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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I think therefore I am? – Duty

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I went to a funeral recently and I was surprised by what the Buddhist Nun was telling the gathering. She talked about the departed having asked her to come and see them. The nun said she had been reluctant to do so as she didn’t feel comfortable seeing old people. I was taken aback as most of the funeral attendants were well past retirement age. I thought the nun had revealed too much of her personal views rather than the professional views for which people sought her out. When one of her temple followers needed her, she had made herself unavailable. I was not impressed by her dereliction of duty.

Everyone is entitled to their personal views and ideas. When they come to see you in a professional setting they are there for your best professional self, and not the personal self which might have different ideas and values. Patients and their families hope to be listened to, to be understood, and have individualised/bespoke care provided. How would you like it to be for you if the tables were turned? What kind of care would you want?

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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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.

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.”

Palace of Care – Chronic

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The chronic illness had been there for twenty years and had disrupted every aspect of their life. It had caused a lot of pain. It was finally diagnosed only four years ago. Treatments were started but never made a significant difference. The effects of many long years of untreated illness were permanent. Somehow despite all of their travails sense of humour was maintained and they had even maintained gainful employment. Others would have been changed into photographic negative images of themselves, but not this person.

They prayed to their God for a way out of the seemingly never-ending suffering. Some years later the prayers were answered in the form of inoperable cancer which at the time of diagnosis had already spread throughout their body. Actual relief was the response when they were given the bad news. That’s how bad quality of life had been. They had considered accessing the Assisted Dying service but thought it would be against their religion. Their end was in sight, cancer would provide a natural escape from suffering, but it still felt far too slow…