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.
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.
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.
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.”
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…
“You have to be special to work in Hospice/Palliative Care.”
“I’ve developed specialised skills over many years of training and practice.”
“You’re an angel.”
“No, I’m human just like you are. I have feelings and I am affected by what happens to the people I look after. I’ve learnt how to handle it, but it has taken a lot of work to be able to do so.”
“I don’t know how you do what you do. I couldn’t do it.”
“Well some days I can’t do it either, but those days are few and far between. Dealing with death and dying on a daily basis can be stressful. Self-care is essential as is team care. Wellbeing practices have become part of my daily routine.”
“Working in Hospice/Palliative Care must be so depressing.”
“No, it isn’t. Sure we see more than our fair share of tragic situations but we can still make a difference. How would it have been for the patient and their family if we hadn’t been there?”
“What do you enjoy most about your job?
“Seeing patients and their families. Having a laugh with them.”
“What’s the most important thing you can do for your patients?”
“Listen to them. Find out what they need. Find out what goals they are still trying to achieve, even at the end of life.”
“I’m going home to spend time with my family, to see my children at home.”
“Will you be doing any cooking or cleaning?”
“No, I learnt my lesson last weekend.”
“You did too much?”
“Yes, I didn’t think to ask for help, I wanted to do the cooking all by myself. It used to be so easy. If I had allowed them to chop some vegetables I wouldn’t have been so tired.”
“It was a struggle wasn’t it?”
“Yes, I became irritated and grumpy.”
“You can certainly go home on leave but I don’t want you doing any work. You are there to rest and spend time with your kids. I don’t want you doing the housework.”
“I’ve had to let it go. After I am gone they will be in charge of the house and do things their own way.”
“It must have been hard for you to let go.”
“I don’t have much time left or energy.”
“You’re human, not superhuman.”
“Yes.”
“Are you going shopping again?”
“Yes, I have to buy clothes for the children…for them to wear to my funeral.”
“Buying the clothes sounds important to you.”
“I’ve always wanted them to look good. It’s important to look your best at all times.”
Our patient was dying and we had prepared her family for her imminent death. Their Imam had visited and they had already engaged the services of an Islamic funeral director. Their custom was for the body to be buried within 12 hours or before sunset. The timing was important and we wanted to avoid any hold-ups if possible. s
The eldest son had a special request. His mother had a stoma in place, this allowed solid bodily wastes to be collected in a small plastic bag. He asked if our staff would be able to sew up the stoma after death. He said their tradition was for the body not to have any foreign objects present. The funeral director had already told them that they could not help with this post-mortem procedure. The concern was there would be soiling after the stoma bag was removed. They wanted everything kept as clean as possible thus sewing up the stoma would prevent it from leaking.
I asked my medical team but no one available was keen to help. I would’ve been happy to come back to suture up the stoma myself but I was due to leave for an overseas trip the next morning. I asked around our other staff and three nurses with suturing experience put their hands up.
Our patient died the next day and her stoma was neatly sewn up by one of the nurses before the funeral director came to collect the body. The family were grateful and were able to bury within their customary timeframe. I was proud that our team had been able to help the family in their time of need.
“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.”
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.
palliverse.com 