How is advance care planning conceptualised in Australia? Findings from key informant interviews
Joel J. Rhee A D , Nicholas A. Zwar B and Lynn A. Kemp CA Centre for Primary Health Care and Equity, School of Public Health and Community Medicine, University of New South Wales, AGSM Building, Sydney, NSW 2052, Australia.
B Centre for Primary Health Care and Equity, School of Public Health and Community Medicine, University of New South Wales, Level 3, Samuels Building, Sydney, NSW 2052, Australia. Email: n.zwar@unsw.edu.au
C Centre for Health Care Equity Training Research and Evaluation (CHETRE), Centre for Primary Health Care and Equity (CPHCE), School of Public Health and Community Medicine, University of New South Wales, CHETRE Liverpool (Main Office), Locked Bag 7103, Liverpool BC, NSW 1871, Australia. Email: l.kemp@unsw.edu.au
D Corresponding author. Email: j.rhee@unsw.edu.au
Australian Health Review 35(2) 197-203 https://doi.org/10.1071/AH10883
Submitted: 12 February 2010 Accepted: 19 October 2010 Published: 25 May 2011
Abstract
Objective. Advance Care Planning (ACP) has been gaining prominence as an important component of good end-of-life care. This study explored how ACP is conceptualised by stakeholder organisations and clinicians involved in aged care and end-of-life care in Australia, in particular their views on the aim, appropriate context and settings for ACP, and how ACP should be facilitated.
Participants. Twenty-three participants including expert clinicians and representatives of government organisations, professional societies, consumer groups and other organisations involved in aged care and end-of-life care.
Design. Qualitative descriptive analysis of semi-structured telephone interviews.
Results. Most participants viewed ACP as an ongoing process aimed at enhancing an individual’s autonomy and ensuring good end-of-life care. However, there were significant differences in how this process was conceptualised. Some viewed ACP as a process undertaken by patients to define and communicate their treatment preferences. Others viewed ACP as discussions undertaken by health professionals to gain a better understanding of the patient’s values and goals in order to provide good care.
Implications. Our findings highlight significant differences in how ACP is conceptualised in Australia. A shared conceptualisation and agreement on purpose is needed to ensure a successful implementation of ACP in Australia.
What is known about the topic? Advance care planning (ACP) has been gaining increasing prominence both internationally and in Australia and is seen as an important component of good end-of-life care. Originally conceptualised as a document outlining a patient’s specific treatment preferences about life-sustaining treatments, ACP has been increasingly recognised in the literature as an ongoing process of discussion, communication and documentation of the patient’s wishes and values regarding end-of-life care.
What does this paper add? This paper shows that most expert clinicians and representatives of key stakeholder organisations view ACP as a process that aims to enhance individual autonomy and ensure good end-of-life care. However, our findings show that they often hold contrasting views on ACP – ranging from a consumer-orientated view that sees ACP as undertaken to define and communicate their care preferences; to a care-orientated view that sees ACP as discussions led by health professionals in order to gain an understanding of patients’ values and wishes in order to provide better care.
What are the implications for practitioners? Our findings highlight significant differences in how ACP is conceptualised in Australia. This can cause confusion and conflict, leading to reduced effectiveness of ACP. A shared conceptualisation and agreement on purpose is needed to ensure a successful implementation of ACP in Australia.
References
[1] Pearlman RA, Cole WG, Patrick DL, Starks HE, Cain KC. Advance care planning: eliciting patient preferences for life-sustaining treatment. Patient Educ Couns 1995; 26 353–61.| Advance care planning: eliciting patient preferences for life-sustaining treatment.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK28%2FjslGjuw%3D%3D&md5=aec5783e6fde4145cd6a2905d645a3c6CAS | 7494750PubMed |
[2] Cartwright CM, Parker MH. Advance care planning and end of life decision making. Aust Fam Physician 2004; 33 815–9.
| 15532156PubMed |
[3] Tulsky JA. Beyond advance directives: importance of communication skills at the end of life. JAMA 2005; 294 359–65.
| Beyond advance directives: importance of communication skills at the end of life.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DC%2BD2MXmtlGks7Y%3D&md5=fd7835a1c8be82248b94dac70960769eCAS | 16030281PubMed |
[4] Kutner L. Due process of euthanasia: the living will, a proposal. Indiana Law J 1969; 44 539–54.
[5] Taking care: ethical caregiving in our aging society. Washington, DC: The President’s Council on Bioethics; 2005.
