Register      Login
Australian Journal of Primary Health Australian Journal of Primary Health Society
The issues influencing community health services and primary health care
RESEARCH ARTICLE

It’s just too hard! Australian health care practitioner perspectives on barriers to advance care planning

Jennifer Boddy A B D , Lesley Chenoweth A B , Vanette McLennan A B and Michelle Daly A C
+ Author Affiliations
- Author Affiliations

A School of Human Services and Social Work, Griffith University, Parklands Drive, Southport, Qld 4222, Australia.

B Population and Social Health Research Program, Griffith Health Institute, Parklands Drive, Southport, Qld 4222, Australia.

C Queensland Health, Gold Coast Health Service District, 108 Nerang Street, Southport, Qld 4215, Australia.

D Corresponding author. Email: j.boddy@griffith.edu.au

Australian Journal of Primary Health 19(1) 38-45 https://doi.org/10.1071/PY11070
Submitted: 7 July 2011  Accepted: 6 December 2011   Published: 10 January 2012

Abstract

This article presents findings from six focus groups with health care practitioners in an Australian hospital during 2010, which sought to elicit their perspectives on the barriers for people to plan their future health care should they become unwell. Such knowledge is invaluable in overcoming the barriers associated with advance care planning and enhancing the uptake of advance directives and the appointment of an enduring power of attorney for people of all ages. A person’s rights to self-determination in health care, including decision making about their wishes for future care in the event they lose cognitive capacity, should not be overlooked against the backdrop of increasing pressure on health care systems. Findings suggest that multiple barriers exist, from practitioners’ perspectives, which can be divided into three major categories, namely: patient-centred, practitioner-centred and system-centred barriers. Specifically, patient-centred barriers include lack of knowledge, accessibility concerns, the small ‘window of opportunity’ to discuss advance care planning, emotional reactions and avoidance when considering one’s mortality, and demographic influences. At the practitioner level, barriers relate to a lack of knowledge and uncertainty around advance care planning processes. Systemically, legislative barriers (including a lack of a central registry and conflicting state legislation), procedural issues (particularly in relation to assessing cognitive capacity and making decisions ad hoc) and questions about delegation, roles and responsibilities further compound the barriers to advance care planning.

Additional keywords: advance directive, aging, enduring power of attorney, focus groups.


References

Bergman-Evans B, Kuhnel L, Myers S (2008) Uncovering beliefs and barriers: staff attitudes related to advance directives. American Journal of Hospice and Palliative Medicine 25, 347–353.
Uncovering beliefs and barriers: staff attitudes related to advance directives.Crossref | GoogleScholarGoogle Scholar | 18812620PubMed |

Black K (2007) Health care professionals’ death attitudes, experiences, and advance directive communication behavior. Death Studies 31, 563–572.
Health care professionals’ death attitudes, experiences, and advance directive communication behavior.Crossref | GoogleScholarGoogle Scholar | 17726830PubMed |

Brown M, Jarrad S (2008) Putting the powers in place: barriers for people with memory loss in planning for the future. Journal of Law and Medicine 15, 530–537.

Brown M, Grbich C, Maddocks I, Parker D, Roe P, Willis E (2005) Documenting end of life decisions in residential aged care facilities in South Australia. Australian and New Zealand Journal of Public Health 29, 85–90.
Documenting end of life decisions in residential aged care facilities in South Australia.Crossref | GoogleScholarGoogle Scholar | 15782878PubMed |

Cartwright CM (2000) End-of-life decision making: practical and ethical issues for health professionals. Australasian Journal on Ageing 19, 57–62.
End-of-life decision making: practical and ethical issues for health professionals.Crossref | GoogleScholarGoogle Scholar |

Cartwright CM (2007) Advance care planning in Australia: challenges of a federal legislative system. Progress in Palliative Care 15, 113–117.
Advance care planning in Australia: challenges of a federal legislative system.Crossref | GoogleScholarGoogle Scholar |

Cartwright CM, Parker MH (2004) Advance care planning and end of life decision making. Australian Family Physician 33, 815–819.

