We never met the social butterfly of the workplace who made an effort to make everyone feel welcome and included. The young lady who made everyone at work laugh. The person who befriended everyone and even their partners.
Life can be too unfair for some people. A room full of flowers, teddy bears and heartfelt messages. The love in the room was palpable. The care they provided to our patient and to each other was beautiful.
We only met her when she was critically unwell. When the illness and medication side effects had made it too hard for her to be fully herself. In so much pain that she couldn’t do the things she wanted to. Her body too distressed, making everything a struggle. Moving around the room became exhausting for her.
By the time she came to stay with us the talented artist was too fatigued to produce any artwork. The music fan with no favourite genre lacked energy to listen to her favourite songs. Not enough breath to sing along with.
Cancer can be a cruel illness that takes too much away. Potential snuffed out with too much finality. Opportunities taken away much too early. She never had a chance to grow old. She never had a chance to explore the world. Taken away in her prime, she has missed out on too much.
Some cases are just so much sadder than others. We have to look after ourselves just that little bit more. We have to be proactive in looking out for each other even more. The team looks after people well but we need to look after each other as well.
We can hardly imagine what it feels like for the parents to lose their daughter. For the siblings to lose a sister. For the grandparents to lose a grandchild. We try to understand but we don’t really know what it feels like. Taken away too soon. Our patient died and a butterfly was affixed to the door of her room.
For those of us working in Palliative Care, we must remind ourselves that we are only briefly there in our patients’ lives. We might only appear briefly in the final chapters if it was a book. We have a small part to play in a person’s life as a whole. We provide episodes of care which usually end with the death of our patient. Mostly this is also the end of our relationship with the patient’s loved ones. We make our decisions, offer our suggestions and give our advice before leaving for the day. Our involvement may be as short as hours to days, sometimes weeks to months, but it is a small period.
The patient and their loved ones have to live with their decisions for the rest of their lives. In the case of the patient, only a short time. For their family much longer. They have to do what is right for them. To make sure they have no regrets. To make sure that everything has been tried to keep someone alive.
Even after 15 years of full-time Palliative Care work it is still hard to step aside and let someone do something that you disagree with. You are confident you can control their severe symptoms, to provide comfort, but the patient and/or family are not wanting to buy what you are selling.
No one likes being rejected. To have their best attempts at helping not accepted. For alternatives to be chosen instead. It is hard to witness suffering and not do anything about it.
I want something else. I want to follow someone else’s recommendations.
I want to help you. I really want to help you. Please let me help you.
No. Thank you. I need to do this. We need to do this.
Don’t take it personally. You hardly even exist in their lives. It’s not about you. It’s about them, and what they want to do with what little remains of their life. They want to call the shots. To take control. Even if the only control they can take is a refusal of treatment. They are making one of the few choices they have left. It’s not about you. It’s about them. What is important to them? What is right for them?
I’ll get out of your way then.
It’s not like that.
Yes, it is. I’m getting in your way. I’m holding you up from doing what you need to do. You know where to find me if you change your mind.
It was important to keep on side with them, to show that we would listen and allow them to take part in the decision-making. That we meant what we said. You are the driver, not me.
Our patient might’ve suffered more than they had to but it was the right thing to do for them and their loved ones. They did what they needed to do. So they could live with their decisions, for the rest of their lives.
Being able to do whatever you want is something that we take for granted. Even simple things like walking would be greatly missed if we can no longer do them. Taking out the trash can be a burdensome chore, but you’d likely miss doing it if you couldn’t do it anymore. Wanting to go home but not being able to is something I have learned about over the past week. A cancelled flight was the cause of my homesickness. Patients may be too unwell to go home or anywhere else. Staying in hospice for end-of-life care. A trip outside to the garden can be in the too-hard basket. To be able to mow the lawn again would be a luxury for some people. To be able to wash and feed themselves would be a treat.
