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Table 3 Included articles, analyzed in rounds 1 and 2

From: Underlying goals of advance care planning (ACP): a qualitative analysis of the literature

First round (37 articles, 20%)CategoryArticle typeStudy characteristics
1 Kolarik 2002 [10]Contemplative, focus not specifiedConceptual paperList of objectives for ACP: patient objectives, family or surrogate objectives, health care provider objectives, desirable characteristics of the process.
2 Hackler 2004 [11]IdemEthical paperExploration of two kinds of justifications for advance directives, with two case descriptions.
3 Rietjens 2016 [12]IdemEditorialEditorial for special issue about ACP.
4 Aitken 1999 [13]IdemOverviewOverview article about ACP for family physicians.
5 Hammes 2001 [14]IdemEditorialEditorial.
6 Perkins 2007 [15]IdemPerspectivePerspective on the role of advance directives.
7 Schicktanz 2009 [16]IdemEthical paperEthical considerations of the interplay between personal and cultural identity in interpreting advance directives.
8 Sudore 2010 [17]IdemPerspectivePerspective on the objective of ACP.
9 Robins-Browne 2014 [18]IdemEthical paperEthical considerations about the complexities of ACP.
10 Johnson 2017 [19]IdemEthical paperEthical considerations about the role of ACP in end-of-life care.
11 Van Delden 2017 [20]IdemCommentaryCommentary on the PREPARE-trial.
12 Vogel 2011 [21]IdemNews itemNews about the Canadian framework for ACP.
13 Wheatley 2015 [22]IdemEthical paperEthical issues in palliative care, including ACP.
14 Song 2016 [23]Empirical, culture-focusedRCTACP intervention ‘SPIRIT’ vs. usual care.
Subjects: 210 dyads of patients on dialysis and their surrogates; subgroup analysis of African Americans vs. whites.
Outcome measures: dyad congruence on goals of care, surrogate decision-making confidence, patient decisional conflict, surrogate anxiety, surrogate depression, surrogate post-traumatic distress symptoms.
15 Asai 1997 [24]IdemFocus groupFocus group on life-sustaining treatments for terminally ill patients and attitudes towards advance directives and possible barriers to using them in the clinical setting.
Subjects: 7 specialists in internal medicine from Japan.
16 Perkins 2002 [25]IdemInterview studyInterviews about cultural attitudes influcancing decisions whether to perform ACP.
Subjects: a purposive sample of 26 Mexican-American, 18 Euro-American, and 14 African-American inpatients in Texas, USA.
17 Ko 2012 [26]IdemFocus groupsFocus group and interview study to explore knowledge, attitudes, and behavior about advance directives in Korean Americans.
Subjects: 23 Korean Americans.
18 Wicher 2012 [27]Review, culture-focusedSystematic reviewSystematic review of 46 studies examining African American preferences related to end-of-life care and decision making.
19 Singer 1998 [28]Empirical, focus not specifiedInterview studyInterviews about the purpose of ACP.
Subjects: 48 patients on hemodialysis.
20 Robinson 2011 [29]IdemInterview studyInterviews about the applicability and usefulness of an ACP intervention and the ACP process.
Subjects: 9 dyads of patients with advanced lung cancer and a family member, who participated in an ACP intervention.
21 Jeong 2012 [30]IdemInterview studyInterviews based on the ‘Values Clarification Worksheet’.
Subjects: 3 residents living in an residential aged care facility in Australia, 11 family members, and 13 registered nurses.
22 Sudore 2017 [31]IdemDelphi studyDelphi study on the definition of ACP.
23 Rhee 2013 [32]IdemInterview studyInterviews on the impact of ACP on interpersonal relationships.
Subjects: 17 general practitioners in Australia.
24 Michael 2017 [33]IdemFocus groupsFocus groups exploring awareness, attitudes, and experiences of ACP.
Subjects: 15 community dwelling older people and 27 unrelated offspring/caregivers of older people.
25 Martin 1999 [34]Empirical, disease-focusedInterview studyInterviews about experiences with and opinions about ACP.
Subjects: 140 patients with HIV/AIDS who had participated in an ACP trial.
26 Johnson 2017 [35]IdemInterview studyInterviews about patient autonomy and ACP.
Subjects: 11 consultant oncologists and 7 palliative medicine doctors.
27 Loggers 2014 [36]IdemMixed methods study with survey (quantitative) and interview (qualitative) partSurvey and interview about experiences with ACP.
Subjects: 18 patients after hematopoietic cell transplants and 11 bereaved caregivers of patients who had died after hematopoietic cell transplant.
Outcome measures (quantitative): having a living will; having a formally designated proxy; having discussed some aspect of ACP with family/friend prior to transplant; perceptions of the value of ACP; having discussed mortality risk with the medical team pre transplantation; hope; medical team’s commitment.
28 Thoresen 2016 [37]IdemParticipant observation and interviewsParticipant observation of ACP conversations, followed by interviews.
Subjects: 7 nursing home patients in 7 different nursing homes in Norway and the relatives who joined the ACP conversation.