[6] Miles SH, Koepp R, Weber EP. Advance end-of-life treatment planning. A research review. Arch Intern Med 1996; 156 1062–8.
| Advance end-of-life treatment planning. A research review.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK283isVyjsA%3D%3D&md5=f238f3d85a39d4ff02c837eba14b490eCAS | 8638992PubMed |
[7] Singer PA, Martin DK, Lavery JV, Thiel EC, Kelner M, Mendelssohn DC. Reconceptualizing advance care planning from the patient’s perspective. Arch Intern Med 1998; 158 879–84.
| Reconceptualizing advance care planning from the patient’s perspective.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK1c3jtVSquw%3D%3D&md5=9f9398c47e18cddef1a21779a174e9e4CAS | 9570174PubMed |
[8] Goodman MD, Tarnoff M, Slotman GJ. Effect of advance directives on the management of elderly critically ill patients. Crit Care Med 1998; 26 701–4.
| Effect of advance directives on the management of elderly critically ill patients.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK1c3hvVGjuw%3D%3D&md5=0bd9ae1d91e432eae35cf4fe6415e439CAS | 9559607PubMed |
[9] Hammes BJ, Rooney BL. Death and end-of-life planning in one midwestern community. Arch Intern Med 1998; 158 383–90.
| Death and end-of-life planning in one midwestern community.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK1c7kvVaitA%3D%3D&md5=8f4b88993481ffd56609def53e6d4cadCAS | 9487236PubMed |
[10] Thorevska N, Tilluckdharry L, Tickoo S, Havasi A, Amoateng-Adjepong Y, Manthous CA. Patients’ understanding of advance directives and cardiopulmonary resuscitation. J Crit Care 2005; 20 26–34.
| Patients’ understanding of advance directives and cardiopulmonary resuscitation.Crossref | GoogleScholarGoogle Scholar | 16015514PubMed |
[11] Gready RM, Ditto PH, Danks JH, Coppola KM, Lockhart LK, Smucker WD. Actual and perceived stability of preferences for life-sustaining treatment. J Clin Ethics 2000; 11 334–46.
| 1:STN:280:DC%2BD3Mzitlehtg%3D%3D&md5=f38b2c1317577a29ddfcd27b710b5076CAS | 11252917PubMed |
[12] Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Cent Rep 2004; 34 30–42.
| Enough. The failure of the living will.Crossref | GoogleScholarGoogle Scholar | 15156835PubMed |
[13] Sharman SJ, Garry M, Jacobsen JA, Loftus EF, Ditto PH. False memories for end-of-life decisions. Health Psychol 2008; 27 291–6.
| False memories for end-of-life decisions.Crossref | GoogleScholarGoogle Scholar | 18377150PubMed |
[14] Porensky EK, Carpenter BD. Knowledge and perceptions in advance care planning. J Aging Health 2008; 20 89–106.
| Knowledge and perceptions in advance care planning.Crossref | GoogleScholarGoogle Scholar | 18252936PubMed |
[15] Danis M, Southerland LI, Garrett JM, Smith JL, Hielema F, Pickard CG, Egner DM, Patrick DL. A prospective study of advance directives for life-sustaining care. N Engl J Med 1991; 324 882–8.
| A prospective study of advance directives for life-sustaining care.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK3M7lsF2qsw%3D%3D&md5=17f9af3ec6b2081beb2905ef0821dbc4CAS | 2000110PubMed |
[16] Teno JM, Licks S, Lynn J, Wenger N, Connors AF, Phillips RS, O’Connor MA, Murphy DP, Fulkerson WJ, Desbiens N, Knaus WA. Do advance directives provide instructions that direct care? J Am Geriatr Soc 1997; 45 508–12.
| 1:STN:280:DyaK2s3lsFektw%3D%3D&md5=81cbf3b725ffd78ffcd563c31e3a5a53CAS | 9100722PubMed |
[17] Ditto PH, Danks JH, Smucker WD, Bookwala J, Coppola KM, Dresser R, Fagerlin A, Gready RM, Houts RM, Lockhart LK, Zyzanski S. Advance directives as acts of communication: a randomized controlled trial. Arch Intern Med 2001; 161 421–30.
| Advance directives as acts of communication: a randomized controlled trial.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3M7otVWitQ%3D%3D&md5=4893f71b322be006a92fe3d44030bd9cCAS | 11176768PubMed |
[18] Dobbins EH. End-of-life decisions: influence of advance directives on patient care. J Gerontol Nurs 2007; 33 50–6.
| 17955738PubMed |
[19] Teno JM. Advance directives: time to move on. Ann Intern Med 2004; 141 159–60.
| 15262674PubMed |
[20] Teno JM, Stevens M, Spernak S, Lynn J. Role of written advance directives in decision making: insights from qualitative and quantitative data. J Gen Intern Med 1998; 13 439–46.
| Role of written advance directives in decision making: insights from qualitative and quantitative data.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK1czkvFCqug%3D%3D&md5=1bca5a88befa92204c2afcc4540fd28eCAS | 9686709PubMed |
[21] Gallagher R. An approach to advance care planning in the office. Can Fam Physician 2006; 52 459–64.
| 16639971PubMed |
[22] 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
| The impact of advance care planning on end of life care in elderly patients: randomised controlled trial.Crossref | GoogleScholarGoogle Scholar | 20332506PubMed |
[23] Marchand L, Fowler KJ, Kokanovic O, Marchand L, Fowler KJ, Kokanovic O. Building successful coalitions for promoting advance care planning. Am J Hosp Palliat Care 2006; 23 119–26.
| Building successful coalitions for promoting advance care planning.Crossref | GoogleScholarGoogle Scholar | 16572750PubMed |
[24] Sehgal A, Galbraith A, Chesney M, Schoenfeld P, Charles G, Lo B. How strictly do dialysis patients want their advance directives followed? JAMA 1992; 267 59–63.
