Why Are Advance Care Planning Decisions Not Implemented? Insights from Interviews with Australian General Practitioners
Publication: Journal of Palliative Medicine
Volume 16, Issue Number 10
Abstract
Background: Advance care planning (ACP) is thought to enhance patient autonomy and improve end-of-life care. However, there is evidence that when patients engage in ACP, the resultant plans are often not implemented. This has been attributed to either nonadherence by health professionals or inadequacies in ACP such as inaccessibility of the plans, plans providing ambiguous or conflicting instructions, and inappropriate focus on the completion of documents rather than communication. However, it is not known whether these postulated reasons are consistent with the experiences and views of health care professionals providing end-of-life care in the community.
Objective: Our aim was to explore the perspectives of general practitioners (GPs) on factors influencing the implementation of ACPs.
Methods: We conducted semi-structured, open-ended interviews of a purposive sample of 17 Australian GPs. Interview transcripts were analysed using constructionist grounded theory utilizing NVivo 9 software.
Results: Factors that were considered to have an important influence on the implementation of ACPs include: ACP factors such as form, legal standing, accessibility, clarity, currency, and specificity; illness factors such as quality of life, function, diagnosis, prognosis, and prognostic certainty; family factors such as family attitudes to ACP and different conceptualizations on whether care is provided to individuals or to a family unit; and organizational and care setting factors such as health care facility's attitudes and policies in relation to end-of-life care.
Conclusions: Problems in implementation of ACPs are multifactorial and not necessarily due to deliberate nonadherence by health professionals. Potential solutions to improve the clinical impact of ACP are discussed.
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References
1.
Tulsky JA. Beyond advance directives: Importance of communication skills at the end of lifeJAMA2005294359-365. 1. Tulsky JA: Beyond advance directives: Importance of communication skills at the end of life. JAMA 2005;294:359–365.
2.
Cartwright CMParker MH. Advance care planning and end of life decision makingAust Fam Physician200433815-819. 2. Cartwright CM, Parker MH: Advance care planning and end of life decision making. Aust Fam Physician 2004;33:815–819.
3.
National Hospitals and Health Reform Commission. A Healthier Future For All Australians - Final Report of the National Health and Hospitals Reform CommissionJune2009Canberra2009. 3. National Hospitals and Health Reform Commission. A Healthier Future For All Australians - Final Report of the National Health and Hospitals Reform Commission, June 2009. Canberra, 2009.
4.
Kirsner S. Advance care planning and quality improvementAust J Primary Health Interchange20081489-95. 4. Kirsner S: Advance care planning and quality improvement. Aust J Primary Health Interchange 2008;14:89–95.
5.
Teno JMGruneir ASchwartz ZNanda AWetle T. Association between advance directives and quality of end-of-life care: A national studyJ Am Geriatr Soc200755189-194. 5. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T: Association between advance directives and quality of end-of-life care: A national study. J Am Geriatr Soc 2007;55:189–194.
6.
New South Wales Department of Health: Health NDo. Using Advance Care Directives (NSW)North SydneyNSW Department of Health2004. 6. New South Wales Department of Health: Health NDo. Using Advance Care Directives (NSW). North Sydney: NSW Department of Health, 2004.
7.
Goodman MDTarnoff MSlotman GJ. Effect of advance directives on the management of elderly critically ill patientsCrit Care Med199826701-704. 7. Goodman MD, Tarnoff M, Slotman GJ: Effect of advance directives on the management of elderly critically ill patients. Crit Care Med 1998;26:701–704.
8.
Teno JLicks SLynn J et al. Do advance directives provide instructions that direct care?J Am Geriatr Soc199745508-512. 8. Teno J, Licks S, Lynn J, et al.: Do advance directives provide instructions that direct care? J Am Geriatr Soc 1997;45:508–512.
9.
Ditto PHDanks JHSmucker WD et al. Advance directives as acts of communication: A randomized controlled trialArch Intern Med2001161421-430. 9. Ditto PH, Danks JH, Smucker WD, et al.: Advance directives as acts of communication: A randomized controlled trial. Arch Intern Med 2001;161:421–430.
10.
Dobbins EH. End-of-life decisions: Influence of advance directives on patient careJ Gerontol Nurs20073350-56. 10. Dobbins EH: End-of-life decisions: Influence of advance directives on patient care. J Gerontol Nurs 2007;33:50–56.
11.
Perkins HS. Perspective. Controlling death: The false promise of advance directivesAnnIntern Med200714751-7. 11. Perkins HS: Perspective. Controlling death: The false promise of advance directives. AnnIntern Med 2007;147:51–7.
12.
