Palliative care health professionals’ experiences of caring for patients with advance care directives
Claire E. Johnson A D , Rachel Singer A , Malcolm Masso B , Marcus Sellars C and William Silvester CA Cancer and Palliative Care Research and Evaluation Unit, School of Surgery, The University of Western Australia, M507, 35 Stirling Hwy, Crawley, WA 6009, Australia.
B Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, iC Enterprise 1, Innovation Campus, University of Wollongong, Wollongong, NSW 2522, Australia. Email: mmasso@uow.edu.au
C Respecting Patient Choices Program, Austin Hospital, PO Box 5555, Heidelberg, Vic. 3084, Australia. Email: marcus.sellars@austin.org.au, William.silvester@austin.org.au
D Corresponding author. Email: claire.johnson@uwa.edu.au
Australian Health Review 39(2) 154-159 https://doi.org/10.1071/AH14119
Submitted: 23 July 2014 Accepted: 10 November 2014 Published: 22 January 2015
Journal Compilation © AHHA 2015
Abstract
Objective To explore the health professionals’ (HPs) perceptions and experiences of advance care directives (ACDs) and advance care planning in Australian palliative care services.
Methods A nationwide survey of 105 palliative care services was conducted, with two HPs from each service invited to participate. A qualitative analysis of open responses about advance care planning was undertaken.
Results Sixty questionnaires were returned with open responses. Most responders were nurses (75%), aged ≥40 years (80%) and with a mean of 12 years palliative care experience. Data were grouped into four key themes: (1) the ACD; (2) the process of developing ACDs; (3) the process of using ACDs; and (4) the consequences of having ACDs. Participants were positive about advance care planning, commenting that ongoing communication about end-of-life care ensures mutual understanding between patients, family and HPs. Provision of care was considered easier and more efficient with an ACD in place. ACDs were perceived to reduce distrust and conflict between family, friends and HPs, and promote communication. Suboptimal documentation, clarity and explicitness limited the usefulness of ACDs when they were available.
Conclusions Advance care planning benefits HPs, patients and their family. To maximise these benefits, ACDs need to be clear, comprehensive, medically relevant and transportable documents.
What is known about the topic? Ideally, advance care planning encompasses the identification and documentation of a person’s preferences for future medical treatments and care in preparation for an occasion when the person cannot express their values and wishes. The uptake and practice of advance care planning is inconsistent, and the extent to which it is used by health professionals and patients is variable. Many people are cared for at the end of life in specialist palliative care services, but the intersection between palliative care and advance care planning remains under-researched.
What does this paper adds? ACDs facilitate communication and advance care planning; help establish trust between health professionals, patients and their families; and make multiple aspects of care easier for HPs. Processes surrounding ACDs, particularly inadequate documentation, limit adherence and application.
What are the implications for practitioners? Clear communication is necessary for effective ACD development and application. The presence of an ACD makes communication and advance care planning easier, and improves trust between HPs, patients and their family. To be useful, ACDs must be clear, comprehensive, medically relevant, transportable documents.
References
[1] NSW Health. Advance planning for quality care at end of life: action plan 2013–2018. Sydney: NSW Ministry of Health; 2013.[2] Briggs LA, Kirchhoff KT, Hammes BJ, Song M-K, Colvin ER. Patient-centered advance care planning in special patient populations: a pilot study. J Prof Nurs 2004; 20 47–58.
| Patient-centered advance care planning in special patient populations: a pilot study.Crossref | GoogleScholarGoogle Scholar | 15011193PubMed |
[3] Cantor MD, Pearlman RA. Advance care planning in long-term care facilities. J Am Med Dir Assoc 2003; 4 101–8.
| Advance care planning in long-term care facilities.Crossref | GoogleScholarGoogle Scholar | 12807583PubMed |
[4] 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=0ba7887745071eed31bdb602fda96824CAS | 8638992PubMed |
[5] Taylor DM, Cameron PA. Advance care planning in Australia: overdue for improvement. Int Med J 2002; 32 475–80.
| Advance care planning in Australia: overdue for improvement.Crossref | GoogleScholarGoogle Scholar |
[6] Sellars M, Silvester W, Masso M, Johnson C. Advance care planning in palliative care: a national survey of health professionals and service managers. Aust Health Rev 2014; in press.
| Advance care planning in palliative care: a national survey of health professionals and service managers.Crossref | GoogleScholarGoogle Scholar |
[7] Lovell A, Yates P. Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008–2012. Palliat Med 2014; 28 1026–35.
| Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008–2012.Crossref | GoogleScholarGoogle Scholar | 24821708PubMed |
[8] Palliative Care Outcomes Collaboration. Palliative Care Outcomes Collaboration. Three years of progress (2010 to 2013). Wollongong: Australian Health Services Research Institute; 2013.
