Palace of Care – Existence

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Yes, it’s become a struggle, every day.

I get halfway through making lunch then I have to rest. When I finish making it I have to rest again before eating.

Heh, my only entertainment is going to the lavvy. And that’s no fun.

Every time I move I need to go to the toilet. Nothing much comes out and it’s exhausting.

Sometimes I make a mess and that’s even more stuff to clean up. I don’t have the energy.

COVID. I thought it would be the end of me. I was almost disappointed when I recovered.

Don’t get me wrong, if I wasn’t sick like this I’d be happy to continue living, but I have these illnesses. Nothing is going away, it’s only going to get worse.

I don’t want to be here any longer than necessary. This is existence. Not a life.

Blood transfusion? What’s the point? So I can live longer to get worse?

No, I wouldn’t want you to treat a chest infection. Yes, Let nature take its course.

No resuscitation.

Yes, you do understand me. Thank you.

You listen to what I want, nice for a change.

Palace of Care – Doting Children

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“The Oncologist told us they would only live for another three weeks.”

“When was that?”

“Three months ago.”

“The good care you and your sibling provided kept them going. Now they are tired, and their body can’t handle the cancer anymore.”

“We are at breaking point ourselves. We can’t sleep well, and the tears keep coming.”

“You are both very close to your parent, you have looked after them well.”

“The last months had been hard, but the last weeks have been terrible. We have had to help with everything.”

“They are exhausted. Yesterday they told me they thought their time was short, that death would happen soon. I agree with them. We will get them through this, and get you and your sibling through this too.”

“The phlegm is causing them distress, and the breathing. They couldn’t relax last night. The medications helped briefly but then they couldn’t lie still. I kept awake too. They keep on asking for water, but it will go into the lung. Their swallowing is getting worse.”

“If it will make them feel better they can have some water. It won’t make things much worse but might bring them some comfort. If they developed an infection I wouldn’t treat it, as it might be gentler to die of the infection rather than dying of cancer. We’ll change the medications to make them more comfortable.”

“Please do, make them comfortable. Too much suffering already. They were always proud of their appearance but in the last weeks, no energy to do anything.”

“They’ve hated not being able to do what they want?”

“Yes, they even asked about assisted dying. They’ve always been so independent, not being able to do anything for themselves has been awful.”

“Natural death is going to happen soon, they wouldn’t make it through the assisted dying assessment process. They’re likely going to fall asleep soon. We’ll keep them comfortable.”

“Thank you doctor, can we stay here in the hospice.”

“Of course, you all need to stay here, we’ll look after you all.”

Palace of Care – Strongest

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“Hey, long time no see.”

“Hello Doctor, how are you?”

“I’m good, how are you doing?”

“I’m sleepy and tired, that’s what I do. I sleep most of the day and the night.”

“Do you have any pain?”

“No, the pain is well controlled. The urine is still bubbly. Why is that?”

“Your cancer has caused a connection between your bowel and bladder. It’s called a fistula. It’s a sign that it is getting worse.”

“Yes, I am getting worse. I felt so unwell the other day. I thought that my end had come. I just felt so deeply tired. I couldn’t get out of bed for two days. My family and the hospice staff thought I was going to die.”

“Then you woke up again today?”

“Yes, and I’m going to spend some time at home. How long have I got left?”

“I don’t know. I thought you were days away from dying a few times over the past weeks. You keep on proving me wrong, over and over again. You’re stronger than most humans. I think you’re the strongest person I have met in my 15 years of working in palliative care. I don’t know how you do it.”

“I don’t know either. I feel so tired, but I keep on hanging on.”

“You’re being yourself. I wish I could be more accurate with your timeline. You are deteriorating but your willpower is still strong, but your body is fading.”

“Yes, my memory has gone, and I talk to people who are not there, sometimes for a long time.”

“Is that distressing you?”

“No, it isn’t too bad. I can handle it but I get irritated sometimes.”

“Let us know if it gets too annoying, and we can adjust your medications.”

“Okay.”

“You enjoy your time at home. I’ll see you tomorrow.”

“Thanks Doctor.”

I think therefore I am? – When in Rome

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People come from many different places each with its own culture. This includes medical cultures and different ways of dealing with end-of-life care situations. I have talked to visiting New Zealand-trained registrars who had visited relatives overseas. One registrar talked about how upset he had been when he visited his grandmother who lived in a residential care facility in Asia. He knew she had end-stage dementia but was shocked by the number of invasive treatments she received as standard care. His grandmother had refused food and drink which is common in end-stage dementia. In the New Zealand setting, this would lead to a conversation in which the family would be prepared for the impending death of their loved one. The patient would be kept comfortable and nature would take its course. Not so for the registrar’s grandmother who had not been able to consent to any treatments for several years. With the approval of the next of kin, a feeding tube was inserted through her abdominal wall into her stomach. This allowed for liquid meal replacements to be pumped directly into her stomach.

