doi:10.3969/j.issn.1674-490X.2024.03.008

Abstract

Abstract: According to relevant national policies, family-centered advance care planning has become a social hot topic of concern and one of the key areas of medical development in China currently. This article elaborates on the necessity and application effects of family-centered advance care planning in cancer patients, analyzes their development obstacles, and proposes corresponding countermeasures and suggestions, aiming to accelerate the standardized construction of family-centered advance care planning in China and promote the further development of hospice care in China.

Key words: family centered, advance care planning, cancer

CLC Number:

References

[1] 曹毛毛,陈万青. GLOBOCAN 2020全球癌症统计数据解读[J].中国医学前沿杂志(电子版), 2021, 13(3): 63-69. DOI: 10.12037/YXQY.2021.03-10.
[2] HO A H, LEUNG P P, TSE D M, et al. Dignity amidst liminality: healing within suffering among Chinese terminal cancer patients[J]. Death Stud, 2013, 37(10): 953-970. DOI: 10.1080/07481187.2012.703078.
[3] MOKDAD A H, DWYER-LINDGREN L, FITZMAURICE C, et al. Trends and patterns of disparities in cancer mortality among US counties, 1980-2014[J]. JAMA, 2017, 317(4): 388-406. DOI: 10.1001/jama.2016.20324.
[4] KIERNER K A, HLADSCHIK-KERMER B, GARTNER V, et al. Attitudes of patients with malignancies towards completion of advance directives[J]. Support Care Cancer, 2010, 18(3): 367-372. DOI: 10.1007/s00520-009-0667-6.
[5] COHEN M G, ALTHOUSE A D, ARNOLD R M, et al. Hope and advance care planning in advanced cancer: is there a relationship?[J]. Cancer, 2022, 128(6): 1339-1345. DOI: 10.1002/cncr.34034.
[6] 邓仁丽,王守碧,张江辉, 等.中西文化视野下预立医疗照护计划在医疗卫生体系中的植入[J].中国护理管理, 2019, 19(3): 321-325. DOI: 10.3969/j.issn.1672-1756.2019.03.001.
[7] SUDORE R L, LUM H D, YOU J J, et al. Defining advance care planning for adults: aconsensus definition from a multidisciplinary Delphi panel[J]. J Pain Symptom Manage, 2017, 53(5): 821-832. DOI: 10.1016/j.jpainsymman.2016.12.331.
[8] MICHAEL N, O'CALLAGHAN C, BAIRD A, et al. Cancer caregivers advocate a patient- and family-centered approach to advance care planning[J]. J Pain Symptom Manage, 2014, 47(6): 1064-1077. DOI: 10.1016/j.jpainsymman.2013.07.009.
[9] CURTIN K B, CHENG Y I, WANG J C, et al. Quality of life of persons living with HIV and congruence with surrogate decision-makers[J]. Qual Life Res, 2019, 28(1): 47-56. DOI: 10.1007/s11136-018-2002-5.
[10] DALLAS R H, KIMMEL A, WILKINS M L, et al. Acceptability of family-centered advanced care planning for adolescents with HIV[J]. Pediatrics, 2016, 138(6): e20161854. DOI: 10.1542/peds.2016-1854.
[11] 李子芬,彭楚君.推动“以家庭为中心”的预立医疗照护计划[J].中国护理管理, 2019, 19(3): 326-329. DOI: 10.3969/j.issn.1672-1756.2019.03.002.
[12] FRATANTONI K, LIVINGSTON J, SCHELLINGER S E, et al. Family-centered advance care planning: what matters most for parents of children with rare diseases[J]. Children, 2022, 9(3): 445. DOI: 10.3390/children9030445.
[13] LENTZ R, BENSON A B, KIRCHER S. Financial toxicity in cancer care: prevalence, causes, consequences, and reduction strategies[J]. J Surg Oncol, 2019, 120(1): 85-92. DOI: 10.1002/jso.25374.
