今日の臨床サポート

Advance Care Planning

著者: 許智栄 神戸市立医療センター中央市民病院 救急科

監修: 徳田安春 一般社団法人 群星沖縄臨床研修センター

著者校正/監修レビュー済:2022/04/27
参考ガイドライン:
  1. 英国老年医学会(British Geriatric Society):Concise guide to good practice. Number 12. Advance Care Planning National Guidelines. February 2009
  1. 厚生労働省:人生の最終段階における医療・ケアの決定プロセスに関するガイドライン 改訂 平成30年3月
  1. 日本老年医学会:「Advance Care Planning推進に関する提言」エンドオブライフに関する小委員会の合意声明(Japan Geriatrics Society “Recommendations for the Promotion of Advance Care Planning”: End-of-Life Issues Subcommittee consensus statement 2020)
  1. ヨーロッパ緩和ケア学会(European Association for Palliative Care):Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. 2017
  1. 米国緩和ケア学会(American Academy of Hospice and Palliative Care):Defining Advance Care Planning for Adults: Consensus Definition From a Multidisciplinary Delphi Panel. 2016
 
患者向け説明資料

概要・推奨   

  1. アドバンスケアプラニング(Advance Care Planning:ACP)は意思決定能力がある患者に対するものであり、決定能力に疑問を認める場合は、その正確な評価が必要である(推奨度1 JG)
  1. ACPとは、話し合いの過程・プロセスであり、その過程において最も重要視されることは、患者の価値観・人生の目標を認識・共有し、それに基づいた患者が受けたい将来の医療について、その家族及び医療従事者と話し合うことである(推奨度1 JG)
  1. 患者が自分で意思決定できなくなる場合を考慮して、代理意思決定者の選定及び患者の希望の記録と定期的な見直しがACPで求められる(推奨度1 JG)
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薬剤監修について:
オーダー内の薬剤用量は日本医科大学付属病院 薬剤部 部長 伊勢雄也 以下、林太祐、渡邉裕次、井ノ口岳洋、梅田将光による疑義照会のプロセスを実施、疑義照会の対象については著者の方による再確認を実施しております。
※薬剤中分類、用法、同効薬、診療報酬は、エルゼビアが独自に作成した薬剤情報であり、 著者により作成された情報ではありません。
尚、用法は添付文書より、同効薬は、薬剤師監修のもとで作成しております。
※同効薬・小児・妊娠および授乳中の注意事項等は、海外の情報も掲載しており、日本の医療事情に適応しない場合があります。
※薬剤情報の(適外/適内/⽤量内/⽤量外/㊜)等の表記は、エルゼビアジャパン編集部によって記載日時にレセプトチェックソフトなどで確認し作成しております。ただし、これらの記載は、実際の保険適応の査定において保険適応及び保険適応外と判断されることを保証するものではありません。また、検査薬、輸液、血液製剤、全身麻酔薬、抗癌剤等の薬剤は保険適応の記載の一部を割愛させていただいています。
(詳細はこちらを参照)
著者のCOI(Conflicts of Interest)開示:
許智栄 : 報酬額((株)ヴェリタスジャパン)[2022年]
監修:徳田安春 : 特に申告事項無し[2022年]

改訂のポイント:
  1. 定期レビューを行い、概要・推奨を加筆し、推奨度およびエビデンスレベルの見直しを行った。
  1. 日本老年医学会および日本医師会によるガイドラインを参考にして、日本におけるACPの定義について加筆した。
  1. 緊急時のACPについて、本人の意思がわからない場合の代理意思決定者との話し合いの仕方について加筆した。

病態・疫学・診察

イントロダクション  
  1. 日本の高齢化率は世界1位であり、平成28年の高齢化率は27.3%となった。今後も増加すると考えられており、2065年には国民の2.6人に1人が65歳以上、4人に1人が75歳以上の高齢者という社会が訪れると予想されている。これに伴い死亡率も上昇を認めており、年間死亡者数がピークに達すると予想される2040年頃まで、今後20年以上にわたって死亡数は増加を続けると見込まれている。
  1. このように高齢化・多死社会を迎えた状況において、患者、特に高齢患者が、人生の最後を迎える過程で医師の果たすべき役割が、問われている。国民の約半数が、自宅で人生の最後を迎えることを希望しているにも関わらず、約80%の人が病院で最後を迎えているという、希望と現実の乖離がある中で、医師の果たすべき役割は非常に大きいと考えられる。
  1. 患者の希望に沿った人生の最終局面を、医療はどのように実現できるのか?その確実な方法の1つとして注目されているのがACPであり、患者が希望する人生の最終局面での医療に関して話し合いが行われ、その希望と実際に受けた医療がより一致していたという効果が2014年のレビューで確認されている(S/M)[1]
定義  
  1. 厳密な意味で世界的に共通する定義は存在しない。2017年にヨーロッパ緩和医療学会が公表した定義は以下の通りである。(参考文献:[2])
  1. アドバンスケアプラニングは、意思決定能力を備えた個人を対象としており、これによって、その個人が価値を置くものを認識し、重篤な病気を抱えることの意味や影響を配慮して将来の治療やケアのゴール及び希望を決定することができるとともに、その決定したことを家族および医療者と話し合うことが実現できる。ACPでは個人の身体的、心理的、社会的およびスピリチュアルな関心事が取り上げられる。また、ある時点で、自分自身で意思決定をすることができなくなったときに、その希望が考慮されるように、ACPでは、個人が代理意思決定者を特定し、その希望を記録して定期的に見直すことを促している。

