The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models (n = 14) followed by family-centered (n = 11) and behavioral change models (n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.
AlmyroudiA.DegnerL. F.PaikaV.PavlidisN.HyphantisT. (2011). Decision-making preferences and information needs among Greek breast cancer patients. Psycho-Oncology, 20, 871-879. doi:10.1002/pon.1798
2.
AmalrajS.StarkweatherC.NguyenC.NaeimA. (2009). Health literacy, communication, and treatment decision-making in older cancer patients. Oncology, 23, 369-375.
3.
BackM. F.HuakC. Y. (2005). Family centred decision making and non-disclosure of diagnosis in a South East Asian oncology practice. Psycho-Oncology, 14, 1052-1059. doi:10.1002/pon.918
4.
BakitasM.AhlesT. A.SkallaK.BrokawF. C.ByockI.HanscomB.. . . HegelM. T. (2008). Proxy perspectives regarding end-of-life care for persons with cancer. Cancer, 112, 1854-1861. doi:10.1002/cncr.23381
5.
BarryM. J.Edgman-LevitanS. (2012). Shared decision making–pinnacle of patient-centered care. New England Journal of Medicine, 366, 780-781. doi:10.1056/NEJMp1109283
6.
BelangerE.RodriguezC.GroleauD. (2011). Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis. Palliative Medicine, 25, 242-261. doi:10.1177/0269216310389348
7.
CampbellM.EganM.LorencT.BondL.PophamF.FentonC.BenzevalM. (2014). Considering methodological options for reviews of theory: Illustrated by a review of theories linking income and health. Systematic Reviews, 3, 114. doi:10.1186/2046-4053-3-114
8.
CharlesC.GafniA.WhelanT. (1997). Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science & Medicine, 44, 681-692.
9.
CharlesC.GafniA.WhelanT. (1999). Decision-making in the physician-patient encounter: Revisiting the shared treatment decision-making model. Social Science & Medicine, 49, 651-661.
10.
ChinnP. L.KramerM. K. (2004). Theory and nursing: A systematic approach (6th ed.). St. Louis, MO: Mosby.
11.
ConnorS. R.EganK. A.KwiloszD. M.LarsonD. G.ReeseD. J. (2002). Interdisciplinary approaches to assisting with end-of-life care and decision making. American Behavioral Scientist, 46, 340-356. doi:10.1177/000276402237768
12.
CristanchoS. M.ApramianT.VanstoneM.LingardL.OttM.ForbesT.NovickR. (2016). Thinking like an expert: Surgical decision making as a cyclical process of being aware. The American Journal of Surgery, 211, 64-69. doi:10.1016/j.amjsurg.2015.03.010
13.
de GraaffF. M.FranckeA. L.van den MuijsenberghM. E.van der GeestS. (2012). Understanding and improving communication and decision-making in palliative care for Turkish and Moroccan immigrants: A multiperspective study. Ethnicity & Health, 17, 363-384. doi:10.1080/13557858.2011.645152
14.
DesHarnaisS.CarterR. E.HennessyW.KurentJ. E.CarterC. (2007). Lack of concordance between physician and patient: Reports on end-of-life care discussions. Journal of Palliative Medicine, 10, 728-740. doi:10.1089/jpm.2006.2543
DrevdahlD. J.DorcyK. S. (2012). Transitions, decisions, and regret: Order in chaos after a cancer diagnosis. Advances in Nursing Science, 35, 222-235.
17.
EdwardsS. B.OlsonK.KoopP. M.NorthcottH. C. (2012). Patient and family caregiver decision making in the context of advanced cancer. Cancer Nursing, 35, 178-186. doi:10.1097/ncc.0b013e31822786f6
18.
EliottJ. A.OlverI. (2011). Dying cancer patients talk about physician and patient roles in DNR decision making. Health Expectations, 14, 147-158. doi:10.1111/j.1369-7625.2010.00630.x
19.
