Rant #2. TED talk about doctors and training and death

Hi Carolyn,

Id be interested to know what the better approaches are, but he doesn’t say....

Cheers

Greg

well, I was mulling this over last night, prepare for a 'brain dump'.

I have four kids and therefore I had four goes at getting it 'right', my daughter was by far and away the easiest birth but she had the cord twice around her neck and had I not been so pro active, and a third timer,  she'd have been an emergency C section, thanks to a quick thinking midwife she suffered only mild bruising, she was deep purple when she popped out. 

I will only have one go at a 'good' death. 

I was encouraged to write birth plans, nobody encourages anyone to write 'death plans', why not? Having wandered into the incurables a few times I know that actually there are sometimes posts about getting ones affairs in order, and the funniest, clear the internet browsing history and the sex toys from the back of the wardrobe. People die happier when these things are done and dusted. 

At some point medical science will be able to keep us alive indefinitely and it will be down to us to choose when and how we shuffle off.

I do not want to be confined to a hospice overhearing my family squabbling over whose turn it is to feed me.

"A doula (/ˈduːlə/), also known as a birth companion, birth coach or post-birth supporter, is a non-medical person who assists a woman before, during, or after childbirth, to provide emotional support and physical help if needed. They also may provide support to the mother's partner and family."

My mother didn't live with her own mother, she and her younger sister were left with the local woman who 'does'. That was an elderly lady who had had her own family but was the person everyone called if someone was dying or giving birth, she saw the beginning and end of everyone. I remember my mother telling me that. Every village had a woman like her.  I'm sure there was a film about something similar. I had a quick google but can't see anything. 

...

that's as far as I got

xx

Hi Carolyn,

Warning - I have a bit of a tendency to go off on one when it comes to the subject of death so please don’t read on if you are sensitive to it - your post stirred something in me which swirls around in my brain on a fairly regular basis.

I have a bit of a hate-hate relationship with death. I am yet to find a satisfactory way of thinking about it - I’m hoping I’ll find one soon.

I also oscillate between whether it is a good idea to prepare for it or not. I think writing a will, telling people you love them, doing all the things you want to do, etc are good (although you should do this regardless of whether you are dying or not - which effectively everyone is anyway). But on a psychological level, I’m not so sure whether it is good to think about it. Is the human brain designed to think and plan for its own demise? I have come to the conclusion that I am designed to view death as something that happens to other people. It is probably ego-centricism. I wrote a song when I was 15 called “15 seconds” - it is the idea that you are never more than 15 seconds from death (maybe I have always had a bit of an obsession with it!). So, if we are never more than 15 seconds from death, does this mean that every day, all the time, we are effectively deciding not to die? Or are we ignoring it, or not even thinking about it? If we didn’t want to live, why wouldn’t we take up the 15 second option? So, by definition, doesn’t that mean that it is not natural for us to plan for our own death? Since nobody really wants it (which is different to the birth example you gave). That is why when I was reading the doctor’s article, I was sat there thinking that I would have done exactly what that patient did, and gone for the high risk procedure that offered even a minuscule chance of working. I doubt that I will ever be ready to accept death, and I would rather go out with a bang. Which makes me wonder what the better approaches are that the doctor is referring to? Is he thinking about assisted dying? Is he thinking about taking treatment choices away from patients? I couldn’t quite tell what his proposed solution was? At this point in time, I reckon I’ll keep going until my 15th second is up and not necessarily plan in any great detail for when that might be.

But then another part of me remembers that my death is not really about me, anyway, it is about the people I leave behind. I don’t believe anything so it would be wrong for me to think selfishly about my own death, really what matters is what others think about death after I am gone. So I think about my children. Actually, I would rather not tell them about how desperate my mental state has been/might be in the future, I would rather them just focus on themselves and enjoying their own life. So I need to have a “good” death for them more than anything. “Good” in this context for me means avoiding it until it is no longer possible to avoid it because I cannot think of a good thing to say about it. Ignorance probably is bliss on this subject. Until someone can give me a convincing argument otherwise.

I like the idea of a death partner though, in much the same way as a birthing partner. I am guessing it could be quite a lonely experience so having someone there would most likely be a great comfort.

Thanks for the thought-provoking post!

Cheers

Greg

have you seen Billy Connolly's Big Send Off ?

it's in two parts but he travels around and looks at how different cultures deal with death.

https://www.itv.com/presscentre/ep1week19/billy-connolly’s-big-send#

I'm not sure if that's a link to view or just about it, but I'm sure it is on an OnDemand somewhere. 

The author also spoke about 

https://en.wikipedia.org/wiki/The_Death_of_Ivan_Ilyich

and how he longed to be 'petted and comforted'.

I'm not one for that sort of treatment, I remember several of the nurses attempting to stroke my arms at various stages of my diagnosis.