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文献 

Carmen H M Houben, Martijn A Spruit, Miriam T J Groenen, Emiel F M Wouters, Daisy J A Janssen
Efficacy of advance care planning: a systematic review and meta-analysis.
J Am Med Dir Assoc. 2014 Jul;15(7):477-489. doi: 10.1016/j.jamda.2014.01.008. Epub 2014 Mar 2.
Abstract/Text OBJECTIVE: To systematically review the efficacy of advance care planning (ACP) interventions in different adult patient populations.
DESIGN: Systematic review and meta-analyses.
DATA SOURCES: Medline/PubMed, Cochrane Central Register of Controlled Trials (1966 to September 2013), and reference lists.
STUDY SELECTION: Randomized controlled trials that describe original data on the efficacy of ACP interventions in adult populations and were written in English.
DATA EXTRACTION AND SYNTHESIS: Fifty-five studies were identified. Study details were recorded using a predefined data abstraction form. Methodological quality was assessed using the PEDro scale by 2 independent reviewers. Meta-analytic techniques were conducted using a random effects model. Analyses were stratified for type of intervention: 'advance directives' and 'communication.'
MAIN OUTCOMES AND MEASURES: Primary outcome measures were completion of advance directives and occurrence of end-of-life discussions. Secondary outcomes were concordance between preferences for care and delivered care, knowledge of ACP, end-of-life care preferences, quality of communication, satisfaction with healthcare, decisional conflict, use of healthcare services, and symptoms.
RESULTS: Interventions focusing on advance directives as well as interventions that also included communication about end-of-life care increased the completion of advance directives and the occurrence of end-of-life care discussions between patients and healthcare professionals. In addition, interventions that also included communication about ACP, improved concordance between preferences for care and delivered care and may improve other outcomes, such as quality of communication.
CONCLUSIONS: ACP interventions increase the completion of advance directives, occurrence of discussions about ACP, concordance between preferences for care and delivered care, and are likely to improve other outcomes for patients and their loved ones in different adult populations. Future studies are necessary to reveal the effective elements of ACP and should focus on the best way to implement structured ACP in standard care.

Copyright © 2014 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
PMID 24598477
Judith A C Rietjens, Rebecca L Sudore, Michael Connolly, Johannes J van Delden, Margaret A Drickamer, Mirjam Droger, Agnes van der Heide, Daren K Heyland, Dirk Houttekier, Daisy J A Janssen, Luciano Orsi, Sheila Payne, Jane Seymour, Ralf J Jox, Ida J Korfage, European Association for Palliative Care
Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care.
Lancet Oncol. 2017 Sep;18(9):e543-e551. doi: 10.1016/S1470-2045(17)30582-X.
Abstract/Text Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.

Copyright © 2017 Elsevier Ltd. All rights reserved.
PMID 28884703
Japan Geriatrics Society Subcommittee on End-of-Life Issues, Masafumi Kuzuya, Kaoruko Aita, Yoko Katayama, Tomohiro Katsuya, Mitsunori Nishikawa, Satoshi Hirahara, Hisayuki Miura, Hiromi Rakugi, Masahiro Akishita
Japan Geriatrics Society "Recommendations for the Promotion of Advance Care Planning": End-of-Life Issues Subcommittee consensus statement.
Geriatr Gerontol Int. 2020 Nov;20(11):1024-1028. doi: 10.1111/ggi.14042. Epub 2020 Sep 23.
Abstract/Text The Japan Geriatrics Society has so far announced "The Japan Geriatrics Society Position Statement 2012" and "Guidelines for the Decision-Making Processes in Medical and Long-Term Care for the Elderly - Focusing on the Use of Artificial Hydration and Nutrition" related to end-of-life care for older adults. In 2018, the Ministry of Health, Labor and Welfare revised the "Guidelines for the Decision-Making Processes in Medical and Long-Term Care in the End of Life," recommending the practice of advance care planning (ACP). This was the first time when the Japanese government publicized its stance on ACP. Immediately after the government's announcement, the Japan Medical Association announced its committee report, "The Super-aged Society and the End-of-life Care," which also recommended the practice of ACP. The guidelines were published when the society was experiencing substantial changes related to geriatric care in Japan, and required timely and ethically appropriate decision-making processes. However, because ACP is a concept imported from English-speaking countries, some Japanese people could find it difficult to understand the role and methodology of ACP because of differences in culture and the medical/long-term care system. Therefore, the Japan Geriatrics Society has decided to publish the "Recommendations for the Promotion of Advance Care Planning" for medical and long-term care professionals nationwide with the aim of using the recommendations on a daily basis. The society recognizes ACP as indispensable to improve end-of-life care for individuals, particularly for older adults. We anticipate that the recommendations will provide practical guidance for those strenuously working toward this goal. Geriatr Gerontol Int 2020; 20: 1024-1028..