FerrellB. R.ChuD. Z. J.WagmanL.JuarezG.BornemanT.CullinaneC.McCahillL. E. (2003). Patient and surgeon decision making regarding surgery for advanced cancer. Oncology Nursing Forum, 30, E106-E114. doi:10.1188/03.ONF.E106-E114
20.
FranceE. F.RingN.ThomasR.NoyesJ.MaxwellM.JepsonR. (2014). A methodological systematic review of what’s wrong with meta-ethnography reporting. BMC Medical Research Methodology, 14, Article 119. doi:10.1186/1471-2288-14-119
21.
GardnerD. S. (2008). Cancer in a dyadic context: Older couples’ negotiation of ambiguity and search for meaning at the end of life. Journal of Social Work in End-of-Life & Palliative Care, 4, 135-159. doi:10.1080/15524250802353959
22.
GattellariM.VoigtK. J.ButowP. N.TattersallM. H. N. (2002). When the treatment goal is not cure: Are cancer patients equipped to make informed decisions?Journal of Clinical Oncology, 20, 503-513.
23.
HenochI.LovgrenM.Wilde-LarssonB.TishelmanC. (2012). Perception of quality of care: Comparison of the views of patients’ with lung cancer and their family members. Journal of Clinical Nursing, 21, 585-594. doi:10.1111/j.1365-2702.2011.03923.x
24.
HeylandD. K.FrankC.GrollD.PichoraD.DodekP.RockerG.GafniA. (2006). Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously ill hospitalized patients and family members. Chest, 130, 419-428. doi:10.1378/chest.130.2.419
25.
HeylandD. K.TranmerJ.O’CallaghanC. J.GafniA. (2003). The seriously ill hospitalized patient: Preferred role in end-of-life decision making?Journal of Critical Care, 18, 3-10.
26.
HindererK. A.FriedmannE.FinsJ. J. (2015). Withdrawal of life-sustaining treatment: Patient and proxy agreement: A secondary analysis of “contracts, covenants, and advance care planning.”Dimensions of Critical Care Nursing, 34, 91-99. doi:10.1097/DCC.0000000000000097
27.
HorneG.SeymourJ.PayneS. (2012). 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. International Journal of Nursing Studies, 49, 718-726. doi:10.1016/j.ijnurstu.2011.12.003
28.
Institute of Medicine. (2014). Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: National Academies Press.
29.
KlinkenbergM.WillemsD. L.Onwuteaka-PhilipsenB. D.DeegD. J.van der WalG. (2004). Preferences in end-of-life care of older persons: After-death interviews with proxy respondents. Social Science & Medicine, 59, 2467-2477. doi:10.1016/j.socscimed.2004.04.006
30.
KoedootC. G.de HaanR. J.StiggelboutA. M.StalmeierP. F.de GraeffA.BakkerP. J.de HaesJ. C. (2003). Palliative chemotherapy or best supportive care? A prospective study explaining patients’ treatment preference and choice. British Journal of Cancer, 89, 2219-2226. doi:10.1038/sj.bjc.6601445
31.
KoharaI.InoueT. (2010). Searching for a way to live to the end: Decision-making process in patients considering participation in cancer Phase I clinical trials. Oncology Nursing Forum, 37, E124-E132. doi:10.1188/10.ONF.E124-E132
32.
KramerB. J.KavanaughM.Trentham-DietzA.WalshM.YonkerJ. A. (2010). Predictors of family conflict at the end of life: The experience of spouses and adult children of persons with lung cancer. The Gerontologist, 50, 215-225. doi:10.1093/geront/gnp121
33.
LorencT.PetticrewM.WhiteheadM.NearyD.ClaytonS.WrightK.. . . RentonA. (2014). Crime, fear of crime and mental health: Synthesis of theory and systematic reviews of interventions and qualitative evidence (Public Health Research, No. 2.2). Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK262845/
34.