[14] 饶洁.终末期癌症患者治疗的现状调查和相关原因探索[D].武汉:华中科技大学, 2015:10-11.
[15] DAVIDOFF A J, ERTEN M, SHAFFER T, et al. Out-of-pocket health care expenditure burden for Medicare beneficiaries with cancer[J]. Cancer, 2013, 119(6): 1257-1265. DOI: 10.1002/cncr.27848.
[16] BÜTTNER M, KÖNIG H H, LÖBNER M, et al. Out-of-pocket-payments and the financial burden of 502 cancer patients of working age in Germany: results from a longitudinal study[J]. Support Care Cancer, 2019, 27(6): 2221-2228. DOI: 10.1007/s00520-018-4498-1.
[17] 周海平,陈万青,周海英,等.癌症损失对家庭与区域经济的影响[J].中国卫生经济, 2013,32(11): 65-66. DOI: 10.7664/CHE20131122.
[18] HART N H, CRAWFORD-WILLIAMS F, CRICHTON M, et al. Unmet supportive care needs of people with advanced cancer and their caregivers: a systematic scoping review[J]. Crit Rev Oncol Hematol, 2022, 176: 103728. DOI: 10.1016/j.critrevonc.2022.103728.
[19] SHARPE L, CURRAN L, BUTOW P, et al. Fear of cancer recurrence and death anxiety[J]. Psychooncology, 2018, 27(11): 2559-2565. DOI: 10.1002/pon.4783.
[20] KIMMEL A L, WANG J C, SCOTT R K, et al. FAmily CEntered(FACE)advance care planning: study design and methods for a patient-centered communication and decision-making intervention for patients with HIV/AIDS and their surrogate decision-makers[J]. Contemp Clin Trials, 2015, 43: 172-178. DOI: 10.1016/j.cct.2015.06.003.
[21] FRIEBERT S, GROSSOEHME D H, BAKER J N, et al. Congruence gaps between adolescents with cancer and their families regarding values, goals, and beliefs about end-of-life care[J]. JAMA Netw Open, 2020, 3(5): e205424. DOI: 10.1001/jamanetworkopen.2020.5424.
[22] 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. DOI: 10.3761/j.issn.0254-1769.2015.09.021.
[23] CHENG H W B. Advance care planning in Chinese seniors: cultural perspectives[J]. J Palliat Care, 2018, 33(4): 242-246. DOI: 10.1177/0825859718763644.
[24] BARAN C N, SANDERS J J. Communication skills: delivering bad news, conducting a goals of care family meeting, and advance care planning[J]. Prim Care, 2019, 46(3): 353-372. DOI: 10.1016/j.pop.2019.05.003.
[25] 黎东梅,陈锦丽,李丽,等.300名慢性病患者代理决策者预立医疗照护计划参与现状及影响因素分析[J].护理学报, 2023, 30(2): 67-72. DOI: 10.16460/j.issn1008-9969.2023.02.067.
[26] ZENG H M, CHEN W Q, ZHENG R S, et al. Changing cancer survival in China during 2003-15: a pooled analysis of 17 population-based cancer registries[J]. Lancet Glob Health, 2018, 6(5): e555-e567. DOI: 10.1016/S2214-109X(18)30127-X.
[27] 王红倩.以家庭为中心的预立医疗照护计划在晚期癌症患者及家庭主要照顾者中的应用研究[D].昆明:云南中医药大学, 2023:74-76.
[28] LYON M E, JACOBS S, BRIGGS L, et al. A longitudinal, randomized, controlled trial of advance care planning for teens with cancer: anxiety, depression, quality of life, advance directives, spirituality[J]. J Adolesc Health, 2014, 54(6): 710-717. DOI: 10.1016/j.jadohealth.2013.10.206.
[29] CURTIN K B, WATSON A E, WANG J C, et al. Pediatric advance care planning(pACP)for teens with cancer and their families: design of a dyadic, longitudinal RCCT[J]. Contemp Clin Trials, 2017, 62: 121-129. DOI: 10.1016/j.cct.2017.08.016.