The loss of independence and assault on a person’s dignity. The heartbreaking moment when they realised that they cannot toilet themselves without assistance. The losses accumulate as the illness worsens. Every loss is grieved for, some for longer than others. Not being able to do what you want to, not being able to be who you want to be. Most of us have no idea of what real loss is. Quality of life is defined by each person themselves. People can get to the point when they no longer wish to live their current life. When they have had enough and are ready to die. This has usually been after a long period of consideration. They desperately wish to escape their current confinement, the prison of their own body. Each person has a limit, a point at which they can no longer tolerate the suffering of their situation. You can always tap out in Brazilian Jiu Jitsu training but in real life, it is not that simple.
Chinese New Year is a time for family to gather. People make their way home from all over the world for a chance to catch up with each other. It’s a time for the annual family photo, making the most of the opportunity when everyone is there together. A rare occasion these days to have the children and the grandchildren altogether in one place at one time.
Looking back the old photos tell a story of a family’s life together. Over the years the pictures change. The parents get older. The children grow up and become parents themselves. The next generation is welcomed. The family dog looks less and less alert. The first grandchild is joined by another. A few photos later and there are more babies. The family dog disappears from the photos. The children look more tired and world-weary. The grandchildren look taller in each new photo.
The photos of the past three years looked different as many families could not gather for their annual reunion. Replaced by screenshots of virtual gatherings. Better than not seeing each other at all, but not quite the same due to lag and other factors. Not being able to taste Grandmas’s signature dish, her stir-fried rice vermicelli. Not being able to eat New Year Cakes together. No red packets could exchange hands.
As time goes by the photos will change even more. The grandparents start to look elderly. The parents start to have grey hair. The young ones may not be able to make it back due to university or work commitments. The eldest grandson proudly presents his grandparents with the first red packet he earned himself in his first year of working. Pure pride beams in the smile of his grandmother as she receives the auspicious gift.
People start to disappear from the photos as health issues start to wreak their havoc. One of the grandparent’s faces looks different after the stroke. The following year there is a gap in the space where one of the parents always stood. Two of the grandchildren will have to finish growing up without one of their parents.
The family tradition will persist. The gathering, the family meal, followed by the family photo. The life changes will continue to occur and will be writ on the faces of those photographed. The ups and downs of the year. The challenges encountered, the successes and failures. What we have gained and what we have lost all feature in these family photos.
We thought his wife was dying and we needed to prepare him.
We weren’t the only ones who had done this.
We heard the Oncologist had told them she would only have three months left to live, but that had been five months ago.
We thought she would die six weeks ago when her mind became less clear, so we prepared her husband for death within days. The same afternoon she went out shopping for furniture.
We thought she would die four weeks ago, again her mind had become less clear, so we prepared her husband for death within days. The next day she went out shopping for clothes for the children.
Two weeks ago she thought she was about to die, and we agreed. She fell asleep and we thought she wouldn’t be waking up again. Again we prepared her husband for death within days. Two days later she woke up and wanted to eat something.
At the end of last week, she thought she was about to die, and asked her husband to bring the children in. We thought this time she had to be right and prepared for her death. Somehow she carried on but became less conscious over the rest of the week.
Her husband had thought he had prepared himself and the children as well as he could.
He thought she was sleeping, but the nurses who came in for the routine check and bed turn found that she had died.
Everyone had been prepared for her death but when it happened it still hit hard. The brains were ready but the emotional hearts are always slower.
For almost six months we had worked on connecting with our patient in order to help her. We had listened, negotiated and flexed in order to earn her trust. The sudden disconnection took us all by surprise as the strong one had finally completed her long final journey. Off to a better place with no more suffering.
Life-limiting illnesses are associated with many losses. Loss of control is one of the worst losses of all. As the condition progresses the losses continue to accumulate and some may be worse than others depending on each person. Things that were taken for granted are missed greatly and some of the losses can be especially cruel. Each of them is grieved over.
She loved to talk and would chatter away from morning to night, until the last months of her life. Her friends couldn’t recognise her voice when they phoned each other. Her voice sounded as hoarse as a young pop star before rehabilitative larynx surgery. Her breathing worsened and she wasn’t able to produce the volumes she was used to speaking at. As the weeks went by her voice played hide and seek and became harder to track down. Only a whisper was left, and even her family couldn’t understand what she said at times.
