痴呆患者预立医疗照护计划的研究进展
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摘要
阐述了痴呆的流行病学特点,综述了国内外痴呆患者预立医疗照护计划的应用研究现状,从预立医疗照护计划的话题敏感性、认知、支持、时机几个方面总结了在国内开展痴呆患者的预立医疗照护计划的影响因素,并基于中国文化背景提出了痴呆患者实施预立医疗照护计划的策略,即加强知识教育、建立"以家庭为导向,患者为中心"的预立医疗照护计划干预模式、探索讨论的正确时机,以期为国内痴呆患者开展预立医疗照护计划提供理论依据和实践指导。
This article describes the epidemiological characteristics of dementia and reviews the research progress of advance care planning(ACP) for dementia patients at domestic and abroad. In addition, the study summarizes the influencing factors of implementing ACP, including topic sensitivity, knowledge, support, and opportunity. Based on the background of Chinese culture, the strategies of implementing ACP for dementia patients are proposed, such as strengthening the education, establishing the ACP mode of "patient-centered, family-oriented", medical care plan and exploring the right time for ACP, in order to provide the theoretical and practical guidance for the implementation of ACP for dementia patients in China.
This article describes the epidemiological characteristics of dementia and reviews the research progress of advance care planning(ACP) for dementia patients at domestic and abroad. In addition, the study summarizes the influencing factors of implementing ACP, including topic sensitivity, knowledge, support, and opportunity. Based on the background of Chinese culture, the strategies of implementing ACP for dementia patients are proposed, such as strengthening the education, establishing the ACP mode of "patient-centered, family-oriented", medical care plan and exploring the right time for ACP, in order to provide the theoretical and practical guidance for the implementation of ACP for dementia patients in China.
引文
[1] VAN DER STEEN J T,RADBRUCH L,HERTOGH C M,et al.White paper defining optimal palliative care in older people with dementia:A Delphi study and recommendations from the European Association for Palliative Care[J].Palliat Med,2014,28(3):197-209.
[2] SUDORE R L,FRIED T R.Redefining the "planning" in advance care planning:Preparing for end-of-life decision making[J].Ann Intern Med,2010,153(4):256-261.
[3] 李峥.老年痴呆相关概念辨析[J].中华护理杂志,2011,46(10):1045.
[4] 贾建平.中国痴呆与认知障碍诊治指南[M].北京:人民卫生出版社,2010:195.
[5] World Health Organization.Dementia[EB/OL].(2016-04)[2017-02-22].http://www.who.int/mediacentre/factsheets/fs362/en/.
[6] 李昂,殷淑琴,徐勇,等.2010～2030年中国老年期痴呆的预测[J].中国老年学杂志,2015,35(13):3708-3711.
[7] ASHTON S E,ROE B,JACK B,et al.End of life care:The experiences of advance care planning amongst family caregivers of people with advanced dementia:A qualitative study[J].Dementia,2016,15(5):958-975.
[8] SUDORE R L,LUM H D,YOU J J,et al.Defining Advance Care Planning for Adults:A Consensus Definition from a Multidisciplinary Delphi Panel[J].J Pain Symptom Manage,2017,53(5):821.
[9] GOEDE M,WHEELER M.Advance directives,living wills,and futility in perioperative care[J].Surg Clin North Am,2015,95(2):443-451.
[10] HUGO J,GANGULI M.Dementia and cognitive impairment:Epidemiology,diagnosis,and treatment[J].Clin Geriatr Med,2014,30(3):421-442.
[11] WIMO A,JONSSON L,BOND J,et al.The worldwide economic impact of dementia 2010[J].Alzheimers Dement,2013,9(1):1-11.
[12] MITCHELL S L,TENO J M,KIELY D K,et al.The clinical course of advanced dementia[J].N Engl J Med,2009,361(16):1529-1538.
[13] BECK E R,MCILFATRICK S,HASSON F,et al.Nursing home manager's knowledge,attitudes and beliefs about advance care planning for people with dementia in long-term care settings:A cross-sectional survey[J].J Clin Nur,2017,26(17/18):2633-2645.
[14] NGO J,HOLROYD-LEDUC J M.Systematic review of recent dementia practice guidelines[J].Age Ageing,2015,44(1):25-33.
[15] DEMPSEY D.Advance care planning for people with dementia:Benefits and challenges[J].Int J Palliat Nurs,2013,19(5):227-234.
[16] AMPE S,SEVENANTS A,SMETS T,et al.Advance care planning for nursing home residents with dementia:Policy vs.practice[J].J Adv Nurs,2016,72(3):569-581.
[17] KWAK J,DE LARWELLE J A,VALUCH K O,et al.Role of Advance Care Planning in Proxy Decision Making among Individuals with Dementia and Their Family Caregivers[J].Res Gerontol Nurs,2016,9(2):72-80.
