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General practice palliative care: patient and carer expectations, advance care plans and place of death—a systematic review
  1. Claire E Johnson1,2,3,
  2. Peta McVey4,
  3. Joel Jin-On Rhee5,
  4. Hugh Senior6,7,
  5. Leanne Monterosso8,9,10,
  6. Briony Williams11,12,
  7. Julia Fallon-Ferguson11,12,
  8. Matthew Grant13,
  9. Harriet Nwachukwu6,
  10. Michèle Aubin14,
  11. Patsy Yates15 and
  12. Geoffrey Mitchell6
  1. 1 Medical School, The University of Western Australia, Perth, Western Australia, Australia
  2. 2 School of Nursing & Midwifery, Monash University, Melbourne, Victoria, Australia
  3. 3 Eastern Health, Melbourne, Victoria, Australia
  4. 4 Sydney Nursing School, University of Sydney, Sydney, New South Wales, Australia
  5. 5 General Practice Academic Unit, School of Medicine, University of Wollongong, Wollongong, New South Wales, Australia
  6. 6 Primary Care Clinical Unit, Faculty of Medicine, University of Queensland, Brisbane, Queensland, Australia
  7. 7 College of Health, Massey University, Auckland, New Zealand
  8. 8 School of Nursing & Midwifery, Notre Dame University, Fremantle, Western Australia, Australia
  9. 9 Centre for Nursing and Midwifery Research, St John of God Murdoch Hospital, Murdoch, Western Australia, Australia
  10. 10 School of Nursing & Midwifery, Edith Cowan University, Joondalup, Western Australia, Australia
  11. 11 School of General Practice and Rural Medicine, University of Western Australia, Perth, Western Australia, Australia
  12. 12 Primary Care Collaborative Cancer Clinical Trials Group, University of Melbourne, Melbourne, Victoria, Australia
  13. 13 Victoria Comprehensive Cancer Centre Palliative Care Research Group, University of Melbourne, Melbourne, Victoria, Australia
  14. 14 Département de médecine familiale et de médecined\'urgence, Universite Laval, Faculte de medecine, Québec City, Canada
  15. 15 School of Nursing, Queensland University of Technology, Brisbane, Queensland, Australia
  1. Correspondence to Professor Geoffrey MitchellPrimary Care Clinical Unit, University of Queensland Faculty of Medicine, Brisbane, QLD 4072, Australia; g.mitchell{at}uq.edu.au

Abstract

Background With an increasing ageing population in most countries, the role of general practitioners (GPs) and general practice nurses (GPNs) in providing optimal end of life (EoL) care is increasingly important.

Objective To explore: (1) patient and carer expectations of the role of GPs and GPNs at EoL; (2) GPs’ and GPNs’ contribution to advance care planning (ACP) and (3) if primary care involvement allows people to die in the place of preference.

Method Systematic literature review. Data sources: Papers from 2000 to 2017 were sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.

Results From 6209 journal articles, 51 papers were relevant. Patients and carers expect their GPs to be competent in all aspects of palliative care. They valued easy access to their GP, a multidisciplinary approach to care and well-coordinated and informed care. They also wanted their care team to communicate openly, honestly and empathically, particularly as the patient deteriorated. ACP and the involvement of GPs were important factors which contributed to patients being cared for and dying in their preferred place. There was no reference to GPNs in any paper identified.

Conclusions Patients and carers prefer a holistic approach to care. This review shows that GPs have an important role in ACP and that their involvement facilitates dying in the place of preference. Proactive identification of people approaching EoL is likely to improve all aspects of care, including planning and communicating about EoL. More work outlining the role of GPNs in end of life care is required.

  • primary palliative care
  • general practice
  • consumer expectations
  • advance care planning
  • place of death

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Footnotes

  • Supplementary files can be viewed at: http://dx.doi.org/10.1136/bmjspcare-2018-001549.

  • Acknowledgements We would like to acknowledge generous research support from the Primary Care Collaborative Cancer Clinical Trials Group, which is funded by Cancer Australia. Dr May-Lill Johansen joined the group in 2016 as part of her sabbatical leave and her input has been invaluable. Professor Elizabeth Halcomb provided valuable advice on the discussion on the development of the role of practice nurses in end of life care.

  • Correction notice This article has been updated since it was first published. The article type has been changed to Systematic review.

  • Contributors All authors contributed equally to this work.

  • Funding This paper was funded by Royal Australian College of General Practitioner/HCF grant in 2013.

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The full protocol and dataset can be obtained on reasonable request from the corresponding author.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.