Detering KMHancock ADReade MCSilvester W. The impact of advance care planning on end of life care in elderly patients: Randomised controlled trialBMJ2010340c1345. 12. Detering KM, Hancock AD, Reade MC, Silvester W: The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ 2010;340:c1345.
13.
Rhodes PShaw S. Informal care and terminal illnessHealth Soc Care Community2002739-50. 13. Rhodes P, Shaw S: Informal care and terminal illness. Health Soc Care Community 2002;7:39–50.
14.
Johnson CMitchell GKThomas K. The potential for a structured approach to palliative and end of life care in the community in AustraliaAust Med J20103313-17. 14. Johnson C, Mitchell GK, Thomas K: The potential for a structured approach to palliative and end of life care in the community in Australia. Aust Med J 2010;3:313–17.
15.
Mitchell GK. The Australian draft National Palliative Care Strategy: Is primary palliative care at crossroads?Aust Med J20103307-309. 15. Mitchell GK: The Australian draft National Palliative Care Strategy: Is primary palliative care at crossroads? Aust Med J 2010;3:307–309.
16.
Charmaz KConstructing Grounded TheoryA Practical Guide through Qualitative AnalysisLondonSage2006. 16. Charmaz K: Constructing Grounded Theory. A Practical Guide through Qualitative Analysis. London: Sage, 2006.
17.
Corbin JStrauss ABasics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory3rdThousand OaksSage2008. 17. Corbin J, Strauss A: Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 3rd ed. Thousand Oaks: Sage, 2008.
18.
Clarke ASituational Analysis. Grounded Theory After the Postmodern TurnThousand OaksSage2005. 18. Clarke A: Situational Analysis. Grounded Theory After the Postmodern Turn. Thousand Oaks: Sage, 2005.
19.
Clarke A. From grounded theory to situational analysis: What's new? Why? How?Morse JDeveloping Grounded Theory: The Second GenerationWalnut CreekLeft Coast Press2009. 19. Clarke A: From grounded theory to situational analysis: What's new? Why? How? In: Morse J (ed): Developing Grounded Theory: The Second Generation. Walnut Creek: Left Coast Press, 2009.
20.
Charmaz K. Shifting the grounds: Constructivist grounded theory methodsMorse JDeveloping Grounded Theory: The Second GenerationWalnut CreekLeft Coast Press2009. 20. Charmaz K: Shifting the grounds: Constructivist grounded theory methods. In: Morse J (ed): Developing Grounded Theory: The Second Generation. Walnut Creek: Left Coast Press, 2009.
21.
Rhee JJZwar NAKemp LA. Advance care planning and interpersonal relationships: a two-way streetFamily Practice201330219-226. 21. Rhee JJ, Zwar NA, Kemp LA: Advance care planning and interpersonal relationships: a two-way street. Family Practice 2013;30:219–226.
22.
Perkins HS. Controlling death: The false promise of advance directivesAnn Inter Med200714751-57. 22. Perkins HS: Controlling death: The false promise of advance directives. Ann Inter Med 2007;147:51–57.
23.
Rhee JJZwar NAKemp LA. Uptake and implementation of Advance Care Planning in Australia: Findings of key informant interviewsAust Health Rev20123698-104. 23. Rhee JJ, Zwar NA, Kemp LA: Uptake and implementation of Advance Care Planning in Australia: Findings of key informant interviews. Aust Health Rev 2012;36:98–104.
24.
Murphy BF. What has happened to clinical leadership in futile care discussions?Med J Aust2008188418. 24. Murphy BF: What has happened to clinical leadership in futile care discussions? Med J Aust 2008;188:418.
25.
Luce JM. End-of-life decision making in the intensive care unitAm J Respir Crit Care Med20101826-11. 25. Luce JM: End-of-life decision making in the intensive care unit. Am J Respir Crit Care Med 2010;182:6–11.
26.
Chan HM. Sharing death and dying: Advance directives, autonomy and the familyBioethics20041887-103. 26. Chan HM: Sharing death and dying: Advance directives, autonomy and the family. Bioethics 2004;18:87–103.
27.
Johnstone M-JKanitsaki O. Ethics and advance care planning in a culturally diverse societyJ Transcultural Nurs200920405-416. 27. Johnstone M-J, Kanitsaki O: Ethics and advance care planning in a culturally diverse society. J Transcultural Nurs 2009;20:405–416.
28.
Candib LM. Truth telling and advance planning at the end of life: Problems with autonomy in a multicultural worldFam Systems Health200220213. 28. Candib LM: Truth telling and advance planning at the end of life: Problems with autonomy in a multicultural world. Fam Systems Health 2002;20:213.