Curtis JR, Patrick DL, Caldwell ES, Collier AC (2000) Why don’t patients and physicians talk about end-of-life care? Archives of Internal Medicine 160, 1690–1696.
Why don’t patients and physicians talk about end-of-life care?Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3czgtlyktA%3D%3D&md5=2f9e65cdb6d1c27175314dbccb3826d6CAS | 10847263PubMed |

Denzin NK, Lincoln YS (2000) ‘Handbook of qualitative research.’ 2nd edn. (Sage Publications: Thousand Oaks, CA).

Fried TR, Bullock K, Iannone L, O’Leary JR (2009) Understanding advance care planning as a process of health behaviour change. Journal of the American Geriatrics Society 57, 1547–1555.
Understanding advance care planning as a process of health behaviour change.Crossref | GoogleScholarGoogle Scholar | 19682120PubMed |

Golden AG, Corvea MH, Dang S, Llorente M, Silverman MA (2009) Assessing advance directives in the homebound elderly. American Journal of Hospice & Palliative Medicine 26, 13–17.
Assessing advance directives in the homebound elderly.Crossref | GoogleScholarGoogle Scholar |

Goldsmith J, Wittenberg-Lyles E, Rodriguez D, Sanchez-Reilly S (2010) Interdisciplinary geriatric and palliative care team narratives: collaboration practices and barriers. Qualitative Health Research 20, 93–104.
Interdisciplinary geriatric and palliative care team narratives: collaboration practices and barriers.Crossref | GoogleScholarGoogle Scholar | 20019350PubMed |

Gott M, Gardiner C, Small N, Payne S, Seamark D, Barnes S, Halpin D, Ruse C (2009) Barriers to advance care planning in chronic obstructive pulmonary disease. Palliative Medicine 23, 642–648.
Barriers to advance care planning in chronic obstructive pulmonary disease.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD1MjhsFSluw%3D%3D&md5=1b886ac10ef5959c19833f99b6f13987CAS | 19648222PubMed |

Hamel CF, Guse LW, Hawranik PG, Bond JB (2002) Advance directives and community dwelling older adults. Western Journal of Nursing Research 24, 143–158.

High DM (1993) Advance directives and the elderly: a study of intervention strategies to increase use. The Gerontologist 33, 342–349.
Advance directives and the elderly: a study of intervention strategies to increase use.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK3szhsV2qsA%3D%3D&md5=e03861e33ef7b7170d83ddf0ead502a7CAS | 8325521PubMed |

Inman L (2002) Advance directives: Why community-based older adults do not discuss their wishes. Journal of Gerontological Nursing 28, 40–46.

Jackson JM, Rolnick S, Asche S, Heinrich R (2009) Knowledge, attitudes and preferences regarding advance directives among patients of a managed care organisation. The American Journal of Managed Care 15, 177–186.

Kenyon L, Gordon F (2009) Community engagement: from a professional to a public perspective. Community Practitioner 82, 22–25.

Liberati A (1997) Consumer participation in research and health care. British Medical Journal 315, 499
Consumer participation in research and health care.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK2svmvFyrsg%3D%3D&md5=ac27a4ecc66e8d6279d8b5345f2acd4fCAS | 9329297PubMed |

Mitchell G, Nicholson C, McDonald K, Bucetti A (2011) Enhancing palliative care in rural Australia: the residential aged care setting. Australian Journal of Primary Health 17, 95–101.
Enhancing palliative care in rural Australia: the residential aged care setting.Crossref | GoogleScholarGoogle Scholar | 21616032PubMed |

Murie J, Douglas-Scott G (2004) Developing an evidence base for patient and public involvement. Clinical Governance: An International Journal 9, 147–154.
Developing an evidence base for patient and public involvement.Crossref | GoogleScholarGoogle Scholar |

O’Malley AJ, Caudry DJ, Grabowski DC (2011) Predictors to nursing home residents’ time to hospitalization. Health Services Research 46, 82–104.
Predictors to nursing home residents’ time to hospitalization.Crossref | GoogleScholarGoogle Scholar | 20849556PubMed |

