Advanced Care Planning for Persons With Dementia in Primary Care: Attitudes and Barriers Among Health-Care Professionals

Abstract

Background:

Advance care planning (ACP) provides clarity on goals and preferences for future health-care decisions, the timeliness of which is critical for persons with dementia.

Aim:

This study assessed Primary Care Collaborative Memory Clinic (PCCMC) health-care practitioners’ desire for more education on ACP, capacity for and attitudes toward ACP, and current ACP practices in their regular family practice and in their PCCMC.

Methods:

Primary Care Collaborative Memory Clinic health-care professionals completed a questionnaire in which they rated their interest in learning various ACP-related topics (5-point scale: not at all to very much so), attitudes toward ACP, and the importance of and perceived degree of responsibility for ACP (5-point scale: not at all to extremely). Respondents estimated ACP completion in regular family practice and PCCMC.

Results:

Two hundred and sixty one surveys were completed. Mean knowledge ratings were moderate (M = 3.0) and mean ratings of interest in ACP topics were all high (median ≥ 4). Despite the perception that ACP is very important (M = 4.9) and the responsibility of PCCMCs (M = 3.7), the majority of respondents estimated that 40% or fewer patients have had ACP. Ratings of willingness to conduct ACP (M = 3.7) and comfort level (M = 3.4) were moderate but significantly exceeded ratings of ability (M = 2.9), comfort (M = 3.5), and confidence (M = 2.8).

Conclusion:

There was a striking disconnect between perceptions of the importance of completing ACP for persons with dementia and actual ACP completion rates. Primary Care Collaborative Memory Clinics may be in an ideal position to support ACP discussions; however, there is a need to improve health-care professionals’ knowledge and attitudes toward ACP.

Keywords

advanced care planning primary care dementia

Get full access to this article

View all access options for this article.

References

Bernacki

Block

. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174(12):1994–2003. doi:10.1001/jamainternmed.2014.5271.

Robinson

Dickinson

Rousseau

et al. A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age Ageing. 2012;41(2):263–269. doi:10.1093/ageing/afr148.

Zhang

Wright

Huskamp

et al. Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med. 2009;169(5):480–488. doi:10.1001/archinternmed.2008.587.

Heyland

Barwich

Pichora

et al. Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med. 2013;173(9):778–787. doi:10.1001/jamainternmed.2013.180.

Ramsaroop

Reid

Adelman

. Completing an advance directive in the primary care setting: what do we need for success? J Am Geriatr Soc. 2007;55(2):277–283. doi:10.1111/j.1532-5415.2007.01065.x.

Howard

Bernard

Klein

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–e198.

Block

. Medical education in end-of-life care: the status of reform. J Palliat Med. 2002;5(2):243–248. doi:10.1089/109662102753641214.

Brazil

Carter

Galway

et al. General practitioners perceptions on advance care planning for patients living with dementia. BMC Palliat Care. 2015;14:14. doi:10.1186/s12904-015-0019-x.

Keating

Landrum

Rogers

et al. Physician factors associated with discussions about end-of-life care. Cancer. 2010;116(4):998–1006. doi:10.1002/cncr.24761.

10.

Mitchell

Miller

Teno

Kiely

Davis

Shaffer

. Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA. 2010;304(17):1929–1935. doi:10.1001/jama.2010.1572.

11.

Gregory

Roked

Jones

et al.

Is the degree of cognitive impairment in patients with Alzheimer’s disease related to their capacity to appoint an enduring power of attorney?

Age Ageing. 2007;36(5):527–531. doi:10.1093/ageing/afm104.

12.

Lee

Hillier

Molnar

Borrie

. Primary care collaborative memory clinics: building capacity for optimized dementia care. Healthc Q. 2017;19(4):55–62.

13.

Lee

Hillier

Stolee

et al. Enhancing dementia care: a primary care-based memory clinic. J Am Geriatr Soc. 2010;58(11):2197–2204. doi:10.1111/j.1532-5415.2010.03130.x.

14.

Lee

Kasperski

Weston

. Building capacity for dementia: training program to develop primary care memory clinics. Can Fam Physician. 2011;57(7):e249–e252.

15.

Lee

Weston

Hillier

. Developing memory clinics in primary care: an evidence-based interprofessional program of continuing professional development. J Contin Ed Health Prof. 2013;33(1):24–32. doi:10.1002/chp.21163.

16.

Lee

Hillier

Weston

. “Booster Days”: an educational initiative to develop a community of practice of primary care collaborative memory clinics. Gerontol Geriatr Educ. 2017:1–16. doi:10.1080/02701960.2017.1373350.

17.

R Core Team. A Language and Environment for Statistical Computing. Vienna, Austria: R Foundation for Statistical Computing; 2016.

18.

Cavanagh

. Content analysis: concepts, methods, and applications. Nurse Pract. 1997;4(5):16.

19.

Wright

Zhang

Ray

et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665–1673. doi:10.1001/jama.300.14.1665.

20.

Mitchell

Kiely

Hamel

. Dying with advanced dementia in the nursing home. Arch Intern Med. 2004;164(3):321–326. doi:10.1001/archinte.164.3.321.

