patients may be less risk averse than committees
http://www.100md.com
《英国医生杂志》
1 London SW3 4BD s_nurock@hotmail.com
Ethical considerations should apply to all medical practice and interventions that affect patients. This should include social caregiving, which at present is not seen as being in need of moral or ethical consideration. And if audit is potentially more likely to lead to change than research, as Wade claims,1 clearly it should be given equal consideration and outcomes followed up.
Sometimes, however, it feels as though ethics committees are putting up barriers to much needed research. As a former carer for my husband, a general practitioner who developed Alzheimer's disease in his 50s, I know that some people with dementia and their carers perceive acceptable risk differently from ethics committees and are more willing to take risks, feeling there is little to lose. Indeed, research has shown that carers and people with dementia are particularly altruistic in their desire to be included in research.2
Affected patients should be given a voice on what constitutes "adverse effects" in ethical decisions on research and treatment interventions. Being included in a clinical research project has considerable placebo effect on the wellbeing of both patient (and carer), and qualitative research elicits a wealth of data from participants. In return, researchers have a responsibility to ensure that the expectations of patients are realistic and that data are managed responsibly to avoid patients being continually frustrated by media hype over supposed cures.
Issues around consent are paramount and particularly difficult in conditions such as dementia. The Mental Capacity Bill should provide clearer guidelines on research on people with dementia, and past wishes and advance directives will need to be included. In practice I would argue that there is less of an imbalance in power in dementia as doctors are effectively powerless because they can do little to treat it. Carers of such patients are often well informed "experts" and are acknowledged by some as being better able to judge moral issues relating to their relative than professionals.
Despite the attention given to ethical research, sadly, no evidence exists of anyone having moral or ethical concerns about low standards of care for tens of thousands of patients in care homes. Lack of activities and stimulation in care settings, staff shortages, high staff turnover, and lack of funding contribute to poor quality of life for all parties. The impact on patients and their carers should always be considered when deciding on the level of ethical scrutiny of research, audit, medical practice, and social care.
Although SN works in a voluntary capacity for the Alzheimer's Society and serve as a member of the MRC Advisory Group on Public Involvement, I have written this article giving a personal perspective following my experiences of 16 years as a carer. It is not necessarily representative of the Alzheimer's Society, although they read and approved the draft of my original version.
Competing interests: None declared.
References
Wade D. Ethics, audit, and research: all shades of grey. BMJ 2005;330: 468-71.
Baldwin C, Hughes J, Hope T, Jacoby, R, Ziebland S. Ethics and dementia: the experience of family carers. Prog Neurol Psychiatry 2004;8(5). http://www.escriber.com/Progress/Features.asp?ID=170&Action=View (accessed 7 Feb 2004).(Shirley Nurock, London region coordinato)
信息仅供参考，不构成任何之建议、推荐或指引。文章版权属于原著作权人，若您认为此文不宜被收录供大家免费阅读，请邮件或电话通知我们，我们收到通知后，会立即将您的作品从本网站删除。Ethical considerations should apply to all medical practice and interventions that affect patients. This should include social caregiving, which at present is not seen as being in need of moral or ethical consideration. And if audit is potentially more likely to lead to change than research, as Wade claims,1 clearly it should be given equal consideration and outcomes followed up.
Sometimes, however, it feels as though ethics committees are putting up barriers to much needed research. As a former carer for my husband, a general practitioner who developed Alzheimer's disease in his 50s, I know that some people with dementia and their carers perceive acceptable risk differently from ethics committees and are more willing to take risks, feeling there is little to lose. Indeed, research has shown that carers and people with dementia are particularly altruistic in their desire to be included in research.2
Affected patients should be given a voice on what constitutes "adverse effects" in ethical decisions on research and treatment interventions. Being included in a clinical research project has considerable placebo effect on the wellbeing of both patient (and carer), and qualitative research elicits a wealth of data from participants. In return, researchers have a responsibility to ensure that the expectations of patients are realistic and that data are managed responsibly to avoid patients being continually frustrated by media hype over supposed cures.
Issues around consent are paramount and particularly difficult in conditions such as dementia. The Mental Capacity Bill should provide clearer guidelines on research on people with dementia, and past wishes and advance directives will need to be included. In practice I would argue that there is less of an imbalance in power in dementia as doctors are effectively powerless because they can do little to treat it. Carers of such patients are often well informed "experts" and are acknowledged by some as being better able to judge moral issues relating to their relative than professionals.
Despite the attention given to ethical research, sadly, no evidence exists of anyone having moral or ethical concerns about low standards of care for tens of thousands of patients in care homes. Lack of activities and stimulation in care settings, staff shortages, high staff turnover, and lack of funding contribute to poor quality of life for all parties. The impact on patients and their carers should always be considered when deciding on the level of ethical scrutiny of research, audit, medical practice, and social care.
Although SN works in a voluntary capacity for the Alzheimer's Society and serve as a member of the MRC Advisory Group on Public Involvement, I have written this article giving a personal perspective following my experiences of 16 years as a carer. It is not necessarily representative of the Alzheimer's Society, although they read and approved the draft of my original version.
Competing interests: None declared.
References
Wade D. Ethics, audit, and research: all shades of grey. BMJ 2005;330: 468-71.
Baldwin C, Hughes J, Hope T, Jacoby, R, Ziebland S. Ethics and dementia: the experience of family carers. Prog Neurol Psychiatry 2004;8(5). http://www.escriber.com/Progress/Features.asp?ID=170&Action=View (accessed 7 Feb 2004).(Shirley Nurock, London region coordinato)
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