29.
Segaric CAHall WA. The family theory–practice gap: A matter of clarity?Nurs Inquiry200512210-218. 29. Segaric CA, Hall WA: The family theory–practice gap: A matter of clarity? Nurs Inquiry 2005;12:210–218.
30.
Hudson PLAranda SKristjanson LJ. Meeting the supportive needs of family caregivers in palliative care: Challenges for health professionalsJ Palliat Med2004719-25. 30. Hudson PL, Aranda S, Kristjanson LJ: Meeting the supportive needs of family caregivers in palliative care: Challenges for health professionals. J Palliat Med 2004;7:19–25.
31.
Proot IMAbu‐Saad HHCrebolder HFJMGoldsteen MLuker KAWiddershoven GAM. Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacityScand J Caring Sci200317113-121. 31. Proot IM, Abu‐Saad HH, Crebolder HFJM, Goldsteen M, Luker KA, Widdershoven GAM: Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scand J Caring Sci 2003;17:113–121.
32.
Rothschild A. Capacity and medical self-determination in AustraliaJ Law Med200714403-424. 32. Rothschild A: Capacity and medical self-determination in Australia. J Law Med 2007;14:403–424.
33.
Nolan MTKub JHughes MT et al. Family health care decision making and self-efficacy with patients with ALS at the end of lifePalliat Support Care20086273-280. 33. Nolan MT, Kub J, Hughes MT, et al.: Family health care decision making and self-efficacy with patients with ALS at the end of life. Palliat Support Care 2008;6:273–280.
34.
Meeker MAJezewski MA. Family decision making at end of lifePalliat Support Care20053131-142. 34. Meeker MA, Jezewski MA: Family decision making at end of life. Palliat Support Care 2005;3:131–142.
35.
Terry PBVettese MSong J et al. End-of-life decision making: When patients and surrogates disagreeJ Clin Ethics199910286-293. 35. Terry PB, Vettese M, Song J, et al.: End-of-life decision making: When patients and surrogates disagree. J Clin Ethics 1999;10:286–293.
36.
Puchalski CMZhong ZJacobs MM et al. Patients who want their family and physician to make resuscitation decisions for them: Observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal ProjectJ Am Geriatr Soc200048S84-S90. 36. Puchalski CM, Zhong Z, Jacobs MM, et al.: Patients who want their family and physician to make resuscitation decisions for them: Observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc 2000;48:S84–S90.
37.
Fins JJMaltby BSFriedmann E et al. Contracts, covenants and advance care planning: An empirical study of the moral obligations of patient and proxyJ Pain Sympt Manage20052955-68. 37. Fins JJ, Maltby BS, Friedmann E, et al.: Contracts, covenants and advance care planning: An empirical study of the moral obligations of patient and proxy. J Pain Sympt Manage 2005;29:55–68.
38.
Kim SHKjervik D. Deferred decision making: patients' reliance on family and physicians for CPR decisions in critical careNurs Ethics200512493-506. 38. Kim SH, Kjervik D: Deferred decision making: patients' reliance on family and physicians for CPR decisions in critical care. Nurs Ethics 2005;12:493–506.
39.
Hawkins NADitto PHDanks JHSmucker WD. Micromanaging death: Process preferences, values, and goals in end-of-life medical decision makingGerontologist200545107-117. 39. Hawkins NA, Ditto PH, Danks JH, Smucker WD: Micromanaging death: Process preferences, values, and goals in end-of-life medical decision making. Gerontologist 2005;45:107–117.
40.
Fagerlin ASchneider CE. Enough. The failure of the living willHastings Center Rep20043430-42. 40. Fagerlin A, Schneider CE: Enough. The failure of the living will. Hastings Center Rep 2004;34:30–42.
41.
Murray SAKendall MBoyd KSheikh A. Illness trajectories and palliative careBMJ20053301007. 41. Murray SA, Kendall M, Boyd K, Sheikh A: Illness trajectories and palliative care. BMJ 2005;330:1007.
42.
Lynn J. Serving patients who may die soon and their familiesJAMA2001285925-932. 42. Lynn J: Serving patients who may die soon and their families. JAMA 2001;285:925–932.
Information & Authors
Information
Published In
Journal of Palliative Medicine
Volume 16 • Issue Number 10 • October 2013
Pages: 1197 - 1204
PubMed: 23964638
Copyright
Copyright 2013, Mary Ann Liebert, Inc.
History
Published online: 7 October 2013
Published in print: October 2013
Published ahead of print: 21 August 2013
Accepted: 14 May 2013
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No competing financial interests exist.
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