© 2020 Japan Geriatrics Society.
PMID 32964534
Anouk Overbeek, Ida J Korfage, Lea J Jabbarian, Pascalle Billekens, Bernard J Hammes, Suzanne Polinder, Johan Severijnen, Siebe J Swart, Frederika E Witkamp, Agnes van der Heide, Judith A C Rietjens
Advance Care Planning in Frail Older Adults: A Cluster Randomized Controlled Trial.
J Am Geriatr Soc. 2018 Jul;66(6):1089-1095. doi: 10.1111/jgs.15333. Epub 2018 Apr 2.
Abstract/Text OBJECTIVES: To determine the effectiveness of advance care planning (ACP) in frail older adults.
DESIGN: Cluster randomized controlled trial.
SETTING: Residential care homes in the Netherlands (N=16).
PARTICIPANTS: Care home residents and community-dwelling adults receiving home care (N=201; n=101 intervention; n=100 control). Participants were 75 years and older, frail, and capable of consenting to participation.
INTERVENTION: Adjusted Respecting Choices ACP program.
MEASUREMENTS: The primary outcome was change in patient activation (Patient Activation Measure, PAM-13) between baseline and 12-month follow-up. Secondary outcomes included change in quality of life (SF-12), advance directive (AD) completion, and surrogate decision-maker appointment. Use of medical care in the 12 months after inclusion was also assessed. Multilevel analyses were performed, controlling for clustering effects and differences in demographics.
RESULTS: Seventy-seven intervention participants and 83 controls completed the follow-up assessment. There were no statistically significant differences between the intervention (-0.26±11.2) and control group (-1.43±10.6) in change scores of the PAM (p=.43) or the SF-12. Of intervention group participants, 93% completed an AD, and 94% appointed a decision-maker. Of control participants, 34% completed an AD, and 67% appointed a decision-maker (p<.001). No differences in the use of medical care were found.
CONCLUSIONS: ACP did not increase levels of patient activation or quality of life but did increase completion of ADs and appointment of surrogate decision-makers. It did not affect use of medical care.

© 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society.
PMID 29608789
Elizabeth Weathers, Rónán O'Caoimh, Nicola Cornally, Carol Fitzgerald, Tara Kearns, Alice Coffey, Edel Daly, Ronan O'Sullivan, Ciara McGlade, D William Molloy
Advance care planning: A systematic review of randomised controlled trials conducted with older adults.
Maturitas. 2016 Sep;91:101-9. doi: 10.1016/j.maturitas.2016.06.016. Epub 2016 Jun 23.
Abstract/Text Advance care planning (ACP), involving discussions between patients, families and healthcare professionals on future healthcare decisions, in advance of anticipated impairment in decision-making capacity, improves satisfaction and end-of-life care while respecting patient autonomy. It usually results in the creation of a written advanced care directive (ACD). This systematic review examines the impact of ACP on several outcomes (including symptom management, quality of care and healthcare utilisation) in older adults (>65years) across all healthcare settings. Nine randomised controlled trials (RCTs) were identified by searches of the CINAHL, PubMed and Cochrane databases. A total of 3646 older adults were included (range 72-88 years). Seven studies were conducted with community dwellers and the other two RCTs were conducted in nursing homes. Most studies did not implement a standardised ACD, or measure the impact on quality of end-of-life care or on the death and dying experience. All studies had some risk of bias, with most scoring poorly on the Oxford Quality Scale. While ACP interventions are well received by older adults and generally have positive effects on outcomes, this review highlights the need for well-designed RCTs that examine the economic impact of ACP and its effect on quality of care in nursing homes and other sectors.