21.

Hertogh

. Advance care planning and the relevance of a palliative care approach in dementia. Age Ageing. 2006;35(6):553–555. doi:10.1093/ageing/afl103.

22.

Robinson

Dickinson

Bamford

et al. A qualitative study: professionals’ experiences of advance care planning in dementia and palliative care, ‘a good idea in theory but…’. Palliat Med. 2013;27(5):401–408. doi:10.1177/0269216312465651.

23.

Garand

Dew

Lingler

DeKosky

. Incidence and predictors of advance care planning among persons with cognitive impairment. Am J Geriatr Psychiatry. 2011;19(8):712–720. doi:10.1097/JGP.0b013e3181faebef.

24.

Harris

. Forget me not: palliative care for people with dementia. Postgrad Med J. 2007;83(980):362–366. doi:10.1136/pgmj.2006.052936.

25.

Sampson

Gould

Lee

Blanchard

. Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age Ageing. 2006;35(2):187–189. doi:10.1093/ageing/afj025.

26.

De Vleminck

Houttekier

Pardon

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.

27.

Lund

Richardson

May

. Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS One. 2015;10(2):e0116629. doi:10.1371/journal.pone.0116629.

28.

Fulmer

Escobedo

Berman

Koren

Hernández

Hult

. Physicians’ views on advance care planning and end-of-life care conversations. J Am Geriatr Soc. 2018;66(6):1201–1205. doi:10.1111/jgs.15374.

29.

Fazel

Hope

Jacoby

. Effect of cognitive impairment and premorbid intelligence on treatment preferences for life-sustaining medical therapy. Am J Psychiatry. 2000;157(76):1009–1011. doi:10.1176/appi.ajp.157.6.1009.

30.

Menne

Tucke

Whitlatch

Feinberg

. Decision-making involvement scale for individuals with dementia and family caregivers. Am J Alzheimers Dis Other Demen. 2008;23(1):23–29. doi:10.1177/1533317507308312.

31.

Hertogh

Ribbe

. Ethical aspects of medical decision-making in demented patients: a report from the Netherlands. Alzheimer’s Disease and Associated Disorders. 1996;10(10):11–19.

32.

Beck

McIlfatrick

Hasson

Leavey

. Nursing home manager’s knowledge, attitudes and beliefs about advance care planning for people with dementia in long-term care settings: a cross-sectional survey. J Clin Nurs. 2017;26(17-18):2633–2645. doi:10.1111/jocn.13690.

33.

Beck

McIlfatrick

Hasson

Leavey

. Health care professionals’ perspectives of advance care planning for people with dementia living in long-term care settings: a narrative review of the literature. Dementia (London). 2017;16(4):486–512. doi:10.1177/1471301215604997].

34.

Goodman

Amador

Elmore

Machen

Mathie

. Preferences and priorities for ongoing and end-of-life care: a qualitative study of older people with dementia resident in care homes. Int J Nurs Stud. 2013;50(12):1639–1647. doi:10.1016/j.ijnurstu.2013.06.008 [doi].

35.

Carpenter

Lee

Ruckdeschel

Van Haitsma

Feldman

. Adult children as informants about parent’s psychosocial preferences. Fam Relations Interdisciplin J Appl Fam Sci. 2006;55(5):552–563. doi:10.1111/j.1741-3729.2006.00425.x.

36.

Roberto

. Making critical health care decisions for older adults: consensus among family members. Fam Relations Interdisciplin J Appl Fam Sci. 1999;78(2):167–175. doi:10.2307/585080.

37.

Harrison Dening

King

Jones

Vickestaff

Sampson

. Advance care planning in dementia: do family carers know the treatment preferences of people with early dementia? PLoS One. 2016;11(7):e0159056. doi:10.1371/journal.pone.0159056.

38.

Shalowitz

Garrett-Mayer

Wendler

. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166(5):493–497. doi:10.1001/archinte.166.5.493.

39.

Whitlatch

Feinberg

. Family care and decision making. In: Cox

, ed. Dementia and Social Work Practice: Research and Intervention. New York, NY: Springer; 2007:129–147.

40.

Cresp

Lee

Moss

. Experiences of substitute decision makers in making decisions for older persons diagnosed with major neurocognitive disorder at end of life: a qualitative systematic review protocol. JBI Database System Rev Implement Rep. 2017;15(7):1770–1777. doi:10.11124/JBISRIR-2016-003252.

41.

Wendler

Rid

. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336–346. doi:10.7326/0003-4819-154-5-201103010-00008.

42.

Mitchell

Teno

Kiely

et al. The clinical course of advanced dementia. New Engl J Med. 2009;361(16):1529–1538. doi:10.1056/NEJMoa0902234.

43.

Baughman

Ludwick

Fischbein

et al. Development of a scale to assess physician advance care planning self-efficacy. Am J Hosp Palliat Care. 2017;34(5):435–441. doi:10.1177/1049909115625612.

44.

You

Downar

Fowler

et al. Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians. JAMA Intern Med. 2015;175(4):549–556. doi:10.1001/jamainternmed.2014.7732.