Advance care planning for cancer patients: A systematic review of perceptions and experiences of patients, families, and healthcare providers

Psycho-Oncology

Volumn 25, Issue 4, 2016, Pages 362-386

  Johnson, Stephanie ^a,c   Butow, Phyllis ^a   Kerridge, Ian ^b   Tattersall, Martin ^a  

^a UNIVERSITY OF SYDNEY   (Australia)

^b UNIVERSITY OF SYDNEY   (Australia)

^c UNIVERSITY OF SYDNEY   (Australia)

Author keywords

[No Author keywords available]

Indexed keywords

CANCER PATIENT; CAREGIVER; CULTURAL FACTOR; FAMILY ATTITUDE; HEALTH CARE PLANNING; HEALTH PERSONNEL ATTITUDE; HUMAN; PATIENT ATTITUDE; PATIENT AUTONOMY; PATIENT CARE; PERSONAL EXPERIENCE; PSYCHOLOGICAL ASPECT; REVIEW; SOCIAL ASPECT; SYSTEMATIC REVIEW; TERMINAL CARE; ADULT; ADVANCE CARE PLANNING; FAMILY; FEMALE; FRIEND; HEALTH CARE PERSONNEL; LIVING WILL; MALE; MIDDLE AGED; NEOPLASM; PERCEPTION; PSYCHOLOGY;

ADULT; ADVANCE CARE PLANNING; ADVANCE DIRECTIVES; FAMILY; FEMALE; FRIENDS; HEALTH PERSONNEL; HUMANS; MALE; MIDDLE AGED; NEOPLASMS; PERCEPTION; TERMINAL CARE;

EID: 84945318251     PISSN: 10579249     EISSN: 10991611     Source Type: Journal    
DOI: 10.1002/pon.3926     Document Type: Review

References (60)