Copyright © 2016 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.
PMID 27451328
Karen M Detering, Andrew D Hancock, Michael C Reade, William Silvester
The impact of advance care planning on end of life care in elderly patients: randomised controlled trial.
BMJ. 2010 Mar 23;340:c1345. Epub 2010 Mar 23.
Abstract/Text OBJECTIVE: To investigate the impact of advance care planning on end of life care in elderly patients.
DESIGN: Prospective randomised controlled trial.
SETTING: Single centre study in a university hospital in Melbourne, Australia.
PARTICIPANTS: 309 legally competent medical inpatients aged 80 or more and followed for six months or until death.
INTERVENTIONS: Participants were randomised to receive usual care or usual care plus facilitated advance care planning. Advance care planning aimed to assist patients to reflect on their goals, values, and beliefs; to consider future medical treatment preferences; to appoint a surrogate; and to document their wishes.
MAIN OUTCOME MEASURES: The primary outcome was whether a patient's end of life wishes were known and respected. Other outcomes included patient and family satisfaction with hospital stay and levels of stress, anxiety, and depression in relatives of patients who died.
RESULTS: 154 of the 309 patients were randomised to advance care planning, 125 (81%) received advance care planning, and 108 (84%) expressed wishes or appointed a surrogate, or both. Of the 56 patients who died by six months, end of life wishes were much more likely to be known and followed in the intervention group (25/29, 86%) compared with the control group (8/27, 30%; P<0.001). In the intervention group, family members of patients who died had significantly less stress (intervention 5, control 15; P<0.001), anxiety (intervention 0, control 3; P=0.02), and depression (intervention 0, control 5; P=0.002) than those of the control patients. Patient and family satisfaction was higher in the intervention group.
CONCLUSIONS: Advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives. Trial registration Australian New Zealand clinical trials registry ACTRN12608000539336.

PMID 20332506
Karin T Kirchhoff, Bernard J Hammes, Karen A Kehl, Linda A Briggs, Roger L Brown
Effect of a disease-specific advance care planning intervention on end-of-life care.
J Am Geriatr Soc. 2012 May;60(5):946-50. doi: 10.1111/j.1532-5415.2012.03917.x. Epub 2012 Mar 28.
Abstract/Text OBJECTIVES: To compare patient preferences for end-of-life care with care received at the end of life.
DESIGN: A randomized controlled trial was conducted with individuals with congestive heart failure or end-stage renal disease and their surrogates who were randomized to receive patient-centered advance care planning (PC-ACP) or usual care.
SETTING: Two centers in Wisconsin with associated clinics and dialysis units.
PARTICIPANTS: Of the 313 individuals and their surrogates who completed entry data, 110 died.
INTERVENTION: During PC-ACP, the trained facilitator assessed individual and surrogate understanding of and experiences with the illness, provided information about disease-specific treatment options and their benefits and burden, assisted in documentation of treatment preferences, and assisted the surrogates in understanding the patient's preferences and the surrogate's role.
MEASUREMENTS: Preferences were documented and compared with care received at the end of life according to surrogate interviews or medical charts.
RESULTS: Patients (74%) frequently continued to make their own decisions about care to the end. The experimental group had fewer (1/62) cases in which patients' wishes about cardiopulmonary resuscitation were not met than in the control group (6/48) but not significantly so. Significantly more experimental patients withdrew from dialysis than controls.
CONCLUSION: Patients and their surrogates were generally willing to discuss preferences with a trained facilitator. Most patients received the care they desired at end of life or altered their preferences to be in accord with the care they could receive. A larger sample with surrogate decision-makers is needed to detect significant differences.

© 2012, Copyright the Authors Journal compilation © 2012, The American Geriatrics Society.
PMID 22458336
Kara E Bischoff, Rebecca Sudore, Yinghui Miao, Walter John Boscardin, Alexander K Smith
Advance care planning and the quality of end-of-life care in older adults.
J Am Geriatr Soc. 2013 Feb;61(2):209-14. doi: 10.1111/jgs.12105. Epub 2013 Jan 25.
Abstract/Text OBJECTIVES: To determine whether advance care planning influences quality of end-of-life care.
DESIGN: In this observational cohort study, Medicare data and survey data from the Health and Retirement Study (HRS) were combined to determine whether advance care planning was associated with quality metrics.
SETTING: The nationally representative HRS.
PARTICIPANTS: Four thousand three hundred ninety-nine decedent subjects (mean age 82.6 at death, 55% women).
MEASUREMENTS: Advance care planning (ACP) was defined as having an advance directive (AD), durable power of attorney (DPOA) or having discussed preferences for end-of-life care with a next of kin. Outcomes included previously reported quality metrics observed during the last month of life (rates of hospital admission, in-hospital death, >14 days in the hospital, intensive care unit admission, >1 emergency department visit, hospice admission, and length of hospice ≤ 3 days).
RESULTS: Seventy-six percent of subjects engaged in ACP. Ninety-two percent of ADs stated a preference to prioritize comfort. After adjustment, subjects who engaged in ACP were less likely to die in a hospital (adjusted relative risk (aRR) = 0.87, 95% confidence interval (CI) = 0.80-0.94), more likely to be enrolled in hospice (aRR = 1.68, 95% CI = 1.43-1.97), and less likely to receive hospice for 3 days or less before death (aRR = 0.88, 95% CI = 0.85-0.91). Having an AD, a DPOA or an ACP discussion were each independently associated with a significant increase in hospice use (P < .01 for all).
CONCLUSION: ACP was associated with improved quality of care at the end of life, including less in-hospital death and increased use of hospice. Having an AD, assigning a DPOA and conducting ACP discussions are all important elements of ACP.

