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 cemetery wanderer, journalist and author of The Bottom Drawer Book: an after death action plan, an informative and amusing workbook and funeral planning guide for those who want to prepare for the inevitable. It is available in Australia for $24.95, including postage (Additional postage of AU$9 is payable for overseas orders). She enjoys telling the stories of the dead because they reveal so much of our history and way of life.

Lisa Herbert is a journalist and author

Advance care plans and Facebook legacy contacts: new additions to The Bottom Drawer Book’s second edition

It’s become increasingly obvious there are many people who are keen to be a prepared for the inevitable, even though that may not be any time soon. They also want to take the pressure off their loved ones when the time comes. Western society typically labels any  talk about death and funerals ‘morbid’ but, thankfully, that antiquated idea is slowly changing.  You see, the first edition of The Bottom Drawer Book has sold out and I get emails from people telling me how it has helped them.

“Our 22 year old son is dying and while we have generally discussed his wishes, this book will make things easier. I have ordered 4 books for all the family so we can all sit down and fill in our books together so that our beautifully amazing son won’t be the only one making the hard decisions and we can make it light-hearted and fun. Thank you for making a difficult discussion so much easier.”

I’m not going to lie. I cried when I got that email. Humbled almost beyond comprehension, it made me so glad I followed through on a crazy idea to write an after death action plan.

Three years later and the second edition is out. There are only a couple of changes.

Advance care plans

I’ve included a section on Living Wills. In other words, these are simply your plans for your future medical care.

The Royal Australian College of General Practitioners estimates one in four of us will not be able to make medical care decisions as we near our end of life. That’s where what’s called ‘advance care plans’ come in. It’s a list of your wishes, including who you want to talk to your doctors on your behalf, if you’re too out of it to make any sense. Your plan can outline what procedures you want or don’t want eg. do you want to be resuscitated? Do you want feeding tubes removed? It can outline where you’d prefer to die and even if you want your dog or cat with you.

While advance care plans aren’t necessarily legally binding they will help your doctors and family make health care decisions if you can’t. Each Australian state and territory have different regulations and terminology when it comes to care plans and health directives so ask your GP or local health care about them. There’s also some good information online. This website HERE has links to each state’s documents. There’s also info about appointing an enduring power of attorney or enduring guardian. The person or people you nominate for this job can make financial, lifestyle and health decisions on your behalf if you’re not well enough too.

Facebook legacy contacts

The second edition of The Bottom Drawer Book also includes some updated information from Facebook about what happens to your Facebook page if you die. As mentioned in the first edition, you can choose to have your page deleted or memorialised. Having your page memorialised means your page becomes somewhere your friends can share memories and leave comment. Facebook has now also introduced the ability for you to nominate a legacy contact who takes control of parts of your Facebook page. That person won’t be able to see your messages or delete any of your content or friends, but they can post updates (such as funeral information), change your profile picture and accept friend requests.

We live so much of our life online these days that when we die there’s an awful lot of information, photos, blogs, videos etc that will be left orbiting cyber space. You have the ability to manage what happens to all that stuff. All it takes is a little preparation, and that’s where The Bottom Drawer Book: an after death action plan comes in. It costs $24.95 which includes delivery within Australia.

Boxes containing The Bottom Drawer Book

ABOUT THE BLOGGER: Lisa Herbert is a cemetery wanderer, journalist and author of The Bottom Drawer Book: the after death action plan an informative and amusing workbook and funeral planning guide for those who want to prepare for the inevitable. The second edition is available in Australia for $24.95, including postage. You can buy it here.

Lisa Herbert is an author and journalist.