| How strictly do dialysis patients want their advance directives followed?Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK38%2FnvFeksw%3D%3D&md5=69eb1067b571864137d12aff8700dccfCAS | 1489360PubMed |
[25] Terry PB, Vettese M, Song J, Forman J, Haller KB, Miller DJ, Stallings R, Sulmasy DP. End-of-life decision making: when patients and surrogates disagree. J Clin Ethics 1999; 10 286–93.
| 1:STN:280:DC%2BD3c3ltFyktg%3D%3D&md5=33afc1495f8a23f3a036c280e762e588CAS | 10791278PubMed |
[26] Puchalski CM, Zhong Z, Jacobs MM, Fox E, Lynn J, Harrold J, Galanos A, Phillips RS, Califf R, Teno JM. Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP. J Am Geriatr Soc 2000; 48 S84–90.
| 1:STN:280:DC%2BD3c3mslCmug%3D%3D&md5=7ac1a2578d268b4d808bc6baf4dacac5CAS | 10809461PubMed |
[27] Fins JJ, Maltby BS, Friedmann E, Greene MG, Norris K, Adelman R, Byock I. Contracts, covenants and advance care planning: an empirical study of the moral obligations of patient and proxy. J Pain Symptom Manage 2005; 29 55–68.
| Contracts, covenants and advance care planning: an empirical study of the moral obligations of patient and proxy.Crossref | GoogleScholarGoogle Scholar | 15652439PubMed |
[28] 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.
| Deferred decision making: patients’ reliance on family and physicians for CPR decisions in critical care.Crossref | GoogleScholarGoogle Scholar | 16178345PubMed |
[29] High DM. Why are elderly people not using advance directives? J Aging Health 1993; 5 497–515.
| Why are elderly people not using advance directives?Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK2c%2FjtVGltA%3D%3D&md5=9be087cdd6156bb504ba9605330ede4aCAS | 10129468PubMed |
[30] Seymour J, Gott M, Bellamy G, Ahmedzai SH, Clark D. Planning for the end of life: the views of older people about advance care statements. Soc Sci Med 2004; 59 57–68.
| Planning for the end of life: the views of older people about advance care statements.Crossref | GoogleScholarGoogle Scholar | 15087143PubMed |
[31] Thompson TDB, Barbour RS, Schwartz L. Health professionals’ views on advance directives: a qualitative interdisciplinary study. Palliat Med 2003; 17 403–9.
| Health professionals’ views on advance directives: a qualitative interdisciplinary study.Crossref | GoogleScholarGoogle Scholar | 12882258PubMed |
[32] Kolarik RC, Arnold RM, Fischer GS, Tulsky JA. Objectives for advance care planning. J Palliat Med 2002; 5 697–704.
| Objectives for advance care planning.Crossref | GoogleScholarGoogle Scholar | 12572968PubMed |
[33] Nair B, Kerridge I, Dobson A, McPhee J, Saul P. Advance care planning in residential care. Aust N Z J Med 2000; 30 339–43.
| Advance care planning in residential care.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3M%2FisFSrtQ%3D%3D&md5=da829445bcd2984c95f16cd30a1a9e39CAS | 10914751PubMed |
[34] Squires B, Barr F. The development of advance care directives in New South Wales. Australas J Ageing 2005; 24 S30–5.
| The development of advance care directives in New South Wales.Crossref | GoogleScholarGoogle Scholar |
[35] Brown M, Grbich C, Maddocks I, Parker D, Connellan PR, Willis E. Documenting end of life decisions in residential aged care facilities in South Australia. Aust N Z J Public Health 2005; 29 85–90.
| Documenting end of life decisions in residential aged care facilities in South Australia.Crossref | GoogleScholarGoogle Scholar | 15782878PubMed |
[36] Zib M, Saul P. A pilot audit of the process of end-of-life decision-making in the intensive care unit. Crit Care Resusc 2007; 9 213–8.
| 17536994PubMed |
[37] Lee M-J, Heland M, Romios P, Naksook C, Silvester W. Respecting patient choices: advance care planning to improve patient care at Austin Health. Health Issues 2003; 77 23–6.
[38] A Healthier Future For All Australians – Final Report of the National Health and Hospitals Reform Commission – June 2009. Canberra: National Hospitals and Health Reform Commission; 2009.
[39] Hunter and New England Area Health Service v A by his tutor T. In: NSWLR, 88. NSWSC; 2009.
[40] Brown M. The law and practice associated with advance directives in Canada and Australia: similarities, differences and debates. J Law Med 2003; 11 59–76.
| 14526727PubMed |
[41] Grbich C. Qualitative data analysis: an introduction. London: Sage; 2007.
[42] Sandelowski M. Whatever happened to qualitative description? Res Nurs Health 2000; 23 334–40.
| Whatever happened to qualitative description?Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3cvhsFCmtw%3D%3D&md5=7a5bca9650d9f8432be12345907e4f56CAS | 10940958PubMed |
[43] Kutner L. Euthanasia: due process for death with dignity; the living will. Indiana Law J 1979; 54 201–28.
| 11664995PubMed |
