Advance care planning in primary care: a retrospective medical record study among patients with different illness trajectories

Yvonne A C Bekker, Ankie F Suntjens, Y Engels, H Schers, Gert P Westert, A Stef Groenewoud, Yvonne A C Bekker, Ankie F Suntjens, Y Engels, H Schers, Gert P Westert, A Stef Groenewoud

Abstract

Background: Advance Care Planning (ACP) enables physicians to align healthcare with patients' wishes, reduces burdensome life-prolonging medical interventions, and potentially improves the quality of life of patients in the last phase of life. However, little objective information is available about the extent to which structured ACP conversations are held in general practice. Our aim was to examine the documentation of ACP for patients with cancer, organ failure and multimorbidity in medical records (as a proxy for ACP application) in Dutch general practice.

Methods: We chose a retrospective medical record study design in seven primary care facilities. Medical records of 119 patients who died non-suddenly (55 cancer, 28 organ failure and 36 multimorbidity) were analysed. Other variables were: general characteristics, data on ACP documentation, correspondence between medical specialist and general practitioner (GP), and healthcare utilization in the last 2 years of life.

Results: In 65% of the records, one or more ACP items were registered by the GP. Most often documented were aspects regarding euthanasia (35%), the preferred place of care and death (29%) and concerns and hopes towards the future (29%). Median timing of the first ACP conversation was 126 days before death (inter-quartile range (IQR) 30-316). ACP was more often documented in patients with cancer (84%) than in those with organ failure (57%) or multimorbidity (42%) (p = 0.000). Patients with cancer had the most frequent (median 3 times, IQR 2-5) and extensive (median 5 items, IQR 2-7) ACP consultations.

Conclusion: Documentation of ACP items in medical records by GPs is present, however limited, especially in patients with multimorbidity or organ failure. We recommend more attention for - and documentation of - ACP in daily practice, in order to start anticipatory conversations in time and address the needs of all people living with advanced conditions in primary care.

Keywords: Advance care planning; End of life care; General practice; General practitioner; Medical records; Primary care.

Conflict of interest statement

The authors declare that they have no competing interests

© 2022. The Author(s).

Figures

Fig. 1
Fig. 1
Selection of patients who died non-suddenly of ‘cancer’, ‘organ failure’ or ‘multimorbidity’ in general practice
Fig. 2
Fig. 2
Prevalence and extensiveness of ACP (number of ACP items documented) for all patients and sub-groups, in percentages

