Doctors’ view of care pathway for dying patients clashes with audit findingsBMJ 2009; 339 doi: https://doi.org/10.1136/bmj.b3799 (Published 16 September 2009) Cite this as: BMJ 2009;339:b3799
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I would like to comment on the experience of my father’s death which was managed using the Liverpool Care Pathway. He was in a dementia nursing home and could not communicate using words. After a series of strokes my father developed a chest infection. We took the difficult decision that he should be made comfortable, remain in the nursing home and not receive treatment to prolong his life. We were unaware of the practice of withdrawing fluids to a dying person, but it was explained that it was in his interests not to prolong the process of dying. My father survived for 11 days from the first ‘nil by mouth instruction’. His death certificate states that he died from a stroke and bronchial pneumonia, but we feel we witnessed a harrowing death from dehydration. We were at his bedside 24/7 for the final seven days.
The LCP was introduced to us several days after the initial decision was taken about his care We had not heard of it before; my interpretation of the document and our need to sign it was simply that it ensured all parties involved with my father’s care understood that he was dying.
Having previously never faced the dying process, we did not know what to expect and we felt very poorly supported. We feel there was a lack of continuity in monitoring him; perhaps that is inherent in a nursing home environment. During those eleven days he was seen by five different general practice doctors.
We explained to every person involved with his care that his left shoulder was clearly causing him a great deal of pain, especially when moved, although this was not investigated. It was in the last 24 hours of his life when my sister who is a physiotherapist arrived that we realised that my father had a dislocated shoulder.
What have we learnt? The LCP must be used by people with good experience and understanding of it as a tool in palliative care. More training is needed, especially for staff in care homes where the majority of residents do indeed end their lives. There must be access to expert palliative care on a 24/7 basis, beyond hospice and hospital settings. The dying person needs continuity of care; the LCP guidelines are meaningless if applied as a box ticking exercise. In addition, there are specific issues about end of life care for those with dementia which need to be considered. And relatives need more than kind words and cups of tea.
We are in no doubt that my father had a bad death. We hope that the painful process of recounting aspects his death mean that lessons are learnt.
Hilary and Rosemary Speller
22 November 2009
Competing interests: None declared
Having followed the Telegraph and Times articles recently, I found Zosia Kmeitowicz's report on the audit of nearly 4,000 deaths a refreshing change. Like Dr Peter Hargreaves (Telegraph letters 06 Sep 09) I too find that 50% of hospice patients return home, but regardless of whether they have ever had intravenous or subcutaneous rehydration. Like Dr Hargreaves I would be extremely concerned if the management of the side effects of drugs was managed by sedation, if the situation is reversible. The Liverpool Care Pathway does not remove the clinician's responsibility for practising good medicine, in fact if used correctly, the LCP demands very regular clinical review and decision making by the whole team. Tools are neither good nor bad in themselves but used well or badly by the craftsmen who use them. If Dr Hargreaves finds the problems he alludes to, I suggest he needs to look at how clinicians in his area are being educated in their assessment and care of the dying, since the results of the National Care of the Dying in Hospitals Audit do not confirm his claims of deaths from 'continuous deep sedation'. Correct use of this 'tool', the LCP, makes no difference to the timing of death but makes a significant difference to the quality of the life that comes before it and the experience of dying and death for patients, families and clinicians. Before we terrify the public yet again with news that the medical profession is not to be trusted with their care, let's not throw the baby out with the bathwater.
Competing interests: None declared