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…
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….
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…
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….
Hope he doesn’t suffer.
Hope he’s not aware of what’s
happening.
Hope his passing is easy.
Later……
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.
https://www.tamesidehospital.nhs.uk/documents/organdonationpolicy.pdf