[30] 李艾丽莎,张庆林.决策的选择偏好研究述评[J].心理科学进展, 2006, 14(4): 618-624. DOI: 10.3969/j.issn.1671-3710.2006.04.021.
[31] TAN W S, BAJPAI R, HO A H Y, et al. Retrospective cohort analysis of real-life decisions about end-of-life care preferences in a Southeast Asian country[J]. BMJ Open, 2019, 9(2): e024662. DOI: 10.1136/bmjopen-2018-024662.
[32] WANG Y X, ZHANG Y K, HONG Y, et al. Advance directives and end-of-life care: knowledge and preferences of patients with brain Tumours from Anhui, China[J]. BMC Cancer, 2021, 21(1): 25. DOI: 10.1186/s12885-020-07775-4.
[33] BAR-SELA G, BAGON S, MITNIK I, et al. The perception and attitudes of Israeli cancer patients regarding advance care planning[J]. J Geriatr Oncol, 2021, 12(8): 1181-1185. DOI: 10.1016/j.jgo.2021.05.010.
[34] LYON M E, JACOBS S, BRIGGS L, et al. Family-centered advance care planning for teens with cancer[J]. JAMA Pediatr, 2013, 167(5): 460-467. DOI: 10.1001/jamapediatrics.2013.943.
[35] THOMPKINS J D, NEEDLE J, BAKER J N, et al. Pediatric advance care planning and families' positive caregiving appraisals: an RCT[J]. Pediatrics, 2021, 147(6): e2020029330. DOI: 10.1542/peds.2020-029330.
[36] DENG R L, DUAN J Z, ZHANG J H, et al. Advance care planning for frail older people in China: a discussion paper[J].Nurs Ethics, 2019, 26(6): 1696-1706. DOI: 10.1177/0969733018779177.
[37] LYON M E, FRIEBERT S, THOMPKINS J, et al. 96. let's talk: quality of facilitator communication as a determinant of satisfaction with family centered pediatric advance care planning for teens with cancer(FACE-TC PACP)[J]. J Adolesc Health, 2020, 66(2): S50. DOI: 10.1016/j.jadohealth.2019.11.099.
[38] NEEDLE J S, FRIEBERT S, THOMPKINS J D, et al. Effect of the family-centered advance care planning for teens with cancer intervention on sustainability of congruence about end-of-life treatment preferences: arandomized clinical trial[J]. JAMA Netw Open, 2022, 5(7): e2220696. DOI: 10.1001/jamanetworkopen.2022.20696.
[39] GAINES J, FRIEBERT S, BAKER J, et al. Effect of FAmily CEntered(FACE)advance care planning(ACP)on families' appraisals of caregiving for their teens with cancer(SA510B)[J].J Pain Symptom Manag, 2019, 57(2): 446-447. DOI: 10.1016/j.jpainsymman.2018.12.191.
[40] 高茜,胡建萍.食管癌病人预立医疗照护计划准备度调查及影响因素分析[J].循证护理, 2022, 8(17): 2352-2356. DOI: 10.12102/j.issn.2095-8668.2022.17.018.