I don't think I actually snatched my arm away but I don't have a 'poker face' so they probably got the message. 

A death partner or death coach ?? like the birthing coach, someone to shout "PUSH" loudly , having someone to say it's going to be fine, would you like another sip of water ...

I remember looking at my daughters head when she was born and thinking if anything should happen to her I'd like to keep her skull, it's such a perfect shape, that is what happens in one country Billy visits, can't remember which one but the bones of the deceased are returned to the family and if you find yourself in need of advice you talk to the bones. I might be remembering that poetically ...

For me, I read a story on Facebook, or some such, where an elderly lady just kept booking herself on cruises as it was cheaper than care homes. When it all gets too much just fall overboard, after a couple of bottles of champagne ... maybe?

I don't like talking to my husband about finances but the more I do talk about it the easier it gets. He much prefers the head in the sand approach .

Taxes are unavoidable, so it's better to face up to your liabilities .

hugs

Carolyn

Hi Carolyn,

Thanks for the links, I remember seeing a bit of the Billy Connolly show - I’ll have to track down the whole thing.

Your posts are very funny, they make me laugh in all the right places!

Your relationship with your spouse is quite possibly the direct opposite to me. If I talk to wife about finances, the harder it gets!!!!

Cheers

Greg

a family seeking alternative therapies in Germany, mainly homeopathic rather than proton by the sounds of it

https://www.bbc.co.uk/news/health-47442946

"You do not do anything else except get on the plane, go have treatment, come back on the plane," she said.

"That's it. That's your life - no holidays, no family time, barbecues, no happy times."

Gemma's daughter, Penelope, is now living with her father.

"I ask myself should we have done the bucket list and spent the last few months of Gemma's life with her daughter, trying to be happy and make memories?

"But it is what it is, it's done now."

and a new set of stats on what people die of these days ...

https://www.bbc.co.uk/news/health-47371078

What types of death tell us

What people die from changes over time and as their country develops.

In the past, infectious diseases played a bigger part than they do today.

In 1990, one in three deaths resulted from communicable and infectious diseases; by 2017 this had fallen to one in five.

Hi Carolyn,

I read those two articles yesterday. The first one, very very sad. What a horrible situation. When I was reading it I was thinking would I have done anything differently? I doubt that I would. Apart from it’s a non-question anyway as I don’t have the money!

At age 28, I think you are going to throw everything at it that you can, aren’t you? Maybe I am just not at the stage of acceptance yet? But part of me thinks when you are at the younger age of the spectrum, will you be ever at that stage?

All the best

Greg

Deleted 

Thanks Johnty for expressing your views so eloquently.

There are books and radio programmes pleading we need to talk about death and l don't know what the answer is if it raises such animosity in this community.

I think the animosity over the weekend in the 'incurables group' stems in the marked difference between those who are at the end of all treatments and now end stage in their life limiting illness/es and those who are receiving ongoing radiotherapy, chemotherapy, immunotherapy and hormone treatment actively prolonging life. The problem as l see it is threads that open with a post discussing end of life, assisted dying is responded to with a platitude and then turned into more discussions of struggles with treatment. Those of us at end stage want to exchange strategies and support but are being prevented which feels like an extra burden. 

Thank you Johnty I have found  your description of putting death in an imaginary box and closing the lid and how this approach enables you to enjoy life very helpful. 

Hi M-j and Johnty (and Carolyn for that matter)

My own personal perspective is that death is hard for people to talk about, and often anything that is hard is unfortunately marginalised. But it is so important, so please continue to keep on talking about it.

I have thought about death a lot, to the point I decided it wasn’t doing me any good, so it helps me now to shut my eyes to it, and pretend it only happens to other people. I am not sure if you have ever read my “unseeing the bus” blog posts from a couple of years ago? If you type that into the search at the top of the page, it should come up. For me, the bus is death. You can’t unsee it once it has been pressed against your nose, but you can pretend it doesn’t exist. I am fully aware this is a temporary and ultimately foolish idea.

What I will do however is defend everyone’s right to have an open conversation about it, like you say, if you can’t do it here, where can you? And whilst I am not yet currently in that zone, I can understand a preparation for it to be pertinent, relevant and also I am sure with the potential to be incredibly demanding on the psyche. The thread of which no-one shall ever speak of again was disappointing because I didn’t feel like it encouraged openness. For me, you can only have a functioning healthy community when all views are welcomed and supported (as long as those views themselves come from a place of support). I am also aware of how insensitive it is to divert a thread away from its original purpose although I do realise it is easily done, and I have done it unwittingly in the past.

My main hope is that everyone with a desire to support others feels welcome on this site and even if my current aversion to all notions of death is quite strong, I still welcome the debate and discussion about it (hence why I was intrigued by Carolyn’s first post). I find it very interesting and informative to read about the experience of others and share in the wonderful journey of knowledge we call life.

All the best

Greg