End of life
20 Nov, 09 | by BMJ Group
In the UK, death is a subject we steer clear of. Talking with a patient about the end of their life is uncomfortable, but necessary. A recent report from NCEPOD (the National Confidential Enquiry into Patient Outcome and Death) called “Caring to the End” has highlighted why this conversation needs to improve. We hear from David Mason, one of the clinical coordinators for the report, about their findings.
Also this week, when end of life care hits the headlines it is almost inevitably about assisted dying. We hear about times when doctors in Switzerland or the Netherlands help a patient to die, but what about when they refuse? Roeline Pasman and Dick Williems join us to discuss their study into the ways in which patients’ ideas of unbearable suffering may differ from their doctors’ ideas.
Birte Twisselmann takes us through this week’s news.
See also;
Concept of unbearable suffering in context of ungranted requests for euthanasia.
Deaths in Acute Hospitals: Caring to the End?
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
Hilary Speller
November 22nd, 2009 at 1:08 pm