© 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.
PMID 23350921
Alexi A Wright, Baohui Zhang, Alaka Ray, Jennifer W Mack, Elizabeth Trice, Tracy Balboni, Susan L Mitchell, Vicki A Jackson, Susan D Block, Paul K Maciejewski, Holly G Prigerson
Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.
JAMA. 2008 Oct 8;300(14):1665-73. doi: 10.1001/jama.300.14.1665.
Abstract/Text CONTEXT: Talking about death can be difficult. Without evidence that end-of-life discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern of inflicting psychological harm.
OBJECTIVE: To determine whether end-of-life discussions with physicians are associated with fewer aggressive interventions.
DESIGN, SETTING, AND PARTICIPANTS: A US multisite, prospective, longitudinal cohort study of patients with advanced cancer and their informal caregivers (n = 332 dyads), September 2002-February 2008. Patients were followed up from enrollment to death, a median of 4.4 months later. Bereaved caregivers' psychiatric illness and quality of life was assessed a median of 6.5 months later.
MAIN OUTCOME MEASURES: Aggressive medical care (eg, ventilation, resuscitation) and hospice in the final week of life. Secondary outcomes included patients' mental health and caregivers' bereavement adjustment.
RESULTS: One hundred twenty-three of 332 (37.0%) patients reported having end-of-life discussions before baseline. Such discussions were not associated with higher rates of major depressive disorder (8.3% vs 5.8%; adjusted odds ratio [OR], 1.33; 95% confidence interval [CI], 0.54-3.32), or more worry (mean McGill score, 6.5 vs 7.0; P = .19). After propensity-score weighted adjustment, end-of-life discussions were associated with lower rates of ventilation (1.6% vs 11.0%; adjusted OR, 0.26; 95% CI, 0.08-0.83), resuscitation (0.8% vs 6.7%; adjusted OR, 0.16; 95% CI, 0.03-0.80), ICU admission (4.1% vs 12.4%; adjusted OR, 0.35; 95% CI, 0.14-0.90), and earlier hospice enrollment (65.6% vs 44.5%; adjusted OR, 1.65;95% CI, 1.04-2.63). In adjusted analyses, more aggressive medical care was associated with worse patient quality of life (6.4 vs 4.6; F = 3.61, P = .01) and higher risk of major depressive disorder in bereaved caregivers (adjusted OR, 3.37; 95% CI, 1.12-10.13), whereas longer hospice stays were associated with better patient quality of life (mean score, 5.6 vs 6.9; F = 3.70, P = .01). Better patient quality of life was associated with better caregiver quality of life at follow-up (beta = .20; P = .001).
CONCLUSIONS: End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.

PMID 18840840
Michael J Green, Jane R Schubart, Megan M Whitehead, Elana Farace, Erik Lehman, Benjamin H Levi
Advance Care Planning Does Not Adversely Affect Hope or Anxiety Among Patients With Advanced Cancer.
J Pain Symptom Manage. 2015 Jun;49(6):1088-96. doi: 10.1016/j.jpainsymman.2014.11.293. Epub 2014 Dec 24.
Abstract/Text CONTEXT: Many physicians avoid advance care planning (ACP) discussions because they worry such conversations will lead to psychological distress.
OBJECTIVES: To investigate whether engaging in ACP using online planning tools adversely affects hope, hopelessness, or anxiety among patients with advanced cancer.
METHODS: Patients with advanced cancer and an estimated survival of two years or less (Intervention group) and a Control group were recruited at a tertiary care academic medical center (2007-2012) to engage in ACP using an online decision aid ("Making Your Wishes Known"). Pre/post and between-group comparisons were made, including hope (Herth Hope Index), hopelessness (Beck Hopelessness Scale), and anxiety (State Trait Anxiety Inventory). Secondary outcomes included ACP knowledge, self-determination, and satisfaction.
RESULTS: A total of 200 individuals completed the study. After engaging in ACP, there was no decline in hope or increase in hopelessness in either the Control or Intervention group. Anxiety was likewise unchanged in the Control group but decreased slightly in the Intervention group. Knowledge of ACP (% correct answers) increased in both the groups, but more so in the Intervention group (13% increase vs. 4%; P<0.01). Self-determination increased slightly in both groups, and satisfaction with the ACP process was greater (P<0.01) in the Intervention than Control group.
CONCLUSION: Engaging in ACP with online planning tools increases knowledge without diminishing hope, increasing hopelessness, or inducing anxiety in patients with advanced cancer. Physicians need not avoid ACP out of concern for adversely affecting patients' psychological well-being.

Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
PMID 25542552
Ina Carola Otte, Corinna Jung, Bernice Simone Elger, Klaus Bally
Advance directives and the impact of timing. A qualitative study with Swiss general practitioners.
Swiss Med Wkly. 2014;144:w14035. doi: 10.4414/smw.2014.14035. Epub 2014 Oct 2.
Abstract/Text PRINCIPLES: Advance directives are seen as an important tool for documenting the wishes of patients who are no longer competent to make decisions in regards to their medical care. Due to their nature, approaching the subject of advance directives with a patient can be difficult for both the medical care provider and the patient. This paper focuses on general practitioners' perspectives regarding the timing at which this discussion should take place, as well as the advantages and disadvantages of the different moments.
METHODS: In 2013, 23 semi-structured face-to-face interviews were performed with Swiss general practitioners. Interviews were analysed using qualitative content analysis.
RESULTS: In our sample, 23 general practitioners provided different options that they felt were appropriate moments: either (a) when the patient is still healthy, (b) when illness becomes predominant, or (c) when a patient has been transferred to a long-term care facility. Furthermore, general practitioners reported uncertainty and discomfort regarding initiating the discussion.
CONCLUSION: The distinct approaches, perspectives and rationales show that there is no well-defined or "right" moment. However, participants often associated advance directives with death. This link caused discomfort and uncertainty, which led to hesitation and delay on the part of general practitioners. Therefore we recommend further training on how to professionally initiate a conversation about advance directives. Furthermore, based on our results and experience, we recommend an early approach with healthy patients paired with later regular updates as it seems to be the most effective way to inform patients about their end-of-life care options.

PMID 25275606
Tim Sharp, Emily Moran, Isla Kuhn, Stephen Barclay
Do the elderly have a voice? Advance care planning discussions with frail and older individuals: a systematic literature review and narrative synthesis.
Br J Gen Pract. 2013 Oct;63(615):e657-68. doi: 10.3399/bjgp13X673667.
Abstract/Text BACKGROUND: Recent years have seen marked improvements in end-of-life care, however concerns have been expressed that services are focused on the needs of patients with cancer. This review focuses on conversations about end-of-life care with frail and older people who have no main overriding diagnosis who are estimated to account for around 40% of deaths.
AIM: To investigate the attitudes of the public and healthcare professionals to advance care planning discussions with frail and older people.
DESIGN AND SETTING: Systematic literature review and narrative synthesis.
METHOD: Articles that related to frail or older individuals and either advance care plans or discussions on end-of-life care were included. Studies of specific conditions or that focused on prognosis, capacity, or resuscitation decisions were excluded.
RESULTS: While a significant minority of frail older individuals would find them unwelcome, the majority would appreciate the chance to discuss end-of-life care, yet most do not have this opportunity. Attitudes to the timing of these discussions were variable, but most perceived the risk of leaving them too late. Most doctors believed it was their professional responsibility to initiate discussions, but felt limited by time pressures and the absence of a precipitating event. A wide range of barriers were identified including the reluctance of family members to discuss end-of-life care, the passive expectation that someone else would decide on an individual's behalf, and significant uncertainty concerning future illness and decline.
CONCLUSION: The marked disparity between the majority of older individuals who would like the opportunity to discuss their end-of-life care and the minority that currently have this opportunity raises important questions if the wishes of this large group in society are to be respected. The challenge is to find effective ways of encouraging dialogue and choice within the constraints of the current healthcare systems and personal circumstances.

PMID 24152480
Hillary D Lum, Rebecca L Sudore, David B Bekelman
Advance care planning in the elderly.
Med Clin North Am. 2015 Mar;99(2):391-403. doi: 10.1016/j.mcna.2014.11.010. Epub 2014 Dec 23.
Abstract/Text Key components of advance care planning (ACP) for the elderly include choosing a surrogate decision maker, identifying personal values, communicating with surrogates and clinicians, documenting wishes in advance directives, and translating values and preferences for future medical care into medical orders. ACP often involves multiple brief discussions over time. This article outlines common benefits and barriers to ACP in primary care, and provides practical approaches to integrating key ACP components into primary care for older adults. Opportunities for multidisciplinary teams to incorporate ACP into brief clinic visits are highlighted.