[41] 预立医疗照护计划ACP.VIP for future care 模型[EB/OL].(2021-06-22)[2023-12-25].https://mp.weixin.qq.com/s?_biz=MzAwNjk4MjE2NA==&mid=2247484229&idx=2&sn=6de6996de1d83622e7024fa7f098c516&chksm=9b045c3 eac73d528f609ea1b8ccbc876e8328fa4c39528952c9809933cc8b368335c4e4382be&mpshare=1&srcid=0702w9acCh7XWM VREWcS0mST&sharer_shareinfo=d3971207146ba1d5f432ba830f2d2788&sharer_shareinfo_first=d3971207146ba1d5f432b a830f2d2788&from=singlemessage&sessionid=1719886712&clicktime=1719888145&enterid=1719888145&ascene=1&fa sttmpl_type=0&fasttmpl_fullversion=7275300-zh_CN-zip&fasttmpl_flag=0&realreporttime=1719888145314&devicetype=android-34&version=2800315a&nettype=WIFI&abtest_cookie=AAACAA%3D%3D&lang=zh_CN&countrycode=CX&expo rtkey=n_ChQIAhIQ50MHz7SDXKfIxdM2P5MYJhL2AQIE97dBBAEAAAAAAIGOBo2BcVoAAAAOpnltbLcz9gKNyK89dVj0 zellS9x0F9rEDdp1iNPgkH7EfD52c90s9GgPbdmRBnSwss3Z0g6sAhKGQWWb4SiCQGHk2cMr1lKdYf7mA6aii1qUdsuUlPZG4TZ8qXd%2BDc%2FUVVHQsqsSmv8Y4mT1KQj1j0DaIvwCB3y6OwAsZltkhxyFcrCTpXb9Um%2FikF5YAxnuVq177V1difb 4mCmiPTOTpIQCUv8N%2FnOUgU8BFfgq0U6PJf6bCUj96kOjRNu0wBbgT4c0DgoVA6mZqkT5fxHIx9O46h0K5%2Ba1ZbpY lDAFqw%3D%3D&pass_ticket=hSIE%2F6%2FfQk9lmPAhjNdZt5gvPbtHJvqwICspwCTcxFQ0NHZ1q9qx4JfBGMx0DaI%2B&wx_header=3&scene=1&subscene=10000.
[42] 肖兴米,马燕,石英,等.以家庭为中心的预立医疗照护计划在肿瘤终末期患者中的应用研究[J].中国护理管理, 2020, 20(2): 185-189. DOI: 10.3969/j.issn.1672-1756.2020.02.008.
[43] 李豪,景孟娟,徐榆林,等.预立医疗照护计划在血液透析患者中的应用研究[J].中华护理杂志, 2022, 57(6): 645-650. DOI: 10.3761/j.issn.0254-1769.2022.06.001.
[44] 王心茹,绳宇.预立医疗照护计划在肿瘤患者中的应用进展[J].中华护理杂志, 2019, 54(2): 306-310. DOI: 10.3761/j.issn.0254-1769.2019.02.029.
[45] 韩知浩,方勇,蔡燕吉,等.晚期癌症患者主要照顾者参与预立医疗照护计划障碍的质性研究[J]. 中华护理杂志, 2023, 58(21): 2624-2630. DOI: 10.3761/j.issn.0254-1769.2023.21.009.
[46] 赵涓旭,宫伟利,郑玲玲,等.晚期癌症患者代理决策者预立医疗照护计划参与现状及影响因素研究[J].护理管理杂志, 2023, 23(6): 453-458. DOI: 10.3969/j.issn.1671-315x.2023.06.009.
[47] 谌永毅,成琴琴,王英,等.护理人员预立医疗照护计划知信行现状及对策分析[J]. 中国护理管理, 2019, 19(3): 334-340. DOI: 10.3969/j.issn.1672-1756.2019.03.004.
[48] WHITEHEAD P, FRECHMAN E, JOHNSTONE-PETTY M, et al. A scoping review of nurse-led advance care planning[J]. Nurs Outlook, 2022, 70(1): 96-118. DOI: 10.1016/j.outlook.2021.08.002.
[49] AURIEMMA C L, O'DONNELL H, KLAIMAN T, et al. How traditional advance directives undermine advance care planning: if you have it in writing, you do not have to worry about it[J]. JAMA Intern Med, 2022, 182(6): 682-684. DOI: 10.1001/jamainternmed.2022.1180.
[50] 刘亚菲,罗蕾,刘昌林.问题提示列表在癌症患者预立医疗照护计划中的应用研究进展[J].护理学杂志, 2023, 38(4): 112-116. DOI: 10.3870/j.issn.1001-4152.2023.04.112.