1. Romer AL, Hammes BJ,. Communication, trust, and making choices: advance care planning four years on. J Palliat Med 2004; 7 (2): 335-340.
2. Robinson CA,. 'Our best hope is a cure'. Hope in the context of advance care planning. Palliat Support Care 2012; 10 (2): 75-82.
3. Robinson C, Carole A,. Advance care planning: re-visioning our ethical approach. Can J Nurs Res 2011; 43 (2): 18-37.
4. Fried TR, O'Leary JR,. Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning. J Gen Intern Med 2008; 23 (10): 1602-1607.
5. Michael N, O'Callaghan C, Clayton J, et al,. Understanding how cancer patients actualise, relinquish and reject advance care planning: implications for practice. Support Care Canc 2013; 2013 (21): 2195-2205.
6. Kiely BE, Tattersall MH, Stockler MR,. Certain death in uncertain time: informing hope by quantifying a best case scenario. J Clin Oncol 2010; 28: 2802-2804.
7. Peppercorn J, Smith T, Helft P, et al,. American Society of Clinical Oncology statement: toward individualised care for patients with advanced cancer. J Clin Oncol 2011; 29: 755-760.
8. Michael N, O'Callaghan C, Baird A, Hiscock N, Clayton J,. Cancer caregivers advocate a patient- and family-centered approach to advance care planning. J Pain Symptom Manage 2013; 47 (6): 1064-1077.
9. Scott I, Mitchell G, Reymond E, Daly M,. Clinical focus: difficult but necessary conversations-the case for advance care planning. Med J Aust 2013; 199 (662-666)
10. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA 1995; 274 (20):1591- 1598.
11. Danis M, Southerland L, Garrett J, et al,. A prospective study of advance directives for life-sustaining care. New Engl J Med 1991; 324 (13): 882-888.
12. Walling A, Lorenz KA, Dy SM, et al,. Evidence-based recommendations for information and care planning in cancer care. J Clin Oncol 2008; 26 (23): 3896-3902.
13. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A,. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014; 28 (8): 100-1025.
14. Houttekier D, Cohen J, Cools F, Deliens L,. Advance care planning for end-of-life care. Cochrane Database Syst Rev 2012;(2): Art. No.: CD009618. doi: 10.1002/14651858.CD009618
15. Tieman J, Abernethy A, Fazekas B, Currow D,. CareSearch: finding and evaluating Australia's missing palliative care literature. BMC Palliat Care 2005; 4 (1):4. PubMed PMID: doi: 10.1186/1472-684X-4-4.
16. Laidsaar-Powell RC, Butow PN, Bu S, et al,. Physician-patient-companion communication and decision-making: a systematic review of triadic medical consultations. Patient Educ Couns 2013; 91 (1): 3-13.
17. Kmet L, Lee R, Cook L,. Standard quality assessment criteria for evaluating primary research papers from a variety of fields. Alberta Heritage Foundation For Medical Research, 2004.
18. Landis JR, Koch GG,. The measurement of observer agreement for categorical data. Biometrics 1977; 33 (1): 159-174.
19. Thomas J, Harden A,. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008; 8 (1):45. doi: 10.1186/1471-2288-8-45
20. Dow LA, Matsuyama RK, Ramakrishnan V, et al,. Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives. J Clin Oncol 2010; 28 (2): 299-304.
21. Duckworth KE, Forti AM, Russell GB, Naik S, Hurd D, McQuellon RP,. The process of advance care planning in HCT candidates and proxies: self- efficacy, locus of control and anxiety levels. Am J Hosp Palliat Med 2014; 31 (7): 710-716.
22. Fu S, Barber F, Naing A, et al,. Advance care planning in patients with cancer referred to a phase I clinical trials program: the MD Anderson Cancer Center experience. J Clin Oncol 2012; 30 (23): 2891-2896.
23. Oorschot Bv, Schuler M, Simon A, Flentje M,. Advance directives: prevalence and attitudes of cancer patients receiving radiotherapy. Support Care Cancer 2012; 20 (11): 2729-2736.
24. Zhou G, Stoltzfus JC, Houldin AD, Parks SM, Swan BA,. Knowledge, attitudes, and practice behaviors of oncology advanced practice nurses regarding advanced care planning for patients with cancer. Oncol Nurs Forum 2010; 37 (6): E400-E410.
25. Lamont E, Siegler M,. Paradoxes in cancer Patients' advance care planning. J Palliat Med 2000; 3 (1): 27-35.
26. Loberiza FR Jr, Swore-Fletcher BA, Block SD, et al,. Coping styles, health status and advance care planning in patients with hematologic malignancies. Leuk Lymphoma 2011; 52 (12): 2342-2348.
27. Barnes K, Barlow C, Harrington J, et al,. Advance care planning discussions in advanced cancer: analysis of dialogues between patients and care planning mediators. Palliat Support Care 2011; 9 (1): 73-79.
28. Barnes K, Jones L, Tookman A, King M,. Acceptability of advance care planning interview schedule: a focus group. Palliat Med 2007; 21 (1): 23-28.
29. Carrion I, Nedjat-Haiem F, Martinez-Tyson D, Castañeda H,. Advance care planning among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis. Support Care Canc 2013; 21 (5): 1233-1239.
30. Horne G, Seymour J, Payne S,. Maintaining integrity in the face of death: a grounded theory to explain the perspectives of people affected by lung cancer about the expression of wishes for end of life care. Int J Nurs Stud 2012; 49: 718-726.
31. Eliott J, Olver I,. Perceptions of 'good palliative care' orders: a discursive study of cancer Patients' comments. J Palliat Med 2003; 6 (1): 59-68. PubMed PMID: 2006-07156-009.