Published by Elsevier Inc.
PMID 25700590
Emily B Rubin, Anna E Buehler, Scott D Halpern
States Worse Than Death Among Hospitalized Patients With Serious Illnesses.
JAMA Intern Med. 2016 Oct 1;176(10):1557-1559. doi: 10.1001/jamainternmed.2016.4362.
Abstract/Text
PMID 27479808
June R Lunney, Joanne Lynn, Christopher Hogan
Profiles of older medicare decedents.
J Am Geriatr Soc. 2002 Jun;50(6):1108-12.
Abstract/Text OBJECTIVES: To evaluate the usefulness of a clinical scheme to classify older decedents to better understand the issues associated with healthcare use and costs in the last year of life.
DESIGN: We analyzed Medicare claims data for a random sample of 0.1% of all Medicare beneficiaries with expenditures between 1993 and 1998. This sample yielded 7,966 deaths.
SETTING: Medicare claims data.
PARTICIPANTS: Medicare beneficiaries.
MEASUREMENTS: We classified decedents into groups representing four trajectories at the end of life: sudden death, terminal illness, organ failure, and frailty.
RESULTS: Ninety-two percent of decedents were captured by the profiling strategy. The four trajectory groups had distinct patterns of demographics, care delivery, and Medicare expenditures. Frailty was a dominant pattern, with 47% of all decedents, whereas sudden death claimed only 7%; cancer claimed 22%, and organ system failure, 16%.
CONCLUSIONS: The clinical scheme to classify decedents appears to fit most decedents and to form groups with substantial clinical differences. Acknowledging the differences among these groups may be a fruitful way to evaluate expenditures and develop strategies to improve care at the end of life.

PMID 12110073
Walter E Limehouse, V Ramana Feeser, Kelly J Bookman, Arthur Derse
A model for emergency department end-of-life communications after acute devastating events--part II: moving from resuscitative to end-of-life or palliative treatment.
Acad Emerg Med. 2012 Nov;19(11):1300-8. doi: 10.1111/acem.12018.
Abstract/Text The model for emergency department (ED) end-of-life communications after acute devastating events addresses decision-making capacity, surrogates, and advance directives, including legal definitions and application of these steps. Part II concerns communications moving from resuscitative to palliative and end-of-life treatments. After completing the steps involved in determining decision-making, emergency physicians (EPs) should consider starting palliative measures versus continuing resuscitative treatment. As communications related to these end-of-life decisions increasingly fall within the scope of emergency medicine (EM) practice, we need to become educated about and comfortable with them.

© 2012 by the Society for Academic Emergency Medicine.
PMID 23167864
Walter E Limehouse, V Ramana Feeser, Kelly J Bookman, Arthur Derse
A model for emergency department end-of-life communications after acute devastating events--part I: decision-making capacity, surrogates, and advance directives.
Acad Emerg Med. 2012 Sep;19(9):E1068-72. doi: 10.1111/j.1553-2712.2012.01426.x.
Abstract/Text Making decisions for a patient affected by sudden devastating illness or injury traumatizes a patient's family and loved ones. Even in the absence of an emergency, surrogates making end-of-life treatment decisions may experience negative emotional effects. Helping surrogates with these end-of-life decisions under emergent conditions requires the emergency physician (EP) to be clear, making medical recommendations with sensitivity. This model for emergency department (ED) end-of-life communications after acute devastating events comprises the following steps: 1) determine the patient's decision-making capacity; 2) identify the legal surrogate; 3) elicit patient values as expressed in completed advance directives; 4) determine patient/surrogate understanding of the life-limiting event and expectant treatment goals; 5) convey physician understanding of the event, including prognosis, treatment options, and recommendation; 6) share decisions regarding withdrawing or withholding of resuscitative efforts, using available resources and considering options for organ donation; and 7) revise treatment goals as needed. Emergency physicians should break bad news compassionately, yet sufficiently, so that surrogate and family understand both the gravity of the situation and the lack of long-term benefit of continued life-sustaining interventions. EPs should also help the surrogate and family understand that palliative care addresses comfort needs of the patient including adequate treatment for pain, dyspnea, or anxiety. Part I of this communications model reviews determination of decision-making capacity, surrogacy laws, and advance directives, including legal definitions and application of these steps; Part II (which will appear in a future issue of AEM) covers communication moving from resuscitative to end-of-life and palliative treatment. EPs should recognize acute devastating illness or injuries, when appropriate, as opportunities to initiate end-of-life discussions and to implement shared decisions.

