Death. We spend our lives walking towards it. Yet, we are not very good at discussing it and not very good at dealing with it. The boundaries between life and death are at best mysterious and usually vague.
Many clinicians are ill prepared for death. Young nurses, in particular, who may never have experienced the death of a loved one, can be confronted with death on an industrial scale. How does it impact them?
Do they become annealed to death or do their experiences contribute life's understanding of the real meaning of compassion?
Young doctors; trained to use every last ounce of their energy and knowledge to sustain their patients; how do they react when a life slips through their fingers. Where, in their young lives, do they find a lexicon to speak of death, to talk to bewildered relatives or patients who know their life chances are drifting away?
Breaking bad news is a skill. It takes time, quiet and pace.
'Your husband is very ill and may not recover...'
Or
'Mrs Brown, you know your husband is very ill...'
Is it bad doctor?
'I'm sorry, it is....'
How bad?
'He is very sick...'
He will get better, won't he?
'I'm sorry to tell you, I don't think he will...'
Is there nothing you can do?
'We can make him comfortable and make sure he has you and the family with him...'
How long has he got?
'I wish I could tell you but I don't know. It is impossible for me to say but I promise you; we can ensure he is in no pain, he will be comfortable and we will look after you and him. Is there anything we can do for you?'
Tricky, isn't it?
Death is what happens when we move our loved ones into our memory. No one dies until we forget them.
It is our job to make sure memories aren't sullied by our clumsiness, ineptitude or a work-a-day routine.
To help us and multi-disciplinary teams, in the late 90's Liverpool's Marie Curie Hospice and the RLUH developed the Liverpool Care Pathway for the dying patient; covering palliative care options for patients in the final days or hours of life.
The pathway dealt with recognising when somebody is approaching their end. It spoke to clear communication with everyone, issues of hydration and fluid intake. It talked about patients being supported to eat and drink as long as possible and consideration of giving fluids by drip. It emphasised good mouth care.
The LCP dealt with medication prescribing, ongoing care and care after death. It considered care of relatives, their comfort, access and uninterrupted time. Individualising care.
There was nothing wrong with the LCP but it fell into disrepute and ended following a newspaper campaign that detailed harrowing experiences of relatives and patients where neither the letter, nor the spirit nor intent of the LCP was followed.
Each year about 300,000 people die in the care of the NHS. An NHS that is noisy, rushed, under-staffed, blighted by routine, procedure, process and pressures to get people through the system.
Death needs time, peace, concentration and fastidious individual care. The NHS struggles with bespoke.
My uncle died. After careful consultation with my small family, the team that cared for him and I, watched him slip away with all the tender care signposted by the LCP.
By the time the Duchess died the LCP was outlawed. The hospital and the hospice used an end of life care pathway that was, in all but name, the LCP. She died in my arms.
We can only touch the dying and the bereaved though the training we have received, the poise we have learned, the time we can give and the experience we have gathered.
We can't chose when we die but often we can choose the place. The NHS should strain, to the sinew, the effort needed to make it happen.
If we need guidance to help people die we have lost our humanity and misunderstand our purpose for 300,000 people.
We simply have to ask ourselves, how would we like to meet our end and arrange it for everyone who goes before us, in the expectation, when the time comes, someone will do it for us.