MaidaV.PeckJ.EnnisM.BrarN.MaidaA. R. (2010). Preferences for active and aggressive intervention among patients with advanced cancer. BMC Cancer, 10, Article 592. doi:10.1186/1471-2407-10-592
35.
McQuistonC. M.CampbellJ. C. (1997). Theoretical substruction: A guide for theory testing research. Nursing Science Quarterly, 10, 117-123.
36.
MeekerM. A. (2011). Responsive care management: Family decision makers in advanced cancer. Journal of Clinical Ethics, 22, 107-122.
37.
MehtaA.CohenS. R.CarnevaleF. A.EzerH.DucharmeF. (2010). Family caregivers of palliative cancer patients at home: The puzzle of pain management. Journal of Palliative Care, 26, 78-87.
38.
MehtaA.CohenS. R.EzerH.CarnevaleF. A.DucharmeF. (2011). Striving to respond to palliative care patients’ pain at home: A puzzle for family caregivers. Oncology Nursing Forum, 38(1), E37-E45. doi:10.1188/11.ONF.E37-E45
39.
MichaelN.O’CallaghanC.BairdA.HiscockN.ClaytonJ. (2014). Cancer caregivers advocate a patient- and family-centered approach to advance care planning. Journal of Pain and Symptom Management, 47, 1064-1077. doi:10.1016/j.jpainsymman.2013.07.009
40.
MoH. N.ShinD. W.WooJ. H.ChoiJ. Y.KangJ.BaikY. J.. . . ChoS. H. (2012). Is patient autonomy a critical determinant of quality of life in Korea? End-of-life decision making from the perspective of the patient. Palliative Medicine, 26, 222-231. doi:10.1177/0269216311405089
41.
MurrayM. A.O’ConnorA. M.FisetV.ViolaR. (2003). Women’s decision-making needs regarding place of care at end of life. Journal of Palliative Care, 19, 176-184.
42.
MurrayS. A.KendallM.BoydK.SheikhA. (2005). Illness trajectories and palliative care. British Medical Journal, 330, 1007-1011. doi:10.1136/bmj.330.7498.1007
NoblitG. W.HareR. D. (1988). Meta-ethnography: Synthesizing qualitative studies. Newbury Park, CA: SAGE.
47.
NogueraA.YennurajalingamS.Torres-VigilI.ParsonsH. A.DuarteE. R.PalmaA.. . . BrueraE. (2014). Decisional control preferences, disclosure of information preferences, and satisfaction among Hispanic patients with advanced cancer. Journal of Pain and Symptom Management, 47, 896-905. doi:10.1016/j.jpainsymman.2013.06.010
48.
NolanM. T.HughesM. T.KubJ.TerryP. B.AstrowA.ThompsonR. E.. . . SulmasyD. P. (2009). Development and validation of the family decision-making self-efficacy scale. Palliative & Supportive Care, 7, 315-321. doi:10.1017/S1478951509990241
49.
NolanM. T.KubJ.HughesM. T.TerryP. B.AstrowA. B.CarboC. A.. . . SulmasyD. P. (2008). Family health care decision making and self-efficacy with patients with ALS at the end of life. Palliative & Support Care, 6, 273-280. doi:10.1017/S1478951508000412
OhnsorgeK.GudatH.Rehmann-SutterC. (2014). What a wish to die can mean: Reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care. BMC Palliative Care, 13, Article 38. doi:10.1186/1472-684X-13-38
52.
OzanneE. M.PartridgeA.MoyB.EllisK. J.SepuchaK. R. (2009). Doctor-patient communication about advance directives in metastatic breast cancer. Journal of Palliative Medicine, 12, 547-553. doi:10.1089/jpm.2008.0254
53.
PainterJ. E.BorbaC. P.HynesM.MaysD.GlanzK. (2008). The use of theory in health behavior research from 2000 to 2005: A systematic review. Annals of Behavioral Medicine, 35, 358-362. doi:10.1007/s12160-008-9042-y
54.
