Riding the Rollercoaster – Knowing When to Stop #52

cardiac arrest

I decided to share these thoughts with you after a couple of recent conversations.

The first, with a long-term colleague I worked alongside who is now retired.

It went something like this:

My outlook is good: 75 out of 100 women with stage 2 Cancer are still alive after five years . We talked very positively about the impending radiotherapy & my relief of not needing chemotherapy.

life or death

We chuckled at the irony, given what I do for a living, as well as my personal values that, as a promoter of informed choice & the right of a person to say no if they want to,  I found myself presented with apparently no choices!

 

We also had a bit of a grumble about the common problem of health professionals rarely explaining to a patient that doing nothing is also an option. The Ask 3 Questions model which is now well established in some parts of the UK was based on a model developed in Australia which actually asked 4 & guess what the fourth one was! Admittedly one may not like the likely result of doing nothing especially if it is a fatal decision, but still, it should be discussed.

Many people baulk at the very idea that someone may decide to do nothing when there is something which might be done! It’s a reasonable expectation amongst health professionals, relatives, friends etc. even the person them self who is diagnosed with a potentially life-limiting or threatening condition; that the “patient” will want to have treatment (after all, why wouldn’t you?).

mad clock

In the UK where I live, even while it wobbles along & is under increasing threat & stress, the NHS gives the population greater opportunities to stay well, get help when we need it & even extend our life expectancy.  This is, of course a wonderful thing.

Except when it isn’t.

Everyone who has ever loved another human & values them will have had to or will have to face a time when that special person, is beyond rescue.

Everyone dies eventually.

*Death is not personal. It doesn’t discriminate, nor is it of itself a bad thing if you stop & think about it calmly. It really doesn’t matter what the circumstances are: sudden, irreversible illness, unexpected, expected, peaceful, a happy release, traumatic, torn away by violence or war, senselesss accidents,  lives barely lived (sometimes not at all) or long, fulfilled & contented; the pain of the loss of that loved life is very personal & our grief, even though it is shared by others, the impact is unique to each one of us ;the ones who are left behind.

In countries where for whatever reason life is very harsh, perhaps lives are even “cheap”:        where access to healthcare is dependant on relative wealth or is just not available there may be more of a sense of  a resignation or acceptance about death. but still, I am certain, it doesn’t hurt any less for all of that…death_with_kitten___discworld_by_wichrzyciel-d3lit1x

The next conversation I had was with Blodge.

It started with us discussing why people approaching the end of life so often get rushed in to hospital & whether it is the right thing to do. I could write a dissertation about this (oh wait I did!): relax, I’m not going to do that here.

In simple terms here are some things to think about:

  1. Until the advent of the NHS pretty much everyone died in the community.
  2. Then the NHS took on the role of end of life care – sort of, arguably what it was actually doing was it’s best to find ways in which to reverse death (if you had a massive bleed which would kill you if it wasn’t stopped, then that makes perfect sense).
  3. As surgical techniques, antibiotics etc. advanced, people who perhaps 10 years previously would have been dead could be saved – fantastic result overall.
  4. More of us are dying in hospital each year, and yet in conditions where the progress of a disease can be slowed, but not halted or reversed a time will come when, apart from being kept comfortable there are no more rabbits to be pulled out of hats to thunderous applause. This, Dear Reader is when it is time to stop

Those who are fortunate enough (and use the words advisedly) to know that their time will be eventually, or is now limited, have an opportunity to seriously consider what their priorities are going to be. Of course, some individuals might feel more comfortable, safer dying in hospital – while others (including me) would want to step back from being medicalised & concentrate on the important things in life.

-hospital-cleaning1If I had been told that I had late Stage 3 or   Stage 4 (the worst type of endometrial cancer)  while I would have wanted treatment if it could help my symptoms, I would not have opted for radical surgery. I don’t want to spend the final chapters of my life being Medicalised, investing precious hours going to & from the GP or Hospital, or worse still ending up in hospital when in all reality they can’t do anything for me which couldnt be done in either in my own home or perhaps a hospice…

I don’t want to be cooped up on a ward with strangers in the beds around me or indeed strangers looking after me. Nor do I want to be sent for futile x-rays, battered & bruised as people try to get venflons into me – the list goes on.

I would want to spend the time which I had left, getting my house in order, saying the things that need to be said, spending time with people in my life who matter to me.

It wont come as shock an awful lot of other people would want the same things as me, either for their loved ones or themselves. So why then are more & more of us dying in hospital?

I suggest it is because we may not feel comfortable thinking about it & even if we do we might find it difficult to talk to the right people about it…

Oh dear, this may have been a pretty grim read & I am sorry if it has left you feeling somewhat down, it wasn’t my intention, but I did want to get it off my chest.

I promise in another # to lift this challenging life aspect to a positive place, by suggesting what can be done to make sure the final chapters belong to the person whose story it is…

 

Holly xx

 

 

*Discworld Death with Kitten by wichrzyciel

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