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Rapid Responses: Rapid Responses published:
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Being sick enough to die: the need for evidence
- Clive E Bowman, Helga Goutcher (13 March 2007)
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Dying on the acute take
- Suzie Gillon, Kathryn Mannix and David A. Price (17 March 2007)
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U.K. Palliative Care
- Jonathan F Ward (8 June 2008)
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Clive E Bowman, Medical director BUPA Care Services, Bridge House, Outwood Lane, Horsforth, Leeds LS18 4UP, Helga Goutcher
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Dear Editor, Sydney Dy and Joanne Lynn are to be congratulated for helpful analysis piece and the perceptive title, "Getting services right for those sick enough to die". Their analysis has echoes of a 1982 BMJ editorial by Bayliss entitled, “Thou shalt not strive officiously” (1) which, focussed on resuscitation but captures much of the present challenges. Perhaps the biggest challenge in using trajectories is diagnosing the transition between living with a chronic condition and the onset of dying from that condition. In various forms of cancer the transition has become much more openly acknowledged and the introduction and value of good palliative care beyond doubt. However, the trajectory of neurodegenerative diseases such as dementia in the aged are not well described, accordingly transitions are missed or perhaps not capable of robust diagnosis in routine practice. The health needs of the very old are a relatively new phenomenon and whilst there may be some advance in debate and understanding over the value of interventions such as the resuscitation of older people in care homes (2) there is much ignorance, misunderstanding and occasional unrealistic expectation regarding the appropriate level of support, intervention and its impact on the very old with conditions such as dementia. Feeding, nutrition, feeding and dementia offer an example of the complex interplay of factors. In early disease with increased activity people with dementia may need an increased diet to maintain wellbeing whereas in more advanced disease, less activity, increasing frailty and weight loss may be expected. In his elegant prose, Alan Bennett provided personal observations from visiting his mother in a care home. “The turnover of residents is quite rapid since whoever is quartered in this room is generally in the later stages of dementia. But that is not what they die of. None of these lost women can feed herself and to feed them properly, to spoon in sufficient mince and mashed carrot topped off with rhubarb and custard to keep them going, demands the personal attention of a helper, in effect one helper per person. Lacking such one- to-one care, these helpless creatures slowly and quite respectably starve to death.” (3) It is not clear is whether Bennett had considered that the “respectable death” may have been deferred by more aggressive feeding and whether that would have been appropriate or a chosen course for the individual. The BMJ previously published a well considered analysis by John Hoffer on “Tube Feeding in advanced dementia” 4) In the responses to that article Dr Ansell, a Senior lecturer at the Department of Health Sciences, University of York wrote 5), “Significant weight loss marked the beginning of the end of their lives for each of my long-lived parents and parents-in-law (three of whom had dementia), but once we were able to accept this and stopped trying to 'feed them up' food ceased to be such a worry. They each developed idiosyncratic tastes and my late father happily ate a doughnut a day but almost nothing else for several years. My mother, now in her 90th year, eats only toast, spicy rice dishes and jelly babies. To her relief we have finally stopped trying to persuade her to vary her diet and my brother and I now cook and freeze small quantities of what she likes to eat. With this bespoke meals service my very frail mother continues to live alone in her own home and appears to be meeting her nutritional needs.” The apparent disparity of perspective between the accounts of Bennett and Ansell illustrates the present difficulty of doctors and other health professionals providing good clinical opinion. This dilemma needs a similar intelligent consideration as the debate regarding resuscitation. This is problematic because opinion over eating, food and nutrition is subject to so much diverse opinion that what evidence and informed choice may exist often seems overrun by fashion and prejudice. At the very least cachexia related to non-malignant disease needs wider understanding and more generally research is urgently needed to provide evidence base to support clinical decision making whether patients are sick enough to die. It is not sufficient to ensure that the services are right for those sick