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Rapid Responses: Rapid Responses published:
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Strategy is not for the entire UK
- Cameron J Y Fergus (27 July 2008)
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Where To Die
- Jeremy A Stone (27 July 2008)
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Changing the death taboo.
- Jane Gibbins, Colette M. Reid, Joanna E. Chambers, Carolyn Campbell, Rachel McCoubrie, Karen Forbes (29 July 2008)
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is assisted suicide the new taboo?
- Peter Bruggen (30 July 2008)
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Restricted choice
- Alfred P J Lake (31 July 2008)
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We need research to inform the end of life strategy
- Deirdra A Sives, Jo Hockley Research Fellow/CNS (Pall care) & Scott A Murray ,St Columba's Professor of Primary Palliative Care ,Primary Palliative Care Reseach Group, Division of Community Health Sciences.Edinburgh University EH8 9DX (31 July 2008)
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Cameron J Y Fergus, Consultant in Palliative Medicine Borders General Hospital, Melrose
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I agree with many of the issues raised by Dr Riley in her editorial. However, there is a factual error in the title and text of the editorial. Dr Riley starts by discussing death rates in England then discusses the strategy which she describes as "dealing with end of life care in the United Kingdom". The introductory page of the website referenced in the editorial (1) states "The Strategy, which covers England, is the first for the UK." At present there is much work looking at end of life care being undertaken in Scotland. This includes the Scottish Partnership for Palliative Care's "Palliative and end of life care in Scotland:the case for a cohesive approach" (2). Although many of the principles are similar, it is important to be aware that the Richards' strategy applies to England, not the entire UK. (1) http://www.dh.gov.uk/en/Healthcare/IntegratedCare/Endoflifecare/index.htm (2)http://www.palliativecarescotland.org.uk/publications/Palliative%20and%20End%20of%20Life%20Care%20in%20Scotland.pdf Competing interests: None declared |
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Jeremy A Stone, SpR Anaesthetics Leicester LE1 5WW, Leicester Royal Infirmary
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The article by Riley highlights many of the current problems faced by the population today concerning death and dying. I absolutley agree it is a taboo subject, but should it be? As someone who lost their grandfather to cancer in the last ten weeks I feel qualified to comment further. At medical school we now teach communication skills but rarely (if ever) is the subject of death brought up. In the final days of my grandfather's life it was simply easier, for us, that he was cared for in hospital. There was no way we could have realistically helped as a family. Most employers only allow the next of kin much time off from work in these situations and in our case the next of kin was 200 miles away. I should have seen it coming, 18 months after radiotherapy for a lung carcinoma and plans could have been in place to allow him to spend his final days, when they arrived, at home. The subject was never (to my knowledge) broached with him. Perhaps that conversation could have prevented or shortened his hospital admission and allowed him to die at home. There were some advantages for us (apart from convenience) to his being in hospital. It seemed to allow or be a trigger for more distant family to visit and also provided a sense of detachment. I do not work in general practice so do not know how easy (or not) it is for people to be cared for at home whilst they are dying. I suspect that a lot more resources would be required, not least in education, to provide the care that most terminally ill patients require to die at home. I would certainly welcome this. Competing interests: None declared |
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Jane Gibbins, Palliative Medicine SpR & Clinical Research Fellow Department of Palliative Medicine, The University of Bristol, Horfield Road, Bristol, BS2 8ED, Colette M. Reid, Joanna E. Chambers, Carolyn Campbell, Rachel McCoubrie, Karen Forbes
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In her editorial ‘Changing the strategy for end of life care in the UK’ Dr Riley highlights that ‘almost all healthcare professionals will at some point care for dying patients, and they should have the skills to do it well’. (1) However, the average number of hours devoted to the larger subject of palliative care (encompassing ‘end of life’ care) in UK medical undergraduate curricula is short – an average of twenty hours over a four to six year course.(2) This is despite clear recommendations from the General Medical Council that all medical students should receive core teaching on relieving pain and distress and the care of the terminally ill.(3) As part of a national mixed methods study, we explored what coordinators of undergraduate palliative care teaching are trying to achieve within this curriculum time. Perhaps not surprisingly, they are aiming to help medical students overcome the same fears held by the lay public about death, dying and hospices and to convey that the palliative care approach is applicable to many patients and is part of any doctors’ role, whatever speciality they pursue in the future. Medical students’ fears, documented in the literature, perhaps exist because the focus of care of acute teaching hospitals remains that of cure and life prolongation, and invasive procedures, investigations and treatment (4) are often continued at the expense of comfort for the deteriorating patient.(5) Healthcare professionals can be reluctant to diagnose dying and death is often seen as failure.(6) However, most healthcare professionals have had little formal training in diagnosing dying (7) or palliative and end of life care. Qualitative interviews have revealed that some specialist clinicians, despite being sensitive and caring, express reluctance to face the palliative care needs of their patients and find it difficult to discuss prognostication and end of life issues with patients.(8) Medical school teachers have already been trying to change newly qualified doctors’ views around death and dying, an explicit aim of the End of Life Care Strategy, (9) but these doctors will find it impossible to put this training into practice if it is in conflict with the culture of medical institutions in which they practice and the views of their trainers and seniors. The medical profession as a whole needs to learn to accept that death and dying do not always represent failure. It remains to be seen whether a strategy document can change culture and in doing so, improve the care of the dying. References 1. Riley J. A strategy for end of life care in the UK. British Medical Journal 2008; 337: 934-4 2. General Medical Council. Tomorrow's Doctors: recommendations on undergraduate medical education. London: General Medical Council, 1993 3. Field D, Wee B. Preparation for palliative care: teaching about death, dying and bereavement in UK medical schools. Medical Education 2002; 31: 561-67 4. SUPPORT Principle Investigators. A controlled trial to improve care for seriously ill hospitalised patients: the study to understand prognoses and preferences for outcomes and risks of treatment. JAMA 1995; 274:1591-1598 5. Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. British Medical Journal 2003; 326:30-34 6. Miller F, Fins J. A proposal to restructure hospital care for dying patients. New England Journal of Medicine 1996; 334:1740-1742 7. Christakis N, Iwashyna T. Attitude and self-reported practice regarding prognostication in national sample of internists. Archives Internal Medicine 1998; 158:2389-2395 8. Fitzsimons D, Mullan D, Wilson J, Conway B et al. The challenge of patients' unmet palliative care needs in the final stages of chronic disease. Palliative Medicine 2007; 21:313-322 9. Department of Health.The end of life care strategy. London: Department of Health, 2008. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277 accessed July 28 2008 Competing interests: None declared |
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Peter Bruggen, retired retired
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The sub-heading of this Editorial refers to a need to tackle taboos about death, yet there is no reference to two recent BMJ pieces each with editorial emphasis. Three years ago, in your ‘Editor’s Choice’, Tony Delamothe (1) reminded us that 80 % of the UK population appeared to be in favour of legislation to permit assisted dying. One year ago, in a BMJ Editorial entitled ‘Physician assisted death in vulnerable populations’, Timothy E Quill (2) reported that ‘claims of increased risk in these groups are not supported by evidence’. Suicide is a legal and commonly used way of death and doing it with assistance is legal in some countries. I hope that these ways of dying are not becoming a taboo in your pages. . I hope we can go on discussing it. Peter Bruggen 1. Delamothe T. A time to die. BMJ 2005;331 (24 September.) 2. Quill TE. Physician assisted death in vulnerable populations. BMJ 2007;335:625-626 (29 September.) Competing interests: None declared |
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Alfred P J Lake, Consultant in Anaesthesia and Pain Medicine Glan Clwyd Hospital, LL18 5UJ.
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Many patients and their nearest and dearest will be comforted and offered some hope by much of the recently launched End of Life Care Strategy and the knowledge that an unwanted, undignified and medicalised death in hospital will no longer have to be endured. It is no surprise that so many complaints relate to end of life care and it is right that we need to consider how this might change, recognising both that the complexities of planning are enormous and that as a nation we face multiple challenges if we are to meet the needs and preferences of people as they approach death. The strategy reminds us that although every individual may have a different idea about what would, for them, constitute a ‘good death’, for many this would involve being treated as an individual with dignity and respect, being without pain and other symptoms, being in familiar surroundings and being in the company of close family and/or friends. Difficult indeed to predict and prognosticate but right to factor in the preferred place of care and the preferred place of death. The patient’s wishes, of course, must be known and complied with but why not the preferred mode of death as well? Paying but lip service to the concept of choice, this one is conspicuous by its absence. Voluntary euthanasia has long had major support among the public who are concerned about medicalisation of the dying process and simply extending this into the home is not the answer. Good palliative care and the assisted dying option should both be available, they are not mutually exclusive; it needn’t be either/or for optimum end of life care. Patients should be able to exercise informed choice above all in respect of this, their most important decision, it is the humane thing to do. The certainty of outcome at the particular time is a distinct benefit; death with dignity after appropriate palliative care (1). 1. Lake A. Listening, or just hearing what they say? Journal of the Royal Society of Medicine 2007; 100: 157-8. Competing interests: None declared |
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Deirdra A Sives, Medical Research Fellow Strathcarron Hospice, Denny,Stirlingshire FK6 5HJ, Jo Hockley Research Fellow/CNS (Pall care) & Scott A Murray ,St Columba's Professor of Primary Palliative Care ,Primary Palliative Care Reseach Group, Division of Community Health Sciences.Edinburgh University EH8 9DX
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Riley highlights that the public and health professionals must overcome taboos about death and dying and be able to communicate better for the end of life strategy to work.(1) Despite our present culture of patient autonomy and choice, planning for death remains largely an unmentionable subject for many health professionals, patients, and families. A recent audit of the recording of patients’ preferred place of death by palliative care nurse specialists working in the community revealed that only 28% of patients had this documented.(2) One might expect that patients referred to a hospice might suspect that they were at risk of dying. However, the subject was only ‘broached’ in a minority of cases and in only 14% was there evidence that patients died in their preferred place of care. The End of Life Care Strategy suggests that ‘advance care planning’ discussions need to be handled with skill and sensitivity to promote open and honest discussion about planning quality end of life care with our patients. Questions remain, however, as to how acceptable are such discussions to professionals, patients and their relatives, how best to facilitate them, and do they result in better care for patients? Our research group in Edinburgh is currently undertaking feasibility studies of advance care planning in three different care settings in order to guide the appropriate implementation of this policy drive. Firstly, we are evaluating prospectively the introduction of this approach as routine for all patients referred to a hospice community team. Secondly we are introducing such care planning to nursing care home residents in Midlothian, and, thirdly, we are testing the feasibility of GP and community nurses undertaking anticipatory care planning for cancer patients in relation to their palliative care registers. We hope soon to be able to offer guidance on how the strategy can move forward and how best staff can be trained and supported. 1 Riley J. A strategy for end of life care in the UK.BMJ 2008; 337:a943 2 Sives DA, Cornbleet MA, Murray SA. Preferred place of care - are we asking the question? Pall Med 2008; 22(4):578. Abstract. Competing interests: None declared |
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