[18] TJIA J,DHARMAWARDENE M,GIVENS J L.Advance Directives among Nursing Home Residents with Mild,Moderate,and Advanced Dementia[J].J Palliat Med,2018,21(1):16-21.
[19] ROBINSON L,DICKINSON C,BAMFORD C,et al.A qualitative study:Professionals' experiences of advance care planning in dementia and palliative care,'a good idea in theory but...'[J].Palliat Med,2013,27(5):401-408.
[20] HARRISON D K,KING M,JONES L,et al.Advance Care Planning in Dementia:Do Family Carers Know the Treatment Preferences of People with Early Dementia?[J].PLoS One,2016,11(7):e0159056.
[21] HILGEMAN M M,ALLEN R S,SNOW A L,et al.Preserving Identity and Planning for Advance Care (PIPAC):Preliminary outcomes from a patient-centered intervention for individuals with mild dementia[J].Aging Ment Health,2014,18(4):411-424.
[22] SONG M K,WARD S E,HEPBURN K,et al.SPIRIT advance care planning intervention in early stage dementias:An NIH stage I behavioral intervention development trial[J].Contemp Clin Trials,2018,71:55-62.
[23] BRAZIL K,CARTER G,CARDWELL C,et al.Effectiveness of advance care planning with family carers in dementia nursing homes:A paired cluster randomized controlled trial[J].Palliat Med,2018,32(3):603-612.
[24] ELWYN G,FROSCH D,THOMSON R,et al.Shared decision making:A model for clinical practice[J].J Gen Intern Med,2012,27(10):1361-1367.
[25] AMPE S,SEVENANTS A,COPPENS E,et al.Study protocol for 'we DECide':Implementation of advance care planning for nursing home residents with dementia[J].J Adv Nurs,2015,71(5):1156-1168.
[26] DONOVAN H S,WARD S E,SONG M K,et al.An update on the representational approach to patient education[J].J Nurs Scholarsh,2007,39(3):259-265.
[27] ROBINSON L,DICKINSON C,ROUSSEAU N,et al.A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia[J].Age Ageing,2012,41(2):263-269.
[28] LEWIS M,RAND E,MULLALY E,et al.Uptake of a newly implemented advance care planning program in a dementia diagnostic service[J].Age Ageing,2015,44(6):1045-1049.
[29] GARDEN G,GREEN S,PIENIAK S,et al.The Bromhead Care Home Service:The impact of a service for care home residents with dementia on hospital admission and dying in preferred place of care[J].Clin Med,2016,16(2):114-118.
[30] HUANG H L,SHYU Y L,WENG L C,et al.Predictors of advance directives among nursing home residents with dementia[J].Int Psychogeriatr,2018,30(3):341-353.
[31] 邓仁丽,陈柳柳,史宝欣,等.中国文化背景下预立医疗照护计划的研究进展[J].中华护理杂志,2015,50(9):1117-1121.
[32] LUK J K H,CHAN F H W.End-of-life care for advanced dementia patients in residential care home:A Hong Kong perspective[J].Ann Palliat Med,2018,7(3):359-364.
[33] CHEONG K,FISHER P,GOH J,et al.Advance care planning in people with early cognitive impairment[J].BMJ Support Palliat Care,2015,5(1):63-69.
[34] CAHILL S,PIERCE M,WERNER P,et al.A systematic review of the public's knowledge and understanding of Alzheimer's disease and dementia[J].Alzheimer Dis Assoc Disord,2015,29(3):255-275.
[35] 王丽英,陆箴琦,胡雁,等.家属对晚期肿瘤患者实施预立医疗照护计划态度的质性研究[J].护理学杂志,2012,27(17):47-50.
[36] 孙也龙.精神障碍患者的预先指示权与自愿治疗[J].中国心理卫生杂志,2013,27(4):249-251.
[37] POPPE M,BURLEIGH S,BANERJEE S.Qualitative evaluation of advanced care planning in early dementia:ACP-ED[J].PLoS One,2013,8(4):e60412.
[38] RYAN T,AMEN K M,MCKEOWN J.The advance care planning experiences of people with dementia,family caregivers and professionals:A synthesis of the qualitative literature[J].Ann Palliat Med,2017,6(4):380-389.
[39] KANG L,LIU X H,ZHANG J,et al.Attitudes toward Advance Directives among Patients and Their Family Members in China[J].J Am Med Dir Assoc,2017,18(9):808.e7-808.e11.
[40] 倪平,曾铁英,夏莹,等.武汉市养老院老年人预前指示现况及影响因素调查[J].护理学杂志,2014,29(3):15-18.
[41] JAIN A,CORRIVEAU S,QUINN K,et al.Video decision aids to assist with advance care planning:A systematic review and meta-analysis[J].BMJ Open,2015,5(6):e007491.