Today tragedy leaked from the internet and into my home and many millions of homes all over the world. 23-year-old Minecraft YouTuber Technoblade has died. He had written the last message to his fans only eight hours before he died. He had asked his dad to read out his message on this video. If you watch the video make sure you have some tissues at hand.
Technoblade was diagnosed with cancer in August 2021 and continued to post his popular videos even whilst undergoing various cancer treatments. With his usual generosity, he continued to share his entertaining insights with his 10 million followers.
Millions of ‘kids’ all over the world have learnt about the reality of life with cancer. Today they have experienced the death of someone who they may have gotten to know over many years of watching his videos. Grief has appeared on their drop-down menus, and they may not know how to deal with these unknown feelings. A huge reality check has occurred and the stark difference in real life is there is no respawning.
An online companion can no longer keep them company. Loss of life has led to a loss of childhood innocence. Please take care of your kids as they mourn during this sad day on the internet.
“NSW residents will have access to the highest quality care and pain management services at the end of their life, with palliative care and specialist health services to receive a record $743 million funding boost over the next five years. Premier Dominic Perrottet said the 2022-23 funding boost is on top of the $300 million the NSW Government invests each year in palliative care.”
In Aotearoa New Zealand we have to use milk and honey to make fundraising bake sale items. It is ridiculous that health care institutions have to count on sales of Chocolate Brownies and other baked goods in order to maintain free services to eligible patients in the community they serve. Literally having to sell baked goods in order to try to save staff jobs. We really do need a hand here, as we don’t want good patient care to have to depend on our baking supplies.
“Sorry Mrs Smith I can’t admit you because we have run out of flour. I would like to see you in the outpatient clinic Mr Kim but we can’t find any cocoa.”
Where is the kindness for some of the most vulnerable in our population? Palliative Care is not just about end-of-life care, but the care that is required in the time leading up to death, which might be 6 to 12 months or even longer. It is not just physical care that is required but psychosocial/spiritual/cultural care as well. The dying members of Aotearoa’s population deserve to be treated better.
“Sorry Mrs Ihaka, you can’t come become a hospice patient because we ran out of vanilla essence.”
What if hospices had to reduce services or shut down?
Who would care for all of the patients and families that we help?
Would the already over-stretched hospital sector be able to cope?
Reincarnation was one of the topics of conversation in the first room this morning. Our patient was a believer and had told his wife that she would come back as a dog. Unfortunately one of their daughters had died only a few years ago. It is always difficult for parents to deal with, as it goes against nature’s order to have a child die before a parent. One of the tragedies in life that elderly people would like to avoid if at all possible. Their daughter had died but had left her traces everywhere.
She had always loved butterflies, and had grown lots of swan plants in order to provide food for her favourite Monarch butterflies. She had a keen eye for their caterpillars and could see them from a distance, their yellow, black and white lines indicating their presence. She especially loved the pupae/cocoons that would form as the caterpillars went through the biggest changes in their lives, metamorphosis. Coming out the other side of the process transformed, with a new outlook on life and the ability to fly. Looking so different in colour scheme and features. She had always loved to have butterflies around. In some cultures it is believed that butterflies are visiting dead friends and family members who have come to see you from the other side of the grave. This is a comforting thing to have your ancestors come to see how you are.
Our patient had been steadily deteriorating over the past week, and he and the family had derived some comfort in being visited by Monarch butterflies. It was thought that their late daughter/sister was visiting their father as he entered his final cocoon state, just before dying. I told them that when people die in our hospice we would affix a butterfly to the door.
I have often drawn cocoons on our patient list board to indicate that people are undergoing the final transformation in their life, the dying process. One in which everything starts to wind down, the heart, lungs and other organ functions change. A person becomes sleepier, and less clear in their mind, Nature or a higher power’s way of protecting the dying person from the full experience of dying.
“Please keep on talking to him, he can hear you, but might not be able to respond to you.” Family members were considering leaving for home to come back again soon, but I advised that he could die at anytime, and that traveling under lockdown restrictions was not as easy as usual. Probably better to hang around and support each other for a few more days.