The trip home was great. He enjoyed it a lot. I was happy that I could help make it happen. He had not been home for weeks. Spending a few hours at home meant so much to him. He kept his eyes open the whole time, enjoying things as much as he could. Being able to see our home again was so important to him and to our children. When we came back to hospice he was exhausted but kept on smiling.
A lot has happened this week, he only stopped working on Monday. He had to tell his boss that he couldn’t work anymore. A big deal for him as he dedicated so much of his life to work. If he didn’t work he just didn’t feel like himself, it was the cause of a lot of our disagreements.
Yes, our church father did visit and anointed him. He can be contacted at any time. How much time do you think he has left? Only a few days? That’s what I thought. Please keep him comfortable, that’s all we want at this stage of his life.
The blood tests were all deranged and matched what I had found on examination. She was dying. I maintain a no surprises policy. I don’t want my patient or their loved ones to be surprised by sudden deteriorations which could lead to death. They needed to know. I had to tell my patient and her gathered family what I feared was happening.
“I’m worried that everything is getting worse. If this continues I think there might not be much time left, maybe only days. I’m sorry to have to discuss this. I think you are dying. I’m going to try my best to keep you comfortable. We haven’t tried the steroid treatment before. I’m hoping that it will help you feel more comfortable.”
My patient was too weak to talk, her face was covered by a towel. Her family said they understood and thanked me for telling them what was happening.
“I’m sorry this is happening, I wish I could stop it.”
I was surprised when my patient reached her hand out to grasp mine.
She said, “It’s okay. Thank you for helping me.”
I swallowed hard and promised I would keep on trying to make her comfortable.
As soon as I left the room the family made arrangements for her child to come in from school. They had to prepare him for what would happen.
Our gathered experience and that of other doctors told us that people with her burden of disease would not be expected to still be alive.
When she had been admitted it was thought she might only have days left to live.
She had proven us wrong over and over again in the past weeks.
How was she doing it?
How was she staying alive?
None of us could explain it with our science.
It would be up to experts in other disciplines to explain what was happening. Experts in fields such as survivalism, spirituality, true love, and gamblers who specialised in beating the odds.
It is rare enough for one person to beat the odds once, but for three different women to beat the odds three times, it might’ve been easier to win the lottery.
What did they have in common?
They were loved by their families. They did not want to die. They had life-limiting illnesses which would rob them of time too soon.
They were all mothers, two had children who were on holiday from school, and the other one parented a boy who despite marriage had yet to grow up.
What differences were there?
Two of them had almost died prior to their admission to our inpatient unit.
They all had different pains, the physical aspects which we controlled quickly. If only the non-physical aspects could be controlled as easily.
Two of them had poor appetites but forced themselves to eat. The other one was ravenous but had trouble swallowing.
One of them was too scared to leave her room let alone venture home. The other two enjoyed sunbathing and wanted to spend as much time at home as possible.
Two of them wanted to cling to life for as long as possible. They were willing to do anything to stay alive. The other one had been approved for assisted dying but might or might not go through with it. She just wanted to have the option in case her suffering became intolerable, by her definition.
Two of them held on to hope and celebrated every little victory. The other one had made difficult but practical decisions for the shortened future she had accepted.
One of them had lost her mother many years ago. Another’s mother visited often but disagreed with her use of medications to prolong life. The third mother could not bear to face her daughter’s harsh reality and refused to fly over to meet her.
All three had deteriorated during their admission, making us think they were approaching their end of life. They had all recovered again to some extent, but their overall condition continued to fluctuate wildly.
What was going to happen next?
Impossible to predict, but time would likely declare the outcome for each of the ladies over the next days.
“How long have they got left to live?” This is a question I am asked at least once a week. There is no way I can give a completely accurate answer but I try my best to give an approximate time period. Months to years. Weeks to months. Days to weeks. Hours to days. These are the standard replies I give, for the weather forecast they have asked me for.
Over the years I have had a lot of practice. My educated best guesses have come closer thanks to lived experience. I am often wrong as there are too many things that need to be included in the considerations.
“Should I call the loved ones in?”
Better they come and visit too early, than too late. See them while they are still able to talk and interact.
I don’t know what will happen tomorrow, let alone next week.
I will try to give you as much warning as possible, but sometime I may be caught by surprise myself. The final deterioration may not announce its arrival. It might sneak up on everyone, including the person themselves.
I’ll keep on trying my best, but I don’t mind being wrong when it comes to prognostication.
“Ma’am if I had known that your husband would die within three days I wouldn’t have sent him anywhere. I would’ve kept him in hospice and looked after him. I’m sorry we decided to transfer him as we thought he still had weeks left to live.”
“It was hard to understand after all he’d done for hospice.”
“I am so sorry, I wish I could’ve known exactly how long he had left. We could only make the best decision we could with the information we had at the time.”
“We found a place for him and they admitted him into the hospital section. They didn’t have a bed for him, only a mattress on the floor. He went in on Friday, and he died on Monday, still on the floor. A horrible place. I’m not surprised they are not doing well.”
“I’m very sorry.”
“It’s not your fault.”
“He was a lovely man. During his first admission, I thanked him for what he had done for hospice.”
“He was the loveliest man. He wanted to help out our community.”
“He certainly did that. Thank you for your ongoing support over the many years.”
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.
She had told her family about my promise to paint my fingernails to match hers. She had painted her nails to match my bright yellow scrubs. When I examined her fingers the nails were of many different colours. Some were yellow, others were black, pink, and red, all of them nicely painted. She showed her nails and she made us all laugh. This included both staff and her own family. I joked about needing help with nail-painting supplies, as I didn’t usually paint my nails. If I was going to do so then I might as well do my toenails. I shared with our audience that my yellow nails would go down well at the Brazilian Jiu-Jitsu club I belong to. We all shared some more laughs before we came to the serious part of the family meeting.
I provided a recap of what had happened since our patient was admitted. She arrived with terrible pain, nausea and constipation. These symptoms were controlled with adjustments in medication doses over the first week. Well-controlled pain came at a cost. Our patient became confused at times. We had to make dose changes but we wanted to persevere and bring down the pain levels as much as possible.
Overall the pain and nausea improved but the confusion episodes worsened. We tried to prevent further episodes to no avail. I talked about the ongoing changes in her situation. Old problems became worse while new problems developed. We were trying to play catch up with a disease process that wouldn’t stay still. She had been having ups and downs due to medication effects but mostly due to worsening cancer.
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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