This kept her alive and maintained her quantity of life, but this did not improve her quality of life. She remained unable to talk and could not recognise family members. After the registrar visited his grandmother he was upset and tried to convince his relatives to change the grandmother’s management plan, to allow for her to die naturally. He failed to shift his local family’s thinking, as the grandmother was receiving the standard treatment. The local medical culture was one of preserving the quantity of life at all costs, with no adjustment made for quality of life. The registrar was troubled by the medical culture clash.

Patients and their families may experience a medical culture clash when dealing with our local health system. They may find it hard to accept that there are no further treatments available. Helpful friends and family may make things more difficult with their unsolicited advice. “Back home this would never happen. The patient would be on intravenous fluids, and artificial nutrition, and would be having a lot of investigations.” This can make a stressful situation more so. People try to help but the way they do things may increase stress and suffering. Each case needs to be dealt with individually and with respectability.

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?

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.

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 – Hospice Garden Centre

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“Doctor, I’ve got a fundraising idea for the hospice.”

“Aha?”

“I’ve been going for walks around the garden and there are a lot of nice plants. Some of them you can’t find in garden centres. Has the hospice ever thought about selling plants?”

“No, we haven’t.”

“Here’s a photo of some plants I noticed. They have self-propagated themselves and are growing well. Do you think I could make a donation in exchange for two of the plants?”

“I’ll check with the gardening team, but I think that will be fine if there are a lot of the plants. What are you thinking of doing with the plants?”

“I’d like to plant them in my garden. You’ve all looked after me so well during my admission. I’d like to maintain some connection to hospice even after I am gone. So later on when my children see the plants in our garden they will remember my time in hospice as a good time.”

“That sounds nice. I’ll get our team onto it and we’ll make it happen. Don’t worry about the donation.”

“No Doctor, I must insist. I know my donation will benefit other patients.”

“Okay, Deal made.”

I think therefore I am? – Colours

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Most people have a favourite. Something caught your eye when you were a kid. It might be the colour of your favourite toy. Or your favourite food. It might be the colours of your nation’s flag. Colours are abundant in our world, the different shades make the world more interesting.

People are of different skin colours too. Some of us are white. Some of us are Brown. Black. Yellow, Olive-skinned. Grey. Different but the same in many aspects. Various empires sent their colonists out into the bigger world. The locals were impacted and the trauma that was experienced can be passed down through the generations. A deep lack of trust was ingrained by the actions of colonists toward the natives. This distrust can be passed down the bloodline, leading to intergenerational trauma.

When you are in good health you can tolerate a lot more than when you are unwell. Your baseline fears and needs come to the surface under stress. The uncertainty of their situation can leave a person terrified. The fears from the past can come back, no matter how strong a person had been in suppressing them.

Past traumas can be triggered unintentionally and people may want to avoid situations when they feel at their most vulnerable. People try to remain as independent as possible, and they may struggle in their non-acceptance of help. When you are weak and tired you may try to show your strength by pushing people away. Not being able to toilet or shower oneself may be one such situation. Requiring assistance means the loss of privacy and dignity. Having to be naked in the presence of others is a huge line to cross. Having to admit, “I need help. I am vulnerable.” A nightmare situation for anyone, having to be fully exposed. Add to that the inter-generational fear triggered by someone who resembles your ancestors’ oppressors and pre-existing suffering can be amplified.

Colours can affect us in many ways. Red light means Stop. Green for Go. What does amber/orange mean? Speed up or slow down? Everything becomes a blur of colour. The centre cannot hold, as a human being accelerates towards the finish line. The colour in their eyes faded down to a sparkless stare into space. The light of the person dims as they prepare to leave this plane of existence. Off they go to parts unknown, never to return again.

Palace of Care – Existential Devastation

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I was worried about my patient. Swallowing was compromised. Their thinking was compromised. Oral intake was minimal. More of the day was taken over by the need to sleep. Pain control was still inadequate. They felt so out of sorts, miserable in all aspects of their being. A proud person who had worked hard to overcome many difficulties. Trying harder had worked throughout life. The same attitude prevailed during the cancer battle. Pushing themselves harder and harder, no matter how terrible the side effects or the pain. Sheer determination and willpower saw them through.

This came at the cost of themself. They hadn’t felt normal for a long time. The physical pain could be tolerated but the inner voice of existential distress had become unbearable in recent weeks. It could not be ignored. Nothing felt right. It was not supposed to be like this. They should have been planning for a family holiday rather than their own funeral to ease the burden on the family. A casket had been chosen and of course, it had to be in the favourite colour. Different from most people’s preferences but being different was nothing new. Growing up as an immigrant in a mostly white country you are used to being different.

There was so much that had been planned for the future, the future stolen away by cancer. Cancer took away too much and had not finished. It was taking precious life away, draining the internal battery constantly. The image in the mirror was shrinking day by day. The sense of intactness was long gone. Feeling like themself, was but a distant memory from a bygone era, from someone else’s life. There was still too much to do. The need to get everything just right had always been there, now it was all-consuming. Too many competing priorities and time, precious time, was running out. Too many thoughts smashing against each other in their head. Unable to make sense of it all. The nights were the worst time of all. The long lonely nights were when the thoughts reached their crescendo and then deteriorated into cacophony.

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