[9] 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 |
[10] Pope C, Ziebland S, Mays N. Analysing qualitative data. BMJ 2000; 320 114–16.
| Analysing qualitative data.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3c%2FptVOgug%3D%3D&md5=963a33915e13087d8e825509f4cca55bCAS | 10625273PubMed |
[11] Elo S, Kyngas H. The qualitative content analysis process. J Adv Nurs 2008; 62 107–15.
| The qualitative content analysis process.Crossref | GoogleScholarGoogle Scholar | 18352969PubMed |
[12] Pope C, Ziebland S, Mays N. Analysing qualitative data. In: Pope C, editor. Qualitative research in health care. Oxford: Wiley-Blackwell; 2007. pp. 114–116.
[13] Tulsky JA. Beyond advance directives: Importance of communication skills at the end of life. J Am Med Assoc 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=eb31fd3c95aaae4019461b3b6492f55dCAS |
[14] Boddy J, Chenoweth L, McLennan V, Daly M. It’s just too hard! Australian health care practitioner perspectives on barriers to advance care planning. Aust J Primary Health 2013; 19 38–45.
| It’s just too hard! Australian health care practitioner perspectives on barriers to advance care planning.Crossref | GoogleScholarGoogle Scholar |
[15] Krumholz HM, Phillips RS, Hamel MB, Teno JM, Bellamy P, Broste SK, Califf RM, Vidaillet H, Davis RB, Muhlbaier LH, Connors AF. Krumholz HM, Phillips RS, Hamel MB, Teno JM, Bellamy P, Broste SK, Califf RM, Vidaillet H, Davis RB, Muhlbaier LH, Connors AF. Resuscitation preferences among patients with severe congestive heart failure: results from the SUPPORT project. Circulation 1998; 98 648–55.
| Resuscitation preferences among patients with severe congestive heart failure: results from the SUPPORT project.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK1cznvFOitg%3D%3D&md5=71a9d9b89e5f3801b6abbfcca93a3f1bCAS | 9715857PubMed |
[16] Ditto PH, Jacobson JA, Smucker WD, Danks JH, Fagerlin A. Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decision Making 2006; 26 313–22.
| Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences.Crossref | GoogleScholarGoogle Scholar |
[17] Pokorny AMJ. Advance care directives are not always helpful. Med J Aust 2014; 200 248
| Advance care directives are not always helpful.Crossref | GoogleScholarGoogle Scholar |
[18] Ramsaroop SD, Reid MC, Adelman RD. Completing an advance directive in the primary care setting: what do we need for success? J Am Geriatr Soc 2007; 55 277–83.
| Completing an advance directive in the primary care setting: what do we need for success?Crossref | GoogleScholarGoogle Scholar | 17302667PubMed |
[19] Hammes BJ, Rooney BL, Gundrum JDA. Comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. J Am Geriatr Soc 2010; 58 1249–55.
| Comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem.Crossref | GoogleScholarGoogle Scholar | 20649688PubMed |
[20] National E-Health Transition Authority. NEHTA eHealth Scorecard. 2013. Available at: http://www.nehta.gov.au/media-centre/news/445-nehta-ehealth-scorecard [verified 8 October 2014].
[21] 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.
| Uptake and implementation of advance care planning in Australia: findings of key informant interviews.Crossref | GoogleScholarGoogle Scholar | 22513028PubMed |
[22] Currow D, Allingham S, Bird S, Yates P, Lewis J, Dawber J, Eagar K. Referral patterns and proximity to palliative care inpatient services by level of socio-economic disadvantage. A national study using spatial analysis. BMC Health Serv Res 2012; 12 424
| Referral patterns and proximity to palliative care inpatient services by level of socio-economic disadvantage. A national study using spatial analysis.Crossref | GoogleScholarGoogle Scholar | 23176397PubMed |
[23] Berglund C. Beginning the quest. In: Berglund C, editor. Health research. Melbourne: Oxford University Press; 2001. pp. 1–14.
