The life lessons of dying children

A South African paediatrician’s insights have attracted much attention on Twitter this weekend. Dr Alastair McAlpine asked some of his terminal paediatric palliative care patients what they had enjoyed in life, and what gave it meaning. As listed on his Twitter page, here are some of the responses:

South African paediatrician Dr Alastair McAlpine (photo via Twitter)
Dr Alastair McAlpine asked some of his terminal paediatric palliative care patients what they had enjoyed in life. (Photo via Twitter)

First: NONE said they wished they’d watched more TV. None said they should’ve spent more time on Facebook. None said they enjoyed fighting with others. None enjoyed hospital.

Many mentioned their pets: ‘I love Rufus, his funny bark makes me laugh.’

‘I love when Ginny snuggles up to me at night and purrs’.

‘I was happiest riding Jake on the beach.’

Many mentioned their parents, often expressing worry or concern: ‘Hope mum will be ok. She seems sad.’

‘Dad mustn’t worry. He’ll see me again soon.’

‘God will take care of my mum and dad when I’m gone’.

All of them loved ice-cream.

All of them loved books or being told stories, especially by their parents: ‘Harry Potter made me feel brave.’

‘I love stories in space!’

‘I want to be a great detective like Sherlock Holmes when I’m better!’

“Folks, read to your kids! They love it,” said Dr Alastair.

Many of Dr Alastair’s young patients wished they had spent less time worrying about what others thought of them, and valued people who just treated them ‘normally’.

‘My real friends didn’t care when my hair fell out.’

‘Jane came to visit after the surgery and didn’t even notice the scar!’

Many of them loved swimming, and the beach. ‘I made big sandcastles!’

‘Being in the sea with the waves was so exciting! My eyes didn’t even hurt!’

Almost ALL of them valued kindness above most other virtues: ‘My granny is so kind to me. She always makes me smile.’

‘Jonny gave me half his sandwich when I didn’t eat mine. That was nice.’

‘I like it when that kind nurse is here. She’s gentle. And it hurts less’.

Almost ALL of them loved people who made them laugh: ‘That magician is so silly! His pants fell down and I couldn’t stop laughing!’

‘My daddy pulls funny faces which I just love!’

‘The boy in the next bed farted! Hahaha!’

Laughter relieves pain.

Kids love their toys, and their superheroes.

‘My Princess Sophia doll is my favourite!’ ‘I love Batman!’ (All the boys love Batman).

‘I like cuddling my teddy.’

Finally, they ALL valued time with their family. Nothing was more important.

‘Mum and dad are the best!’

‘My sister always hugs me tight’

‘No one loves me like mummy loves me!’

“Take home message: Be kind. Read more books. Spend time with your family. Crack jokes. Go to the beach. Hug your dog. Tell that special person you love them. These are the things these kids wished they could’ve done more. The rest is details. Oh… and eat ice-cream,” writes Dr Alastair.

The doctor later tweeted why terminal or very sick kids like ice-cream so much.

A few reasons, he says.

a) the cold helps with the mucositis (inflammation of the mouth and gut from chemo)

b) sugar raises the pain threshold

c) ice cream is just awesome.

🍦

 

ABOUT THE BLOGGER: Lisa Herbert is a journalist and author of The Bottom Drawer Book: an after death action plan, an informative and amusing workbook for those who want to prepare for the inevitable. The second edition is available in Australia for $18.95, including postage. You can buy here.

 

 

 

A burial shroud is laid out a Death Doula workshop in Brisbane.

Listening to the dying and giving them a voice too: The emerging role of the Death Doula

There are two types of people in this world: Those who accept they and the people they love will die, and those who don’t.

It’s the latter who don’t want to talk about the inevitable and who label any such discussion as morbid.

But, like it or not, death happens, sometimes too soon, sometimes not soon enough.

Selling my book The Bottom Drawer Book: an after death action plan at the local market soon after its release, I had a woman look me in the eye, scowl and matter-of-factly tell me it was a “stupid idea”. And off she went.

I felt sad that anyone in her life who wanted to have a discussion about death or their terminal illness or their funeral plans wouldn’t be able to. They would be abruptly and rudely shot down in flames.

Thankfully there are people very open to the idea of talking about death and dying. These are the death doulas.

I recently attended a death doula workshop where, for two days, 15 like-minded people learned about the role of a death doula, death mid-wife or end-of-life consultant.

Some were planning to become death doulas while others, like me, just wanted to learn about the emerging service being offered to the dying and/or their families. Death doulas have been around for years, but they’re only now becoming known in more conventional circles.

So, what is a death doula?

First and foremost, it’s someone comfortable talking about death and dying.

It’s someone who bridges the gap between the dying and their families or partners. Sometimes it’s someone who simply helps the dying person to die – holding their hand, explaining things, offering assurances, or simply being there if there is no-one else is.

You see, it’s a challenging and confronting time when someone is close to death. It’s an emotional time that can sometimes see common sense go out the window. Grief fuels sometimes unhelpful emotions and actions, family arguments and confusion. And it’s not uncommon for the wants and needs of the patient to become secondary to the wants and fears of family members.

How often does a mother try to please her children? Let’s face it – when people are nearing death they don’t feel like eating or drinking. They don’t necessarily want their family sitting beside them either, staring and waiting for the next breath to come. Yet the loving daughter pleads for their mum to eat so as to stay strong, hoping for a miracle. But when is enough? When is it time to let go? There comes a time when it simply “is time to die” and the circle of life ends. A death doula can remind family of this. A death doula can offer a balanced eye and hand during these times, offering spiritual care, psychological and social support. They can be someone to talk with.

It’s a paid role. Death doulas are usually hired by the family of the person who is nearing their end of life, but the doula’s responsibility remains with the dying. They’re paid an hourly rate, or can be hired on daily or weekly terms.

A doulas after-death role

If they haven’t already, when the time comes death doulas an also help organise home vigils and home funerals. (Yes, you don’t have to use a funeral director, and the body can be taken home from the hospital.) Doulas can help facilitate discussions with funeral directors and they can ensure that grief-stricken partners aren’t taken advantage of when making funeral decisions.

Awareness of end-of-life consultants or death doulas isn’t widespread and some in the medical profession are yet to be convinced of their worth. But as our population continues to age at an ever-increasing rate, hospitals and nursing homes come under more pressure, and medical staff become busier, the role of those death doulas willing to sit with and reassure the dying, to listen to and speak for the dying will become even more important.

 

Lisa Herbert is a journalist and author. The second edition of The Bottom Drawer Book: an after death action plan is available online in Australia for $18.95. Order here.

I shared my death doula training experience with these amazing people. (I’m 4th from the right)