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%) | Category | Article type | Study characteristics |
|---|---|---|---|
1 Kolarik 2002 [10] | Contemplative, focus not specified | Conceptual paper | List of objectives for ACP: patient objectives, family or surrogate objectives, health care provider objectives, desirable characteristics of the process. |
2 Hackler 2004 [11] | Idem | Ethical paper | Exploration of two kinds of justifications for advance directives, with two case descriptions. |
3 Rietjens 2016 [12] | Idem | Editorial | Editorial for special issue about ACP. |
4 Aitken 1999 [13] | Idem | Overview | Overview article about ACP for family physicians. |
5 Hammes 2001 [14] | Idem | Editorial | Editorial. |
6 Perkins 2007 [15] | Idem | Perspective | Perspective on the role of advance directives. |
7 Schicktanz 2009 [16] | Idem | Ethical paper | Ethical considerations of the interplay between personal and cultural identity in interpreting advance directives. |
8 Sudore 2010 [17] | Idem | Perspective | Perspective on the objective of ACP. |
9 Robins-Browne 2014 [18] | Idem | Ethical paper | Ethical considerations about the complexities of ACP. |
10 Johnson 2017 [19] | Idem | Ethical paper | Ethical considerations about the role of ACP in end-of-life care. |
11 Van Delden 2017 [20] | Idem | Commentary | Commentary on the PREPARE-trial. |
12 Vogel 2011 [21] | Idem | News item | News about the Canadian framework for ACP. |
13 Wheatley 2015 [22] | Idem | Ethical paper | Ethical issues in palliative care, including ACP. |
14 Song 2016 [23] | Empirical, culture-focused | RCT | ACP 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] | Idem | Focus group | Focus 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] | Idem | Interview study | Interviews 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] | Idem | Focus groups | Focus 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-focused | Systematic review | Systematic review of 46 studies examining African American preferences related to end-of-life care and decision making. |
19 Singer 1998 [28] | Empirical, focus not specified | Interview study | Interviews about the purpose of ACP. Subjects: 48 patients on hemodialysis. |
20 Robinson 2011 [29] | Idem | Interview study | Interviews 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] | Idem | Interview study | Interviews 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] | Idem | Delphi study | Delphi study on the definition of ACP. |
23 Rhee 2013 [32] | Idem | Interview study | Interviews on the impact of ACP on interpersonal relationships. Subjects: 17 general practitioners in Australia. |
24 Michael 2017 [33] | Idem | Focus groups | Focus 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-focused | Interview study | Interviews about experiences with and opinions about ACP. Subjects: 140 patients with HIV/AIDS who had participated in an ACP trial. |
26 Johnson 2017 [35] | Idem | Interview study | Interviews about patient autonomy and ACP. Subjects: 11 consultant oncologists and 7 palliative medicine doctors. |
27 Loggers 2014 [36] | Idem | Mixed methods study with survey (quantitative) and interview (qualitative) part | Survey 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] | Idem | Participant observation and interviews | Participant 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] | Idem | Interview study | Interviews 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-focused | Systematic review with thematic analysis | Systematic 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 specified | Ethical and legal perspective | Ethical and legal perspective on self-determination and the risk of overtreatment, with a focus on ACP. |
32 Llewellyn 2017 [41] | Idem | Interview study | Interviews 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-focused | Medical history perspective | Historical perspective on the emergence of advance directives in the USA, as compared to Europe. Focus on cultural differences. |
34 Schmidt 2017 [43] | Contemplative, disease-focused | Overview | Overview article about incorporating ACP on hemodialysis units. |
35 Holley 2005 [44] | Idem | Perspective | Perspective on the timing, purpose, and effect of ACP in patients with end-stage renal disease. |
36 Gastmans 2010 [45] | Idem | Ethical perspective | Ethical perspective on euthanasia and advance euthanasia directives for patients with severe dementia. |
37 Holley 2012 [46] | Idem | Overview | Overview article on the role and timing of ACP for patients with chronic kidney disease and end-stage renal disease. |
Second round (18 articles, 10%) | Category | Article type | Study characteristics |
38 Schwartz 2002 [47] | Empirical, focus not specified | Randomized 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] | Idem | Focus groups | Focus groups on advance care statements. Subjects: 32 older people or their representatives. |
40 Cornally 2015 [49] | Idem | Focus groups | Focus 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-focused | Focus groups | Focus 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] | Idem | Interview study | Interview 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-focused | Ethical perspective | Ethical 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-focused | Overview, historical perspective | Historical 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] | Idem | Overview, historical perspective | Overview of the development and importance of ACP for patients with end-stage renal disease. |
46 Drought 2002 [55] | Review, focus not specified | Review and ethnographic study | Literature 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 specified | Opinion | Opinion article on the role of advance directives. |
48 Levinsky 1996 [57] | Idem | Opinion | Opinion article on the purpose of advance medical planning. |
49 Darr 1996 [58] | Idem | Overview | Overview article on the use of advance directives. |
50 Davis 2002 [59] | Idem | Ethical perspective | Ethical perspective on the concept of precedent autonomy in advance directives. |
51 Edwards 2011 [60] | Idem | Ethical perspective | Ethical perspective on the concept of precedent autonomy and the theory of ‘the other self’ in relation to advance directives. |
52 Ahluwalia 2012 [61] | Idem | Letter to the editor | Comment stating that an earlier article wrongfully used a too narrow definition of ACP. |
53 Wolff 2012 [62] | Idem | Ethical perspective | Ethical 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-focused | Interview study | Interviews on the role of hope in the context of ACP. Subjects: 19 patients with end-stage renal disease. |
55 Piers 2013 [64] | Idem | Interview study | Interviews 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. |