29 Sellars 2017 [38]IdemInterview studyInterviews about patient and caregiver perspectives on ACP.
Subjects: 24 patients with end stage renal disease and their caregivers (n = 15).
30 Johnson 2016 [39]Review, disease-focusedSystematic review with thematic analysisSystematic review of perceptions and experiences on ACP of cancer patients, their families, and health care providers. Thematic analysis was performed on the included studies: 19 quantitative studies, 17 qualitative studies, 4 mixed methods studies.
31 Mehlis 2016 [40]Review, focus not specifiedEthical and legal perspectiveEthical and legal perspective on self-determination and the risk of overtreatment, with a focus on ACP.
32 Llewellyn 2017 [41]IdemInterview studyInterviews about death and dying and reflections on the effect of these conversations.
Subjects: 21 healthy adults 54–65 years old.
33 Sanchez-Gonzalez 1997 [42]Contemplative, culture-focusedMedical history perspectiveHistorical perspective on the emergence of advance directives in the USA, as compared to Europe. Focus on cultural differences.
34 Schmidt 2017 [43]Contemplative, disease-focusedOverviewOverview article about incorporating ACP on hemodialysis units.
35 Holley 2005 [44]IdemPerspectivePerspective on the timing, purpose, and effect of ACP in patients with end-stage renal disease.
36 Gastmans 2010 [45]IdemEthical perspectiveEthical perspective on euthanasia and advance euthanasia directives for patients with severe dementia.
37 Holley 2012 [46]IdemOverviewOverview article on the role and timing of ACP for patients with chronic kidney disease and end-stage renal disease.
Second round (18 articles, 10%)CategoryArticle typeStudy characteristics
38 Schwartz 2002 [47]Empirical, focus not specifiedRandomized controlled trial (pilot study)Pilot randomized controlled trial of an ACP intervention.
Subjects: 61 ambulatory geriatric patients.
Intervention: ACP discussion with a trained nurse facilitator and documentation of patient goals and preferences.
Control: Massachusetts Health Care Proxy form.
Outcome measures: knowledge of ACP; treatment preferences (and congruence between patient and health care agents; response shifts in values; quality of life.
39 Seymour 2004 [48]IdemFocus groupsFocus groups on advance care statements.
Subjects: 32 older people or their representatives.
40 Cornally 2015 [49]IdemFocus groupsFocus groups on the implementation of the ‘Let me decide’ ACP program.
Subjects: 15 clinical nurse managers and 2 directors of nursing in long term care facilities where the ‘Let me decide’ ACP program had been implemented.
41 Stanford 2013 [50]Empirical, culture-focusedFocus groupsFocus group study on the perceived relevance of ACP in Knysna, South Africa.
Subjects: 51 participants including pastors, hospice staff, teachers, and community caregivers in Knysna, South Africa.
42 Lee 2016 [51]IdemInterview studyInterview study on signing one’s own do-not-resuscitate directive among older nursing home residents in Taiwan.
Subjects: 11 older nursing home residents from Taiwan.
43 Zientek 2006 [52]Contemplative, culture-focusedEthical perspectiveEthical considerations regarding end-of-life care and the role of advance directives in Texas, and their impact on Roman Catholic health care providers.
44 Prendergast 2001 [53]Contemplative, disease-focusedOverview, historical perspectiveHistorical overview of the development of ACP in the first decade since the Patient Self-Determination Act, with a focus on its importance for intensive care units.
45 Kuhlmann 2016 [54]IdemOverview, historical perspectiveOverview of the development and importance of ACP for patients with end-stage renal disease.
46 Drought 2002 [55]Review, focus not specifiedReview and ethnographic studyLiterature review on the role of choice in end-of-life decision making, followed by an ethnographic study.
Subjects: 88 terminally ill patients with solid tumor cancer or AIDS who were followed longitudinally, together with 1–3 of their family members or friends, and 2 of their outpatient clinic providers.
47 Robertson 1991 [56]Contemplative, focus not specifiedOpinionOpinion article on the role of advance directives.
48 Levinsky 1996 [57]IdemOpinionOpinion article on the purpose of advance medical planning.
49 Darr 1996 [58]IdemOverviewOverview article on the use of advance directives.
50 Davis 2002 [59]IdemEthical perspectiveEthical perspective on the concept of precedent autonomy in advance directives.
51 Edwards 2011 [60]IdemEthical perspectiveEthical perspective on the concept of precedent autonomy and the theory of ‘the other self’ in relation to advance directives.
52 Ahluwalia 2012 [61]IdemLetter to the editorComment stating that an earlier article wrongfully used a too narrow definition of ACP.
53 Wolff 2012 [62]IdemEthical perspectiveEthical perspective on the role of autonomy, quality of life, and advance directives in end-of-life decision making for patients with dementia.
54 Davison 2006 [63]Empirical, disease-focusedInterview studyInterviews on the role of hope in the context of ACP.
Subjects: 19 patients with end-stage renal disease.
55 Piers 2013 [64]IdemInterview studyInterviews on the views of older people on ACP.
Subjects: 38 older people (71–104 years old) with limited prognosis due to malignancy, organ failure, or frailty.