The suggestion is that relatives must be involved in decisions regarding ‘end of life’ care for terminally ill patients. I have a strong personal view about this having nursed my beloved husband through to what I would describe as a ‘good death’. Peaceful, without pain and in my arms. You could say that we were fortunate, as a pharmacist and stroppy mare, I was intimately involved with every decision about pain relief and care and no, the Liverpool Care Pathway was not included.
The regime is designed to relieve suffering and of course includes pain relief but controversially may involve the withdrawal of food and water. This sounds horrific but must be viewed in the context of a terminally ill individual who may be incapable of taking on board sustenance.
As the news of this proposed change in the NHS constitution was announced I listened to an interesting radio debate on the subject. Two callers, both recently bereaved, spoke with passion and knowledge about their recent experiences of supporting a much loved relative through their final hours, one with a highly positive view of the LCP, and one vehemently against. They both spoke angrily about ‘dying with dignity’ – a phrase that makes my hackles rise at every mention. How can anyone describe what dignity means? Surely a ‘good death’ – i.e. – at peace, in comfort and hopefully without pain – is what we should want.
I remember a recent news item about an old lady suffering from pneumonia. The nursing home advised her niece that there was little chance of recovery and they would adopt the LCP to ‘ease her passing’. The niece was having none of it and knowing what a feisty lady her aunt is, insisted that antibiotics should continue and there should be no talk of dying. Two years later, the sprightly old dear was enjoying a game of scrabble as she celebrated her 90th birthday.
Discussing care of a relative who is unable to speak for themselves doesn’t always work in the patient’s favour. There is a real risk (and no doubt plenty of examples can be found) where an elderly or infirm individual may be seen as a burden and a terminal care pathway seen as a blessed relief, not for the patient, but for their beneficiaries. Harsh but true.
So to get off the fence, what is my view of the LCP and a change in the constitution? Care pathways for terminally ill patients are normally designed specifically for that patient, discussed with the patient, or if that’s not possible, with their relatives. The LCP is one solution in a complex tool box full of options for a clinician to do their best for the patient. To focus this debate on only one method of terminal care is unhelpful and confusing.
As the former secretary of state for health famously kept saying – ‘nothing about me without me’ – in a perfect world, these life changing, and possibly life ending, decisions must be made with an informed balance. Doctors, nurses and therapists can only do what they believe to be best for an individual state of circumstances. The views of a patient and/or relative must be sought and the discussion must be recorded on the patient’s notes along with the way forward which has been agreed.
This will protect not only patients, but their clinicians too.