enough to die. Yours sincerely, Clive Bowman Helga Goutcher References 1) Bayliss RI Though shalt not strive officiously BMJ 1982 Vol 285 No 6352 P 1373-1375 2) Simon P Conroy, Tony Luxton, Robert Dingwall, Rowan H Harwood, John R F Gladman, Cardiopulmonary resuscitation in continuing care settings: time for a rethink? BMJ 2006;332:479-482 (25 February), doi:10.1136/bmj.332.7539.479 3) Alan Bennett The candlewick way of death Untold Stories 2005 Faber and Faber ISBN-10: 0571228313 4) L John Hoffer Tube feeding in advanced dementia: the metabolic perspective BMJ 2006; 333: 1214-1215 5) Pat Ansell Thank you (rapid response to Hoffman) http://www.bmj.com/cgi/eletters/333/7580/1214#151016 Competing interests: Medical Director Care Home provider |
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Suzie Gillon, SHO, General Medicine Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP, Kathryn Mannix and David A. Price
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We read with interest the article by Dy and Lynn on healthcare provision at the end of life1; in particular the concept of trajectories of chronic illness impacting on care. Although it may be preferable to predict outcomes and allow for death in the community, a number of patients with chronic illnesses in which death may be expected or patients with severe and significant comorbidites will be admitted to acute medicine. We recently performed a retrospective audit of patients admitted through the medical admissions unit, who subsequently died. Death did not come as a surprise in 21/23 patients; 33% had terminal cancer, 43% had severe infection with severe comorbidities. There was a delay of 11 hrs on average from recognition that the patient was dying to institution of any palliative measures. Of these terminally ill patients, 6 were judged to have had adequate palliation, 10 received no palliative medication, and 5 received minimal palliation. The commonest reason for withholding palliative drugs seemed to be a trial of active treatment in the first instance. Care of the dying in acute medicine is possibly not always seen as a priority but we believe that these patients should be recognised early so that drugs for symptomatic relief can be instituted, to ensure a comfortable death and to enable the patient and family to prepare for death2. These measures can be instituted alongside active management (where appropriate) in this group of patients who are ‘sick enough to die’. References 1 Dy S, Lynn J. Getting services right for those sick enough to die. BMJ 2007;334:511-513. (10 March.) 2 Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ 2003;326:30-34 Competing interests: None declared |
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Jonathan F Ward, Retired NA
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24th April 2008 If your readers think that 21st century life could not possibly get any worse, then just wait until they become terminally ill. In the mid-nineteenth century Schopenhauer, the great German philosopher and pessimist was of the opinion that: ‘Whatever you will be after your death-even though it were nothing-will then be just as natural and suitable to you as your individual organic existence is now; thus the most you have to fear is the moment of transition’ Some 150 years later, due to both irresponsible litigation and the catastrophic legacy of Harold Shipman, a contemporary Schopenhauer would perhaps now amend the above to read: ‘thus the most you have to fear are the MONTHS of transition’. Picture this case history. A 96 year old lady of previous excellent health but now terminally ill with ovarian cancer, was admitted to hospital with intestinal obstruction and great distress. Not seen by the admitting Consultant and not considered for hospice care, she was discharged 5 days later. Unable to eat or drink, vomiting and choking on copious faeculant material, she died 11 days later, the medical authorities too terrified to have afforded adequate symptomatic relief with realistic opiate medication. That wonderful old lady was my mother. Unless there are drastic improvements to what is apologetically called ‘palliative care’ in the U.K., then we, or some of our friends and relatives, are inevitably going to experience similar desperate endings to our lives: and yet there appears to be little appetite for change. Letters to the ineffectual General Medical Council remain unacknowledged and parliamentary time is consistently denied to the few champions of palliative care reform, spearheaded by the admirable Professor and Baroness Finlay of Llandaff, a medical and international expert in this field. What we have to ask is this: ‘Is questionable embryo research on those yet to be conceived really more pressing than merciful consideration for those about to depart?’ Yours sincerely, J. F. C. Ward, M.B., B.S. (London) 1971 Competing interests: None declared |
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