[51] JOHNSON S B, BUTOW P N, KERRIDGE I, et al. What do patients with cancer and their families value most at the end of life? A critical analysis of advance care planning[J]. Int J Palliat Nurs, 2017, 23(12): 596-604. DOI: 10.12968/ijpn.2017.23.12.596.
[52] VAN SCOY L J, GREEN M J, READING J M, et al. Can playing an end-of-life conversation game motivate people to engage in advance care planning?[J]. Am J Hosp Palliat Care, 2017, 34(8): 754-761. DOI: 10.1177/1049909116656353.
[53] BAKER J N, THOMPKINS J, FRIEBERT S, et al. Effect of FAmily CEntered(FACE)advance care planning(ACP)on families' appraisals of caregiving for their teens with cancer[J]. J Clin Oncol, 2020, 38(15_suppl): e22533. DOI: 10.1200/jco.2020.38.15_suppl.e22533.
[54] TRANG J, HERBERT A, SANSOM-DALY U M. How can advance care planning tools help young People's voices be heard?[J]. J Paediatr Child Health, 2022, 58(8): 1317-1322. DOI: 10.1111/jpc.16095.
[55] JACOBS S, PEREZ J, CHENG Y I, et al. Adolescent end of life preferences and congruence with their parents' preferences: results of a survey of adolescents with cancer[J]. Pediatr Blood Cancer, 2015, 62(4): 710-714. DOI: 10.1002/pbc.25358.
[56] VANDER SMISSEN D, OVERBEEK A, VAN DULMEN S, et al. The feasibility and effectiveness of web-based advance care planning programs: scoping review[J]. J Med Internet Res, 2020, 22(3): e15578. DOI: 10.2196/15578.
[57] NICKEL W K, WEINBERGER S E, GUZE P A, et al. Principles for patient and family partnership in care: an American college of physiciansposition paper[J]. Ann Intern Med, 2018, 169(11): 796-799. DOI: 10.7326/M18-0018.
[58] 王守碧,杨柳,陈柳柳,等.护士在预立医疗照护计划中的角色定位[J].护理学杂志, 2019, 34(17): 94-97. DOI: 10.3870/j.issn.1001-4152.2019.17.094.
[59] OH A, ALLISON T A, MAHONEY K, et al. Front-line hospice staff perceptions of barriers and opportunities to discussing advance care planning with hospice patients and their families[J]. J Am Med Dir Assoc, 2022, 23(7): 1205-1214.e2. DOI: 10.1016/j.jamda.2021.07.014.
[60] BOLT S R, VAN DER STEEN J T, SCHOLS J M G A, et al. The nurse's role in the process of advance care planning[J]. TijdschrGerontolGeriatr, 2021, 52(1): 1875-1881. DOI: 10.36613/tgg.1875-6832/2021.01.02.
[61] OCZKOWSKI S J, CHUNG H O, HANVEY L, et al. Communication tools for end-of-life decision-making in ambulatory care settings: asystematic review and meta-analysis[J]. PLoS One, 2016, 11(4): e0150671. DOI: 10.1371/journal.pone.0150671.
[62] DE VLEMINCK A, PARDON K, BEERNAERT K, et al. Barriers to advance care planning in cancer, heart failure and dementia patients: a focus group study on general practitioners' views and experiences[J]. PLoS One, 2014, 9(1): e84905. DOI: 10.1371/journal.pone.0084905.
[63] MCDARBY M, LLANEZA D, GEORGE L, et al. Mobile applications for advance care planning: acomprehensive review of features, quality, content, and readability[J]. Am J Hosp Palliat Care, 2021, 38(8): 983-994. DOI: 10.1177/1049909120959057.
[64] OWEN L, STEEL A, GOFFE K, et al. A multidisciplinary simulation programme to improve advance care planning skills and engagement across primary and secondary care[J]. Clin Med, 2022, 22(1): 51-57. DOI: 10.7861/clinmed.2021-0240.

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