Wednesday, 11 September 2019

A difficult post......

This has been a very difficult piece to write, over the course of several weeks. It’s also a difficult read and I’ve vacillated on whether or not to post it.
But, on balance, the issues at the heart of it are very important and I feel strongly that people should be aware of them.

Tempus fugit
Time is relative
Time’s up….

Wednesday 26th August

When the phone rang early this morning, time seemed to simultaneously slow and speed up.

3 hours…. The clock is ticking.

12 days ago, my sister-in-law contacted me to let me know that my brother had been admitted to hospital following a fall at home. Early indications that he had fractured his skull and had an intracerebral haemorrhage were confirmed, and he underwent emergency surgery to relieve the resulting pressure in his brain.

Hope the operation is a success.
Hope he regains consciousness
Hope the damage won’t be too bad
Hope he’ll make a good recovery.

Following surgery, he is semi-conscious, and signs are cautiously optimistic.

Then they’re not. 

More surgery and an induced coma, to give the brain time to recover.
Time passes.  Scans, then more scans.  There is damage but the extent won’t be fully known until he wakes up.
During the attempt to bring him round from the induced coma, he has an epileptic seizure and must be fully sedated again.

Hope they can control the seizures
Hope the seizures haven’t caused more damage
Hope they can stabilise him.

Critical but stable.  It doesn’t feel as though those words belong in the same sentence.

Hours are spent, hovering by the phone, waiting for news, trying to comfort and gain comfort.  My sister-in-law is exhausted… the combined effects of overwhelming distress, worry, many hours spent travelling to and from the hospital and the high stress experience of intensive care …. ICU is not a relaxing environment… but she still finds time to update me daily, as we try to make sense of what’s happening.

The fight for life enlists the aid of a battery of cutting-edge technology.  Each problem which arises is carefully assessed, treated and monitored.

Days pass.  Hope fades.

He is no longer in a medically induced coma, but is deeply unconscious and on a ventilator.

For the first time I hear the word ‘catastrophic’.  The brain damage is widespread and irreversible.  He can breathe a little but requires support from the ventilator.  His heart is beating, his body is quietly going about its business, more or less as usual, but the prognosis is devastating.  He will not recover.

Brain stem death is confirmed.

Then, suddenly, things begin to move at a different pace.  He is on the Organ Donation Register. No longer concentrating on treating for recovery, but on organ optimisation. 
He is now on the ‘organ donation pathway’.  It takes time to process this new information.  They will maintain life support while blood and tissue samples are taken and the organ donation team swing into action.
I am no longer in contact with the ICU nursing staff but receive direct updates from the Regional Specialist Nurses in Organ Donation team, (or SNODs)  who are endlessly patient, answering my barrage of questions, and gently comforting, when emotion overwhelms me.

Good news….they have found matches for both kidneys, liver and lungs!

As soon as the specialist surgical teams are in place, they will remove his breathing tube and wait.

3 hours.

In the UK, that’s the protocol, during which time, in order for surgery to go ahead, he must die.  If he doesn’t, the whole surgical team, and the selected organ recipients, will stand down.

7.50 am. The ‘process’ to which the SNODs have been referring for the past two days finally begins and they’ve removed the breathing tube. 

Hope it’s quick.
Hope he doesn’t suffer any distress.
Hope it happens within that crucial 3-hour window.
Hope the phone rings soon.

In hospitals and homes elsewhere, there are four other people plus their families and friends, also waiting, also hoping, but for a different outcome.

Whilst the kidneys and liver will be viable for some time after removal, the lungs are time critical.  I’ve been told that they would be ‘blue-lighted’ to the recipient’s hospital.  Presumably a person in urgent need of lungs is already very poorly, and lungs are rarely available.

9.30am.  Still waiting, but hope is fading.

The one potentially positive thing to come out of this awful situation is beginning to look very remote.
Time slows, and still we wait.

Too late now.  The 3-hour deadline has passed but he hasn’t.  It’s impossible not to feel conflicted…. all the planning, time and effort by so many people.  The meticulous matching and cross-matching, clearing theatre time, assembling surgical teams, organising organ transportation… a logistical triumph, all for nothing.

No longer a potential donor and hope, across the board, is gone. 

He is now on the ‘end of life care pathway’.

Hope he doesn’t suffer.
Hope he’s not aware of what’s happening.
Hope his passing is easy.


Still waiting.

End of life care… not palliative care.  There is a significant difference.
The slide towards death is mercifully technology free.  The person emerges once more, freed from the maze of machines, probes, tubes and wires and the continual clamour of alarms.
He is moved out of ICU and into a private bay, elsewhere in the hospital.
Fluids and nutrition are withdrawn and replaced by the administration of a carefully  calculated cocktail of drugs, intended to reduce potential distress and relieve pain, until, eventually, gradually, a cascade of organ failure overwhelms the body and he slips away.

The sad fact is, that many families, perhaps even yours, will go through a similar experience.  At a time of profound shock, loss and impending grief, there are potentially the added challenges of preparations for organ donation with their attendant stresses, deadlines and protocols.

Obviously, being on the organ donation register is A Good Thing.  There are nowhere near enough donors and often, even those who are willing and suitable, like my brother, don’t succeed.  In fact, there is only a very small chance that your organs would ever be used, as the conditions necessary are relatively rare.

This is why organ recipients face disappointment time and time again, while waiting on the organ transplant list.

It is a widespread fallacy that people who die in road traffic accidents… such as motorcyclists, are the primary source of donated organs for transplantation.  If you die outside hospital, your organs will not be used for transplantation.  Even if you die in A&E your organs will not be used although body parts/tissues such as eyes, heart valves, bone, skin, veins and tendons can be harvested post mortem. 
To be an organ transplant donor, you must die in an ICU and have been ventilated and/or on life support.  ‘Ideally’ you will have had a head injury resulting in Brain Stem Death.  Donation following Brain Stem Death represents the main source of organs for transplant in the UK.

Even if you are not on the Organ Donation Register, if you meet the above criteria, your next of kin will be approached, carefully and sympathetically, and asked to consider organ donation.

Death and dying are not comfortable topics of discussion, especially with those closest to us, but if there is anything which this incredibly sad experience has taught me, it’s that waiting until it’s too late is A Bad Thing. 

My brother and sister-in-law did discuss organ donation and end of life choices so she was able to make sure his wishes were known, and be the very best advocate for him, during his final days.  It’s the bravest, the best, and the most incredibly difficult thing anyone can ever do for a loved one.

So if you, or a family member are on the organ donation register, and even if you’re not, I think it’s really, REALLY important to talk to each other and think about what you want and perhaps more importantly, what you don’t want, in your end of life care plan.

Accidents can happen to anyone.  Anywhere. Any time.
Don’t wait until the worst thing happens.  
Get information, ask questions, make informed choices.


 This is a good place to start

For detailed information on the organ donation process in England, this document is excellent.