References

    1. Rietjens JAC, Sudore RL, Connolly M, van Delden JJ, Drickamer MA, Droger M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017;18(9):e543–ee51. doi: 10.1016/S1470-2045(17)30582-X.
    1. UpToDate. Advance care planning and advance directives 2018 [Available from: .
    1. Houben CHM, Spruit MA, Groenen MTJ, Wouters EFM, Janssen DJA. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc. 2014;15(7):477–489. doi: 10.1016/j.jamda.2014.01.008.
    1. Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362(13):1211–1218. doi: 10.1056/NEJMsa0907901.
    1. World Health Organization . Definition of palliative care. 2002.
    1. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28(8):1000–1025. doi: 10.1177/0269216314526272.
    1. 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. doi: 10.1136/bmj.c1345.
    1. Baker A, Leak P, Ritchie LD, Lee AJ, Fielding S. Anticipatory care planning and integration: a primary care pilot study aimed at reducing unplanned hospitalisation. Br J Gen Pract. 2012;62(595):e113–e120. doi: 10.3399/bjgp12X625175.
    1. Klingler C. In der Schmitten J, Marckmann G. does facilitated advance care planning reduce the costs of care near the end of life? Systematic review and ethical considerations. Palliat Med. 2016;30(5):423–433. doi: 10.1177/0269216315601346.
    1. Groot MM, Vernooij-Dassen MJ, Crul BJ, Grol RP. General practitioners (GPs) and palliative care: perceived tasks and barriers in daily practice. Palliat Med. 2005;19(2):111–118. doi: 10.1191/0269216305pm937oa.
    1. Michiels E, Deschepper R, Van Der Kelen G, Bernheim JL, Mortier F, Vander Stichele R, et al. The role of general practitioners in continuity of care at the end of life: a qualitative study of terminally ill patients and their next of kin. Palliat Med. 2007;21(5):409–415. doi: 10.1177/0269216307078503.
    1. Evans N, Pasman HR, Donker GA, Deliens L, Van den Block L, Onwuteaka-Philipsen B. End-of-life care in general practice: a cross-sectional, retrospective survey of ‘cancer’, ‘organ failure’ and ‘old-age/dementia’ patients. Palliat Med. 2014;28(7):965–975. doi: 10.1177/0269216314526271.
    1. Meeussen K, Van den Block L, Echteld M, Bossuyt N, Bilsen J, Van Casteren V, et al. Advance care planning in Belgium and the Netherlands: a nationwide retrospective study via sentinel networks of general practitioners. J Pain Symptom Manag. 2011;42(4):565–577. doi: 10.1016/j.jpainsymman.2011.01.011.
    1. Abarshi E, Echteld M, Donker G, Van den Block L, Onwuteaka-Philipsen B, Deliens L. Discussing end-of-life issues in the last months of life: a nationwide study among general practitioners. J Palliat Med. 2011;14(3):323–330. doi: 10.1089/jpm.2010.0312.
    1. Meeussen K, Van den Block L, Bossuyt N, Bilsen J, Echteld M, Van Casteren V, et al. GPs’ awareness of patients’ preference for place of death. Br J Gen Pract. 2009;59(566):665–670. doi: 10.3399/bjgp09X454124.
    1. Ermers DJM, van Bussel KJH, Perry M, Engels Y, Schers HJ. Advance care planning for patients with cancer in the palliative phase in Dutch general practices. Fam Pract. 2019;36(5):587–593. doi: 10.1093/fampra/cmy124.
    1. Murray SA, Sheikh A. Care for all at the end of life. BMJ. 2008;336(7650):958. doi: 10.1136/bmj.39535.491238.94.
    1. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–1011. doi: 10.1136/bmj.330.7498.1007.
    1. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387–2392. doi: 10.1001/jama.289.18.2387.
    1. Gott M, Gardiner C, Small N, Payne S, Seamark D, Barnes S, et al. Barriers to advance care planning in chronic obstructive pulmonary disease. Palliat Med. 2009;23(7):642–648. doi: 10.1177/0269216309106790.
    1. Midway S, Robertson M, Flinn S, Kaller M. Comparing multiple comparisons: practical guidance for choosing the best multiple comparisons test. Bioinform Genom Dec. 2020;4:2020.
    1. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–1288. doi: 10.1177/1049732305276687.
    1. Murray SA, Kendall M, Grant E, Boyd K, Barclay S, Sheikh A. Patterns of social, psychological, and spiritual decline toward the end of life in lung cancer and heart failure. J Pain Symptom Manag. 2007;34(4):393–402. doi: 10.1016/j.jpainsymman.2006.12.009.
