A story for Relevant readers: Uncle Hiro and the Runaway

Uncle Hiro, in his late eighties, is a beloved elder. He has advanced lung cancer no longer responding to treatment. His youngest relative is watching matters very carefully.

Uncle Hiro is very old. He might be a hundred. He lives in a house with lots of old people. They all smile when I visit. I am Kiri, and I am nearly nine years old.

Hiro knows that his life-expectancy is limited. How short? Well, that’s question we doctors get asked frequently, and the truth is that we’re never very good at predicting. Here’s how we ‘guestimate’:

As aging or illness progress, the rate of energy loss is our best predictive tool. As life wanes, energy levels drop until we can see changes month by month (suggesting life expectancy down to months up to a year or so); later week by week (life expectancy now weeks into short months); then day by day (days into a week or so); and eventually hour by hour (very short). So as death comes closer, predicting gets more accurate.

Uncle Hiro had a bad cough. The hospital gave him medicine and shone X-ray beans at his chest. I don’t know what kind of beans they are. Uncle Hiro lost his hair, but I like his shiny head.

Yesterday an ambulance took Uncle Hiro to hospital. He doesn’t want to stay in hospital. He says he wants to go home to be with his old people friends. I think he is missing their pet rabbits.

Being able to recognise when death is approaching enables us to have important conversations. Where does the person want to die? Do they want to carry on having treatment that may cause uncomfortable side effects yet offer very little benefit? Would they want key people to know that time is getting short? Who? Are there important cultural, spiritual or religious practices they would want to observe?

Dad and Mom were whispering in the kitchen. Then Mommy called me in. She said she needed to tell me Something Important.

‘Uncle Hiro is very sick,’ said my Mommy. ‘He is so sick that he may die. Do you know what that means?’

Other people’s Moms do interesting jobs like police officer or driver or shop keeper. My Mommy looks after dying people. She’s a dying people nurse. I know what die means. When our cat died, we dug a hole. I wonder where we’ll dig a huge hole for Uncle Hiro.

Telling children about death is important, but uncomfortable. We want to protect them from sadness, yet prepare them for life. Children’s ability to understand concepts like time, permanence and universality develops over the years, so what we say about death will be received and processed differently depending on the age of the child.

Mommy looks puzzled when I ask about digging holes. Then she tells me we are going to visit Uncle Hiro but he might not be able to talk to me.

‘Why not?’ I ask her. Uncle Hiro always talks to me. Even when he is too breathless to talk to anyone else, he sings songs to me.

‘Uncle Hiro’s body is getting ready to die,’ she says. She’s using her Explaining Things voice. ‘When people are getting ready to die, they become sleepy and they don’t wake up to talk to us so often.’

She waits a bit. She pretends to cough into a hankie but I know she’s wiping her eyes. She always pretends she’s not crying when she is. She cries when she’s happy and when she’s sad. She’s a crier.

Kiri’s Mom is helping to explain the process that we see as normal human dying proceeds. Just like pregnancy and birth, dying is a bodily process that has recognisable phases that progress in a more-or-less predictable way. Diminishing vigour; need for extra naps to restore energy for a while; periods of waking that gradually become shorter, and sleeping in between that gradually lasts longer.

At some point during this phase of alternating sleeping and waking, there is an invisible change when sleep becomes so deep that the person is actually unconscious for a short period of time. When people waken again from their sleep, they do not notice that they had been unconscious; it seems we don’t find coma frightening or unpleasant.

Keeping control of any symptoms may now require change from medications by mouth to use of injections or skin patches. It’s worth mentioning, though, that many dying people have no symptom other than overwhelming weariness.

‘I don’t mind if Uncle is sleepy,’ I tell her. ‘I know all his songs now. I can sing them to him.’ Mommy wipes her eyes again.

During the process of dying, bodily functions gradually shut down. This is normal. Eventually, the only part of the brain still functioning is the respiratory centre, which enters ‘automatic mode’ that alternates soft, panting breathing with cycles of deep, noisy breathing. It’s important that families understand that this noisy breathing is the equivalent of snoring during sleep: it’s not a sign of pain or distress.

Uncle Hiro looks funny without his glasses on. His eyes are closed, but his mouth is open. He’s snoring. It’s a loud snore, and it makes me feel a giggle in my tummy.

When Uncle Hiro stops snoring, just looks asleep but I can’t hear his breathing. Then there’s an enormous snore, and off he goes again. He sounds like the Runaway Train in his song. He would laugh if he could see.

Unconscious people will breathe in and out without clearing their throat, and this causes air to bubble noisily. Sometimes called the ‘death rattle,’ this noise can perturb families at the bedside, yet it indicates deep unconsciousness. It’s another sign that normal, gentle dying is proceeding. So are cooling skin, blue-tinged fingertips, pale lips.

Dad helps me to sit beside Uncle Hiro. He asks if I’d like to kiss him goodbye. I kiss his nose – it’s really cold.

Mom asks me if I still want to sing. Of course I do. I sing The Lonesome Pine and Silver Bells and Uncle Hiro goes quiet again. To listen to me.

People who have been unconscious during severe illness often report hearing the voices of their visitors. Palliative care staff encourage families to chat to their dying relatives, and to each other around the bed, to offer that comfort of familiar voices.

I dreamed about our old kitty last night. She died when she was very old. When I woke up this morning, Mommy told me Uncle Hiro died as the sun was rising. She told me he just breathed out. Then no more breathing. Just like our cat.

I hope Kitty is pleased to see Uncle Hiro again.

And there it is. So dreaded, yet so simple and uncomplicated. A last breath out, during one of those gentle parts of the automatic breathing cycle. Sometimes so gentle that it takes a while for the watchers to realise that breathing has stopped.

And not a ventilator machine in sight. Because accepting dying avoids prolonging its process, offering comfort to the patient and participation in a gentle transition to families.

Kiri won’t fear death; she will understand what to expect, thanks to her wise and experienced Mommy.

Excerpted from the book WITH THE END IN MIND by Kathryn Mannix. Copyright © 2018 by Kathryn Mannix. Reprinted with permission of Little, Brown and Company. All rights reserved.