© 2012 by the Society for Academic Emergency Medicine.
PMID 22978734
Elie Azoulay, Frédéric Pochard, Nancy Kentish-Barnes, Sylvie Chevret, Jérôme Aboab, Christophe Adrie, Djilali Annane, Gérard Bleichner, Pierre Edouard Bollaert, Michael Darmon, Thomas Fassier, Richard Galliot, Maité Garrouste-Orgeas, Cyril Goulenok, Dany Goldgran-Toledano, Jan Hayon, Mercé Jourdain, Michel Kaidomar, Christian Laplace, Jérôme Larché, Jérôme Liotier, Laurent Papazian, Catherine Poisson, Jean Reignier, Fayçal Saidi, Benoît Schlemmer, FAMIREA Study Group
Risk of post-traumatic stress symptoms in family members of intensive care unit patients.
Am J Respir Crit Care Med. 2005 May 1;171(9):987-94. doi: 10.1164/rccm.200409-1295OC. Epub 2005 Jan 21.
Abstract/Text RATIONALE: Intensive care unit (ICU) admission of a relative is a stressful event that may cause symptoms of post-traumatic stress disorder (PTSD).
OBJECTIVES: Factors associated with these symptoms need to be identified.
METHODS: For patients admitted to 21 ICUs between March and November 2003, we studied the family member with the main potential decision-making role.
MEASUREMENTS: Ninety days after ICU discharge or death, family members completed the Impact of Event Scale (which evaluates the severity of post-traumatic stress reactions), Hospital Anxiety and Depression Scale, and 36-item Short-Form General Health Survey during a telephone interview. Linear regression was used to identify factors associated with the risk of post-traumatic stress symptoms.
MAIN RESULTS: Interviews were obtained for family members of 284 (62%) of the 459 eligible patients. Post-traumatic stress symptoms consistent with a moderate to major risk of PTSD were found in 94 (33.1%) family members. Higher rates were noted among family members who felt information was incomplete in the ICU (48.4%), who shared in decision making (47.8%), whose relative died in the ICU (50%), whose relative died after end-of-life decisions (60%), and who shared in end-of-life decisions (81.8%). Severe post-traumatic stress reaction was associated with increased rates of anxiety and depression and decreased quality of life.
CONCLUSION: Post-traumatic stress reaction consistent with a high risk of PTSD is common in family members of ICU patients and is the rule among those who share in end-of-life decisions. Research is needed to investigate PTSD rates and to devise preventive and early-detection strategies.

PMID 15665319
Kei Ouchi, Andrew J Lawton, Jason Bowman, Rachelle Bernacki, Naomi George
Managing Code Status Conversations for Seriously Ill Older Adults in Respiratory Failure.
Ann Emerg Med. 2020 Dec;76(6):751-756. doi: 10.1016/j.annemergmed.2020.05.039. Epub 2020 Aug 1.
Abstract/Text
PMID 32747084
Julie W Childers, Anthony L Back, James A Tulsky, Robert M Arnold
REMAP: A Framework for Goals of Care Conversations.
J Oncol Pract. 2017 Oct;13(10):e844-e850. doi: 10.1200/JOP.2016.018796. Epub 2017 Apr 26.
Abstract/Text Conversations regarding goals of care with patients who have advanced cancer still occur too late, and oncologists say they lack the training to have these conversations effectively. Experts recommend a number of strategies when having these discussions, including discussing prognosis, responding to patient emotion, exploring values, and often making a recommendation for medical treatments that fit those values. To help learners, from residents to attending oncologists, learn these complex conversational skills, we have developed a framework with a mnemonic, REMAP: Reframe, Expect emotion, Map out patient goals, Align with goals, and Propose a plan. In the reframe step, the oncologist provides a big picture "headline" that lets the patient know things are in a different place. This is followed by actively attending to the patient's emotional response (expect emotion). Then, to map the patient's goals, the oncologist asks open-ended questions that are designed to help the patient think about the values that should guide his or her treatment. The oncologist then aligns with those values by explicitly reflecting them back to the patient. If the patient gives permission, the oncologist will then use those values to propose a medical plan that matches patient values. The processes underlying REMAP encourage oncologists and other clinicians to seek to understand and remain flexible, adapting their recommendations to what they hear from the patient, with ongoing revision based on the shared decision-making process. This will lead to patient-centered decisions that promote better end-of-life care.

PMID 28445100
Alyssia McEwan, Joshua Z Silverberg
Palliative Care in the Emergency Department.
Emerg Med Clin North Am. 2016 Aug;34(3):667-85. doi: 10.1016/j.emc.2016.04.013.
Abstract/Text As the geriatric population increases in the United States, there is an increase in number of visits to emergency departments for end-of-life and palliative care. This provides the emergency physician with a unique opportunity to alleviate and prevent further suffering in this vulnerable population. Competency in communication strategies that support shared decision making and familiarity with medicolegal terminology increase physician confidence about addressing complaints at the end of life. Familiarity with evidence-based recommendations for symptom management of pain at the end of life aids the emergency physician in creating a positive experience for the patient and their loved ones.

Copyright © 2016 Elsevier Inc. All rights reserved.
PMID 27475020

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