The care pathway has originally been developed by palliative care professionals and geriatricians in Liverpool, but it is now widely applied in NHS hospitals. The interesting conflict however is not so much one about when to apply it but one about who makes the decision to do so.
Newsnight showed a brief interview with a relative of a patient who was put on the care pathway. In essence, the relative argued this was a decision to let the patient die without exploring alternative routes to address the illness of patient. She reportedly 'begged the consultant' to save the life of the patient instead of applying the Liverpool Care Pathway. In such situations, the Liverpool Care Pathway may resemble more a professional device to conceal clinical decisions from relatives and patients, rather than an instrument for delivering exemplary palliative care.
The discussion amongst Paxman's guests however moved quickly away from the critical point that was made by the relative of the patient (and another guest in the studio) towards the 'soft' issue of how to involve patients or relatives in the discussion about the care pathway. This however dodged the actual problem of clinical decision making.
As one of the guests emphasised, the question is about WHO makes the decision. Relatives often do not just want to be consulted in the difficult cases but want to make the decision itself. So, in difficult cases, consultation is not enough. The Minister for Care Services Norman Lamb waffled for a while and managed to skirt around the real issue, but anybody who listened carefully couldn't have been in any doubt. As medical knowledge is more widely disseminated in the population, patients and relatives will increasingly challenge clinicians in their decision making and 'consulting' is taken to be synonymous with 'deciding'. No one in the studio pointed out that consultation in the clinical context does NOT mean a fundamental shift of the decision making authority from clinical staff to relatives or patients.
The relative brought this to the point when he said that it should be the family or the patient who decides which services he or she receives. We may agree or disagree with this, but the main message is clear. The times when NHS clinicians could make decisions on their own is over. Nowhere is this more clear then in deciding who lives or dies.
My husband, aged 60, terminal cancer, was killed in a hospice in August, by an acute fatal overdose of oxycodone followed by an overdose of midazolam. A GP new to the job referred the matter to the coroner and we await an inquest. He was not co-operating with the hospices desire to increase medication, he phoned me on his mobile just 2 hours before i found him unconscious.You are right. The issue is Who Decides.
ReplyDeleteHi,
ReplyDeleteThis seems to be a very sad and tragic case and I hope the coroner's verdict will allow you to understand what was going on and give you some closure as well.
It appears that the cases where clinical decisions are questionable to say the least are many and we as patients and relatives need to apply pressure to clinicians to explain themselves as much as possible and reasonable.
Axel
Thanks for the message. I hardly dare hope to get 'the truth, the whole truth etc,'. One of the most surprising things is the 'hospice' is registered as a care home without nursing with the QCC yet is allowed to call itself a hospice.In its annual report and in the QCC report it is described as giving day and respite care but it does end of life care big time. We didn't know this,he went for respite.
ReplyDeleteIt is run as a charitable trust,the Local PCT doesnt fund it. The only medical input was 2GP's doing a jobshare.There was no double check proceedure for giving Class A drugs. I could go on..
A lot has been said about the LCP recently,our PCT has provided very sound guidelines, they just werent followed.I wonder how many people realise care homes are doing the LCP.
This sounds wrong on so many levels! I hope the inquest can shed some light at what went wrong and also, who was responsible for allowing them to make decisions about end of life when the hospice was only licensed as a day and respite care institution!
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