Technology and Natural Death: a Study of Older People, 2001-2002

<P>Abstract copyright UK Data Service and data collection copyright owner.</P><br>In its focus on older peoples’ understandings of technologies used in end of life care, this study has developed new methodologies for social science in a demanding and ethically sensitive field. Pictures, story boards and media extracts were used during interviews and focus groups and the research team was assisted by an advisory group which included participants. Over seventy older people from three age cohorts (65-74, 75-84, 85 years and over) and from three contrasting areas of Sheffield, took part. Key messages are for the need to ensure that <i>life prolonging</i> and <i>basic care</i> technologies are provided in ways that respect a variety of understandings about love, comfort, obligation and burden during dying.<br>
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The study highlights: the role that older people have in caring for the dying and their needs for support and training; information needs about issues of ethics, clinical practice and advance care planning; and the willingness of older research participants to discuss these matters and to enjoy the process of so doing. Developing a programme of public education and information was identified as an issue which should be addressed urgently if older people and their family carers are to be better equipped to make informed choices about these aspects of care. The study draws together issues previously considered under the largely separate remits of palliative care and gerontology. It is being used to provide advice on palliative and end of life care, especially to nursing and medical practitioners and to voluntary sector organisations as they begin to assess the need for action in this field.<br><br><B>Main Topics</B>:<BR><br>The study contains: qualitative interviews; focus group transcripts; associated fieldnotes; additional material, consent and information sheets; vignettes used in the interviews; slides used during focus groups.<br>
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The data cover: different ways of administering drugs and medical technology, such as syringe drivers, Fentanyl patches, tablets, sedation; medical treatment such as defibrillation, cardio-pulmonary resuscitation, artificial ventilation/feeding; and topics covering clinical death; quality of life, natural death. The vignettes used cover Alzheimer's disease and lung cancer.<br>
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<P>本摘要版权归英国数据服务中心（UK Data Service）及数据集采集版权所有者所有。</P><br>本研究聚焦老年群体对临终关怀所用技术的认知，在兼具实践挑战与伦理敏感性的领域中，为社会科学研究开发了全新的研究范式。研究过程中，访谈与焦点小组环节采用了图片、故事板及媒体片段素材，且研究团队获得了由研究参与者组成的咨询小组的协助。共有70余名来自英国谢菲尔德市三个差异化区域、分属三个年龄队列（65-74岁、75-84岁、85岁及以上）的老年人参与本研究。本研究的核心结论强调，需以尊重临终阶段个体对爱、慰藉、责任与负担的多元认知的方式，提供<i>延长生命技术</i>与<i>基础照护</i>服务。<br><br>本研究同时凸显了以下核心要点：老年群体在临终照护中承担的角色及其对支持与培训的需求；社会公众在伦理、临床实践与预先照护计划方面的信息诉求；以及参与研究的老年受访者乐于讨论此类议题并享受交流过程的积极态度。若要让老年群体及其家庭照护者能够更充分地就照护相关议题做出知情选择，亟需开展面向公众的教育与信息普及项目。本研究整合了此前分别归属于姑息治疗（palliative care）与老年医学（gerontology）两大独立领域的相关议题。目前本研究成果正被用于为姑息治疗与临终关怀领域提供政策建议，尤其面向护理与医疗从业者，以及正着手评估该领域行动需求的志愿组织。<br><br><b>核心研究主题</b>:<br><br>本数据集包含以下内容：质性访谈资料、焦点小组讨论转录文本、配套实地笔记、补充材料（含知情同意书与信息说明页）、访谈中使用的情景 vignettes（vignettes），以及焦点小组环节所用演示幻灯片。<br><br>本数据集涉及的内容包括：药物与医疗技术的不同给药/使用方式，如输注泵（syringe driver）、芬太尼透皮贴剂（Fentanyl patch）、口服药剂、镇静治疗；各类医疗干预措施，如除颤术（defibrillation）、心肺复苏（cardio-pulmonary resuscitation）、人工通气/人工营养支持；以及临床死亡、生命质量、自然死亡等相关议题。<br><br>本次研究使用的情景案例涵盖阿尔茨海默病与肺癌两种病症场景。