Pockett R, Walker E, Kashmira D (2010) ‘Last Orders’: dying in a hospital setting. Australian Social Work 63, 250–265.
‘Last Orders’: dying in a hospital setting.Crossref | GoogleScholarGoogle Scholar |

Porensky EK, Carpenter BD (2008) Knowledge and perceptions in advance care planning. Journal of Aging and Health 20, 89–106.
Knowledge and perceptions in advance care planning.Crossref | GoogleScholarGoogle Scholar | 18252936PubMed |

Putman-Casdorph H, Drenning C, Richards S, Messenger K (2009) Advance directives: evaluation of nurses’ knowledge, attitude, confidence, and experience. Journal of Nursing Care Quality 24, 250–256.
Advance directives: evaluation of nurses’ knowledge, attitude, confidence, and experience.Crossref | GoogleScholarGoogle Scholar | 19525766PubMed |

Sahm S, Will R, Hommel G (2005) Attitudes towards and barriers to writing advance directives amongst cancer patients, healthy controls, and medical staff. Journal of Medical Ethics 31, 437–440.
Attitudes towards and barriers to writing advance directives amongst cancer patients, healthy controls, and medical staff.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD2Mvhtlaktg%3D%3D&md5=ebc069d02372ae4932a091c3762d6559CAS | 16076965PubMed |

Seal M (2010) Health advance directives, policy and clinical practice: a perspective on the synergy of an effective advance care planning framework. Australian Health Review 34, 80–88.
Health advance directives, policy and clinical practice: a perspective on the synergy of an effective advance care planning framework.Crossref | GoogleScholarGoogle Scholar | 20334762PubMed |

Setterlund D, Tilse C, Wilson J (2002) Older people and substitute decision making legislation: limits to informed consent. Australasian Journal on Ageing 21, 128–134.
Older people and substitute decision making legislation: limits to informed consent.Crossref | GoogleScholarGoogle Scholar |

Seymour J, Gott M, Bellamy G, Ahmedzai SH, Clark D (2004) Planning for the end of life: the views of older people about advance care statements. Social Science & Medicine 59, 57–68.
Planning for the end of life: the views of older people about advance care statements.Crossref | GoogleScholarGoogle Scholar |

Seymour J, Almack K, Kennedy S (2010) Implementing advance care planning: a qualitative study of community nurses’ views and experiences. BMC Palliative Care 9, 4–13.

Simon J, Murray A, Raffin S (2008) Facilitated advance care planning: what is the patient experience? Journal of Palliative Care 24, 256–264.

Squires B, Barr F (2005) The development of advance care directives in New South Wales. Australasian Journal on Ageing 24, S30–S35.
The development of advance care directives in New South Wales.Crossref | GoogleScholarGoogle Scholar |

Stewart C (2005) The Australian experience of advance directives and possible future directions. Australasian Journal on Ageing 24, S25–S29.
The Australian experience of advance directives and possible future directions.Crossref | GoogleScholarGoogle Scholar |

Sudore RL, Schickedanz AD, Landefeld CS, Williams BA, Lindquist K, Pantilat SZ, Schillinger D (2008) Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults. Journal of the American Geriatrics Society 56, 1006–1013.
Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults.Crossref | GoogleScholarGoogle Scholar | 18410324PubMed |

Tilse C, Wilson J, Setterlund D (2003) The mismanagement of the assets of older people: the concerns and actions of aged care practitioners in Queensland. Australasian Journal on Ageing 22, 9–14.
The mismanagement of the assets of older people: the concerns and actions of aged care practitioners in Queensland.Crossref | GoogleScholarGoogle Scholar |

Tilse C, Wilson J, Setterlund D, Rosenman L (2005) Older people’s assets: a contested site. Australasian Journal on Ageing 24, S51–S56.
Older people’s assets: a contested site.Crossref | GoogleScholarGoogle Scholar |

Wilson J, Setterlund D, Tilse C (2003) ‘I know I signed something’: older people, families and social workers’ understanding of the legal aspects of entry to residential care. Australian Social Work 56, 155–165.
‘I know I signed something’: older people, families and social workers’ understanding of the legal aspects of entry to residential care.Crossref | GoogleScholarGoogle Scholar |