ReedP. G.ShearerN. B. C. (2009). Perspectives on nursing theory (5th ed.). Philadelphia, PA: Lippincott Williams & Wilkins.
55.
RoseJ. H.O’TooleE. E.DawsonN. V.LawrenceR.GurleyD.ThomasC.. . . CohenH. J. (2004). Perspectives, preferences, care practices, and outcomes among older and middle-aged patients with late-stage cancer. Journal of Clinical Oncology, 22, 4907-4917.
56.
RosenthalS. A.NolanM. T. (2013). A meta-ethnography and theory of parental ethical decision making in the neonatal intensive care unit. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 42, 492-502. doi:10.1111/1552-6909.12222
57.
SegalU. A. (1982). The cyclical nature of decision making: An exploratory empirical investigation. Small Group Research, 13, 333-348.
58.
SharfB. F.StelljesL. A.GordonH. S. (2005). “A little bitty spot and I’m a big man”: Patients’ perspectives on refusing diagnosis or treatment for lung cancer. Psycho-Oncology, 14, 636-646.
59.
SiminoffL. A.RoseJ. H.ZhangA.ZyzanskiS. J. (2006). Measuring discord in treatment decision-making; progress toward development of a cancer communication and decision-making assessment tool. Psycho-Oncology, 15, 528-540.
60.
SmithT. J.DowL. A.ViragoE. A.KhatcheressianJ.MatsuyamaR.LyckholmL. J. (2011). A pilot trial of decision aids to give truthful prognostic and treatment information to chemotherapy patients with advanced cancer. Journal of Supportive Oncology, 9, 79-86. doi:10.1016/j.suponc.2010.12.005
61.
SteinR. A.SharpeL.BellM. L.BoyleF. M.DunnS. M.ClarkeS. J. (2013). Randomized controlled trial of a structured intervention to facilitate end-of-life decision making in patients with advanced cancer. Journal of Clinical Oncololgy, 31, 3403-3410. doi:10.1200/JCO.2011.40.8872
62.
TangS. T.LiuT. W.LaiM. S.LiuL. N.ChenC. H. (2005). Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan. Journal of Pain and Symptom Management, 30, 510-518. doi:10.1016/j.jpainsymman.2005.05.019
ThomasJ.HardenA. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8, Article 45. doi:10.1186/1471-2288-8-45
65.
ToyeF.SeersK.AllcockN.BriggsM.CarrE.BarkerK. (2014). Meta-ethnography 25 years on: Challenges and insights for synthesising a large number of qualitative studies. BMC Medical Research Methodology, 14, Article 80. doi:10.1186/1471-2288-14-80
VogelR. I.PetzelS. V.CraggJ.McClellanM.ChanD.DicksonE.. . . GellerM. A. (2013). Development and pilot of an advance care planning website for women with ovarian cancer: A randomized controlled trial. Gynecologic Oncology, 131, 430-436. doi:10.1016/j.ygyno.2013.08.017
68.
VolkerD. L.WuH.-L. (2011). Cancer patients’ preferences for control at the end of life. Qualitative Health Research, 21, 1618-1631. doi:10.1177/1049732311415287
69.
WalczakA.HenselmansI.TattersallM. H.ClaytonJ. M.DavidsonP. M.YoungJ.. . . ButowP. N. (2015). 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, 24, 287-293. doi:10.1002/pon.3635
70.
WaldropD. P.MeekerM. A. (2012). Hospice decision making: Diagnosis makes a difference. The Gerontologist, 52, 686-697. doi:10.1093/geront/gnr160
71.
YunY. H.LeeM. K.ParkS.LeeJ. L.ParkJ.ChoiY. S.. . . HongY. S. (2011). Use of a decision aid to help caregivers discuss terminal disease status with a family member with cancer: A randomized controlled trial. Journal of Clinical Oncology, 29, 4811-4819.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