[42] 缪佳芮,陈柳柳,张江辉,等.终末期患者家属在预立医疗照护计划代理决策中的研究及评价[J].医学与哲学,2018,39(6B):75-78.
[43] 缪佳芮,邓仁丽,陈柳柳,等.预立医疗照护计划沟通要素:肿瘤科医务人员的视角[J].医学与哲学,2018,39(8B):81-84.
[44] YANG C L,CHIU T Y,HSIUNG Y F,et al.Which factors have the greatest influence on bereaved families' willingness to execute advance directives in Taiwan?[J].Cancer Nurs,2011,34(2):98-106.
[45] 韩素红,李厚伸,夏丽娜,等.预立医疗照护计划的实践与研究进展[J].中国护理管理,2018,18(3):298-302.
[46] 陈柳柳,邓仁丽,谭景予,等.预立照护计划在肾脏疾病终末期患者应用中的实施综述[J].医学与哲学,2015,36(8B):68-71.
[2] SUDORE R L,FRIED T R.Redefining the "planning" in advance care planning:Preparing for end-of-life decision making[J].Ann Intern Med,2010,153(4):256-261.
[3] 李峥.老年痴呆相关概念辨析[J].中华护理杂志,2011,46(10):1045.
[4] 贾建平.中国痴呆与认知障碍诊治指南[M].北京:人民卫生出版社,2010:195.
[5] World Health Organization.Dementia[EB/OL].(2016-04)[2017-02-22].http://www.who.int/mediacentre/factsheets/fs362/en/.
[6] 李昂,殷淑琴,徐勇,等.2010～2030年中国老年期痴呆的预测[J].中国老年学杂志,2015,35(13):3708-3711.
[7] ASHTON S E,ROE B,JACK B,et al.End of life care:The experiences of advance care planning amongst family caregivers of people with advanced dementia:A qualitative study[J].Dementia,2016,15(5):958-975.
[8] SUDORE R L,LUM H D,YOU J J,et al.Defining Advance Care Planning for Adults:A Consensus Definition from a Multidisciplinary Delphi Panel[J].J Pain Symptom Manage,2017,53(5):821.
[9] GOEDE M,WHEELER M.Advance directives,living wills,and futility in perioperative care[J].Surg Clin North Am,2015,95(2):443-451.
[10] HUGO J,GANGULI M.Dementia and cognitive impairment:Epidemiology,diagnosis,and treatment[J].Clin Geriatr Med,2014,30(3):421-442.
[11] WIMO A,JONSSON L,BOND J,et al.The worldwide economic impact of dementia 2010[J].Alzheimers Dement,2013,9(1):1-11.
[12] MITCHELL S L,TENO J M,KIELY D K,et al.The clinical course of advanced dementia[J].N Engl J Med,2009,361(16):1529-1538.
[13] BECK E R,MCILFATRICK S,HASSON F,et al.Nursing home manager's knowledge,attitudes and beliefs about advance care planning for people with dementia in long-term care settings:A cross-sectional survey[J].J Clin Nur,2017,26(17/18):2633-2645.
[14] NGO J,HOLROYD-LEDUC J M.Systematic review of recent dementia practice guidelines[J].Age Ageing,2015,44(1):25-33.
[15] DEMPSEY D.Advance care planning for people with dementia:Benefits and challenges[J].Int J Palliat Nurs,2013,19(5):227-234.
[16] AMPE S,SEVENANTS A,SMETS T,et al.Advance care planning for nursing home residents with dementia:Policy vs.practice[J].J Adv Nurs,2016,72(3):569-581.
[17] KWAK J,DE LARWELLE J A,VALUCH K O,et al.Role of Advance Care Planning in Proxy Decision Making among Individuals with Dementia and Their Family Caregivers[J].Res Gerontol Nurs,2016,9(2):72-80.
[18] TJIA J,DHARMAWARDENE M,GIVENS J L.Advance Directives among Nursing Home Residents with Mild,Moderate,and Advanced Dementia[J].J Palliat Med,2018,21(1):16-21.
[19] ROBINSON L,DICKINSON C,BAMFORD C,et al.A qualitative study:Professionals' experiences of advance care planning in dementia and palliative care,'a good idea in theory but...'[J].Palliat Med,2013,27(5):401-408.
[20] HARRISON D K,KING M,JONES L,et al.Advance Care Planning in Dementia:Do Family Carers Know the Treatment Preferences of People with Early Dementia?[J].PLoS One,2016,11(7):e0159056.
[21] HILGEMAN M M,ALLEN R S,SNOW A L,et al.Preserving Identity and Planning for Advance Care (PIPAC):Preliminary outcomes from a patient-centered intervention for individuals with mild dementia[J].Aging Ment Health,2014,18(4):411-424.