    1. Auriemma CL, Nguyen CA, Bronheim R, Kent S, Nadiger S, Pardo D, et al. Stability of end-of-life preferences: a systematic review of the evidence. JAMA Intern Med. 2014;174(7):1085–1092. doi: 10.1001/jamainternmed.2014.1183.
    1. Tapsfield J, Hall C, Lunan C, McCutcheon H, McLoughlin P, Rhee J, et al. Many people in Scotland now benefit from anticipatory care before they die: an after death analysis and interviews with general practitioners. BMJ Support Palliat Care. 2019;9(4):e28.
    1. Evans N, Costantini M, Pasman HR, Van den Block L, Donker GA, Miccinesi G, et al. End-of-life communication: a retrospective survey of representative general practitioner networks in four countries. J Pain Symptom Manage. 2014;47(3):604–619. doi: 10.1016/j.jpainsymman.2013.04.008.
    1. De Vleminck A, Pardon K, Beernaert K, Deschepper R, Houttekier D, Van Audenhove C, et al. Barriers to advance care planning in cancer, heart failure and dementia patients: a focus group study on general practitioners' views and experiences. PLoS One. 2014;9(1):e84905. doi: 10.1371/journal.pone.0084905.
    1. Murray SA, Boyd K, Sheikh A. Palliative care in chronic illness. BMJ. 2005;330(7492):611–612. doi: 10.1136/bmj.330.7492.611.
    1. Claessen SJ, Francke AL, Engels Y, Deliens L. How do GPs identify a need for palliative care in their patients? An interview study. BMC Fam Pract. 2013;14:42. doi: 10.1186/1471-2296-14-42.
    1. Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manag. 2007;34(1):81–93. doi: 10.1016/j.jpainsymman.2006.09.035.
    1. Wichmann AB, van Dam H, Thoonsen B, Boer TA, Engels Y, Groenewoud AS. Advance care planning conversations with palliative patients: looking through the GP’s eyes. BMC Fam Pract. 2018;19(1):184. doi: 10.1186/s12875-018-0868-5.
    1. Janssen DJA, Spruit MA, Schols J, Wouters EFM. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. Chest. 2011;139(5):1081–1088. doi: 10.1378/chest.10-1753.
    1. De Vleminck A, Houttekier D, Pardon K, Deschepper R, Van Audenhove C, Vander Stichele R, et al. Barriers and facilitators for general practitioners to engage in advance care planning: a systematic review. Scand J Prim Health Care. 2013;31(4):215–226. doi: 10.3109/02813432.2013.854590.
    1. Thoonsen B, Groot M, Verhagen S, van Weel C, Vissers K, Engels Y. Timely identification of palliative patients and anticipatory care planning by GPs: practical application of tools and a training programme. BMC Palliat Care. 2016;15:39. doi: 10.1186/s12904-016-0112-9.
    1. Mack JW, Cronin A, Keating NL, Taback N, Huskamp HA, Malin JL, et al. Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. J Clin Oncol. 2012;30(35):4387–4395. doi: 10.1200/JCO.2012.43.6055.
    1. Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet. 2012;380(9836):37–43. doi: 10.1016/S0140-6736(12)60240-2.
    1. Block SD. Medical education in end-of-life care: the status of reform. J Palliat Med. 2002;5(2):243–248. doi: 10.1089/109662102753641214.
    1. the Netherlands Quality Framework for Palliative Care.
    1. Ali AA, Adam R, Taylor D, Murchie P. Use of a structured palliative care summary in patients with established cancer is associated with reduced hospital admissions by out-of-hours general practitioners in Grampian. BMJ Support Palliat Care. 2013;3(4):452–455. doi: 10.1136/bmjspcare-2012-000371.
    1. Agar M, Currow DC, Shelby James TM, Plummer J, Sanderson C, Abernethy Preference AP. For place of care and place of death in palliative care: are these different questions? Palliat Med. 2008;22(7):787–795. doi: 10.1177/0269216308092287.
    1. Piers RD, van Eechoud IJ, Van Camp S, Grypdonck M, Deveugele M, Verbeke NC, et al. Advance care planning in terminally ill and frail older persons. Patient Educ Couns. 2013;90(3):323–329. doi: 10.1016/j.pec.2011.07.008.
    1. Howard M, Bernard C, Klein D, Elston D, Tan A, Slaven M, et al. Barriers to and enablers of advance care planning with patients in primary care: survey of health care providers. Can Fam Physician. 2018;64(4):e190–e1e8.

Source: PubMed

Sponsor e collaboratori

Condizioni mediche

Interventi farmacologici

3
Sottoscrivi