see daily evidence of life being too short. We only get one shot at life or death. Make the most of it. Forget about doing the perfect job, instead, ask yourself if your work is good enough. Have you done all you can to make a difference in someone else’s day? Have you shown them that you care? Are you willing to take the risk?

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.