[22] SONG M K,WARD S E,HEPBURN K,et al.SPIRIT advance care planning intervention in early stage dementias:An NIH stage I behavioral intervention development trial[J].Contemp Clin Trials,2018,71:55-62.
[23] BRAZIL K,CARTER G,CARDWELL C,et al.Effectiveness of advance care planning with family carers in dementia nursing homes:A paired cluster randomized controlled trial[J].Palliat Med,2018,32(3):603-612.
[24] ELWYN G,FROSCH D,THOMSON R,et al.Shared decision making:A model for clinical practice[J].J Gen Intern Med,2012,27(10):1361-1367.
[25] AMPE S,SEVENANTS A,COPPENS E,et al.Study protocol for 'we DECide':Implementation of advance care planning for nursing home residents with dementia[J].J Adv Nurs,2015,71(5):1156-1168.
[26] DONOVAN H S,WARD S E,SONG M K,et al.An update on the representational approach to patient education[J].J Nurs Scholarsh,2007,39(3):259-265.
[27] ROBINSON L,DICKINSON C,ROUSSEAU N,et al.A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia[J].Age Ageing,2012,41(2):263-269.
[28] LEWIS M,RAND E,MULLALY E,et al.Uptake of a newly implemented advance care planning program in a dementia diagnostic service[J].Age Ageing,2015,44(6):1045-1049.
[29] GARDEN G,GREEN S,PIENIAK S,et al.The Bromhead Care Home Service:The impact of a service for care home residents with dementia on hospital admission and dying in preferred place of care[J].Clin Med,2016,16(2):114-118.
[30] HUANG H L,SHYU Y L,WENG L C,et al.Predictors of advance directives among nursing home residents with dementia[J].Int Psychogeriatr,2018,30(3):341-353.
[31] 邓仁丽,陈柳柳,史宝欣,等.中国文化背景下预立医疗照护计划的研究进展[J].中华护理杂志,2015,50(9):1117-1121.
[32] LUK J K H,CHAN F H W.End-of-life care for advanced dementia patients in residential care home:A Hong Kong perspective[J].Ann Palliat Med,2018,7(3):359-364.
[33] CHEONG K,FISHER P,GOH J,et al.Advance care planning in people with early cognitive impairment[J].BMJ Support Palliat Care,2015,5(1):63-69.
[34] CAHILL S,PIERCE M,WERNER P,et al.A systematic review of the public's knowledge and understanding of Alzheimer's disease and dementia[J].Alzheimer Dis Assoc Disord,2015,29(3):255-275.
[35] 王丽英,陆箴琦,胡雁,等.家属对晚期肿瘤患者实施预立医疗照护计划态度的质性研究[J].护理学杂志,2012,27(17):47-50.
[36] 孙也龙.精神障碍患者的预先指示权与自愿治疗[J].中国心理卫生杂志,2013,27(4):249-251.
[37] POPPE M,BURLEIGH S,BANERJEE S.Qualitative evaluation of advanced care planning in early dementia:ACP-ED[J].PLoS One,2013,8(4):e60412.
[38] RYAN T,AMEN K M,MCKEOWN J.The advance care planning experiences of people with dementia,family caregivers and professionals:A synthesis of the qualitative literature[J].Ann Palliat Med,2017,6(4):380-389.
[39] KANG L,LIU X H,ZHANG J,et al.Attitudes toward Advance Directives among Patients and Their Family Members in China[J].J Am Med Dir Assoc,2017,18(9):808.e7-808.e11.
[40] 倪平,曾铁英,夏莹,等.武汉市养老院老年人预前指示现况及影响因素调查[J].护理学杂志,2014,29(3):15-18.
[41] JAIN A,CORRIVEAU S,QUINN K,et al.Video decision aids to assist with advance care planning:A systematic review and meta-analysis[J].BMJ Open,2015,5(6):e007491.
[42] 缪佳芮,陈柳柳,张江辉,等.终末期患者家属在预立医疗照护计划代理决策中的研究及评价[J].医学与哲学,2018,39(6B):75-78.
[43] 缪佳芮,邓仁丽,陈柳柳,等.预立医疗照护计划沟通要素:肿瘤科医务人员的视角[J].医学与哲学,2018,39(8B):81-84.
[44] YANG C L,CHIU T Y,HSIUNG Y F,et al.Which factors have the greatest influence on bereaved families' willingness to execute advance directives in Taiwan?[J].Cancer Nurs,2011,34(2):98-106.
[45] 韩素红,李厚伸,夏丽娜,等.预立医疗照护计划的实践与研究进展[J].中国护理管理,2018,18(3):298-302.
[46] 陈柳柳,邓仁丽,谭景予,等.预立照护计划在肾脏疾病终末期患者应用中的实施综述[J].医学与哲学,2015,36(8B):68-71.