32. Hwang SS, Chang VT, Cogswell J, Srinivas S, Kasimis B,. Knowledge and attitudes toward end-of-life care in veterans with symptomatic metastatic cancer. Palliat Support Care 2003; 1 (3): 221-230. PubMed PMID: 16594422.
33. McKinley E, Garrett J, Evans A,. Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med 1996; 11: 651-656.
34. Barakat A, Barnes S, Casanova M, Stone M, Shuey K, MIller A,. Advance care planning knowledge and documentation in hospitalised cancer population. Bayl Univ Med Cent Proc 2013; 26 (4): 368-372.
35. Sahm S, Will R, Hommel G,. What are cancer patients' preferences about treatment at the end of life, and who should start talking about it? A comparison with healthy people and medical staff. Support Care Canc 2005; 13 (4): 206-214.
36. Jezewski MA, Brown J, Wu YW, Meeker MA, Feng JY, Bu X,. Oncology nurses' knowledge, attitudes, and experiences regarding advance directives. Oncol Nurs Forum 2005; 32 (2): 319-327. PubMed PMID: 15759069.
37. Stearns L, Butler S, Hollander J,. Patients' and families' receptivity to discussions about future healthcare: decisions and advance directives. Community Oncol 2005; 2 (5): 446-451.
38. Horne G, Seymour J, Shepherd K,. Advance care planning for patients with inoperable lung cancer. Int J Palliat Nurs 2006; 12 (4): 172-178.
39. Jezewski MA, Meeker MA, Schrader M,. Voices of oncology nurses: what is needed to assist patients with advance directives. Cancer Nurs 2003; 26 (2): 105-112.
40. 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. PLoS One 2014; 9 (1):e84905.
41. Almack K, Cox K, Seymour J, Moghaddam N, Porock D,. Communication strategies to initiate conversations planning for end of life care (EOLC). Palliat Med 2010; 24 (4):S102.
42. Boyd K, Barclay S, Chinn D, Thomas K, Sheikh A,. Advance care planning for cancer patients in primary care: a feasibility study. Br J Gen Pract J R Coll Gen Pract 2010; 60 (581): e449-e458.
43. Cherlin E, Fried T, Prigerson H, Schulman-Green D, Johnson-Hurzeler R, Bradley E,. Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said? J Palliat Med 2005; 8 (6): 1176-1185.
44. Samara J, Larkin D, Chan C, Lopez V,. Advance care planning in the oncology settings. Int J Evid Based Healthc 2013; 11 (2): 110-114.
45. Walczak A, Henselmans I, Tattersall MH, et al,. A qualitative analysis of responses to a question prompt list and prognosis and end-of-life care discussion prompts delivered in a communication support program. Psycho-Oncology 2015; 24 (3): 287-293.
46. Cox K, Moghaddam N, Almack K, Pollock K, Seymour J,. Is it recorded in the notes? Documentation of end-of-life care and preferred place to die discussions in the final weeks of life. BMC Palliat Care 2011; 10 (1):18. doi: 10.1186/1472-684x-10-18
47. Vogel RI, Petzel SV, Cragg J, et al,. Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial. Gynecol Oncol 2013; 131 (2): 430-436.
48. Miccinesi G, Bianchi E, Brunelli C, Borreani C,. End-of-life preferences in advanced cancer patients willing to discuss issues surrounding their terminal condition. Eur J Cancer Care 2012; 21 (5): 623-633. PubMed PMID: 2011638471. Language: English. Entry Date: 20120831. Revision Date: 20130913. Publication Type: journal article.
49. El-Sahwi KS, Illuzzi J, Varughese J, et al,. A survey of gynecologic oncologists regarding the end-of-life discussion: a pilot study. Gynecol Oncol 2012; 124: 471-473.
50. Keating NL, Landrum MB, Rogers S, et al,. Physician factors associated with discussion about end of life care. Cancer 2010; 116 (4): 998-1006.
51. Laryionava K, Heuner P, Hiddemann W, Winkler EC,. Framework for timing of the discussion about forgoing cancer-specific treatment based on a qualitative study with oncologists. Support Care Cancer 2015; 23 (3): 715-721.
52. Díaz-Montes TP, Johnson MK, Giuntoli RL, Brown AJ,. Importance and timing of end-of-life care discussions among gynecologic oncology patients. Am J Hosp Palliat Care Med 2013; 30 (1): 59-67. PubMed PMID: 2011805227. Language: English. Entry Date: 20130118. Revision Date: 20130118. Publication Type: journal article.
53. Jones L, Harrington J, Barlow CA, et al,. Advance care planning in advanced cancer: can it be achieved? An exploratory randomized patient preference trial of a care planning discussion. Palliat Support Care 2011; 9 (1): 3-13.
54. Hu W-Y, Huang C-H, Chiu T-Y, Hung S-H, Peng J-K, Chen C-Y,. Factors that influence the participation of healthcare professionals in advance care planning for patients with terminal cancer: a nationwide survey in Taiwan. Soc Sci Med 2010; 70 (11): 1701-1704. PubMed PMID: 2010-09012-009.
55. Johnstone M-J, Kanitsaki O,. Ethics and advance care planning in a culturally diverse society. J Transcult Nurs 2009; 20:406.
56. Seal M,. Patient advocacy and advance care planning in the acute hospital setting. Aust J Adv Nurs 2007; 24:29.
57. Mackenzie C,. Relational autonomy, normative authority and perfectionism. J Soc Philos 2008; 39: 512-533.
58. Sherwin S,. A relational approach to autonomy in health care. In The Politics of Women's Health: Exploring Agency and Autonomy, Sherwin S, (ed.), Temple University Press: Philadelphia, 1998.
59. MacDonald C,. Relational professional autonomy. Camb Q Healthc Ethics 2002; 11: 282-289.
60. Auriemma C, Nguyen C, Bronheim R, et al,. Stability of end-of-life preferences: a systematic review of the evidence. JAMA 2014; 174 (7): 1085-1092.