Hostname: page-component-cd9895bd7-gvvz8 Total loading time: 0 Render date: 2024-12-25T04:25:39.528Z Has data issue: false hasContentIssue false
  • English
  • Français

Discussing advance care planning: insights from older people living in nursing homes and from family members

Published online by Cambridge University Press:  09 October 2017

Francesca Ingravallo ,
Veronica Mignani ,
Elena Mariani ,
Giovanni Ottoboni ,
Marie Christine Melon  and
Rabih Chattat
Francesca Ingravallo*
Affiliation:
Department of Medical and Surgical Sciences (DIMEC), University of Bologna, Via Irnerio 49, 40126 Bologna, Italy
Veronica Mignani
Affiliation:
Department of Medical and Surgical Sciences (DIMEC), University of Bologna, Via Irnerio 49, 40126 Bologna, Italy
Elena Mariani
Affiliation:
Department of Psychology (PSI), University of Bologna, Viale Carlo Berti Pichat 5, 4012 Bologna, Italy.
Giovanni Ottoboni
Affiliation:
Department of Psychology (PSI), University of Bologna, Viale Carlo Berti Pichat 5, 4012 Bologna, Italy.
Marie Christine Melon
Affiliation:
CADIAI, Via Boldrini 8, 40121 Bologna, Italy
Rabih Chattat
Affiliation:
Department of Psychology (PSI), University of Bologna, Viale Carlo Berti Pichat 5, 4012 Bologna, Italy.
*
Correspondence should be addressed to: Francesca Ingravallo, Department of Medical and Surgical Sciences (DIMEC), University of Bologna, Via Irnerio 49, 40126 Bologna, Italy. Phone: +39-0512088366; Fax +39-0512088358. Email: [email protected].
Get access

Abstract

Background:

Evidence concerning when and in which manner older people living in nursing homes (NHs) would prefer to discuss advance care planning (ACP) is still scarce. This study explored the attitudes of NH residents and family members toward ACP and their opinions as to the right time to broach the subject, the manner in which it should be approached, and the content of ACP.

Methods:

This was a qualitative study using face-to-face interviews with 30 residents (age range 66–94), and 10 family members from 4 Italian NHs. The interviews were analyzed using content analysis.

Results:

Three main themes were identified: (1) life in the NH, including thoughts about life in a nursing home, residents’ concerns, wishes and fears, and communication barriers; (2) future plans and attitudes toward ACP, including attitudes toward planning for the future and plans already made, and attitudes toward and barriers against ACP; (3) contents and manner of ACP, including contents of ACP discussions, the right moment to introduce ACP, with whom it is better to discuss ACP, and attitudes toward advance directives.

Conclusions:

ACP was a welcome intervention for the majority of participants, but an individualized assessment of the person's readiness to be involved in ACP is needed. For people with dementia, it is essential to identify the right time to introduce ACP before NH admission. Participants in our study suggested that ACP should include palliative care and practical issues, and that in the NH setting all staff and family members may have a valuable role in ACP.

Keywords

advance care directivesdecision-makingresidential facilitiesfrail elderlycaregiversdementiapalliative care
Type
Research Article
Information
International Psychogeriatrics , Volume 30 , Issue 4: Issue Theme: Delirium , April 2018 , pp. 569 - 579
Copyright
Copyright © International Psychogeriatric Association 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ashton, S. E., Roe, B., Jack, B. and McClelland, B. (2016). End of life care: the experiences of advance care planning amongst family caregivers of people with advanced dementia – a qualitative study. Dementia, 15, 958–975. doi: 10.1177/1471301214548521CrossRefGoogle ScholarPubMed
Black, B. S. et al. (2009). Surrogate decision makers’ understanding of dementia patients’ prior wishes for end-of-life care. Journal of Aging and Health, 21, 627–650. doi: 10.1177/0898264309333316CrossRefGoogle ScholarPubMed
Bollig, G., Gjengedal, E. and Rosland, J. H. (2016). They know!-Do they? a qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes. Palliative Medicine, 30, 456–470. doi: 10.1177/0269216315605753CrossRefGoogle ScholarPubMed
Cohen, A. and Nirenberg, A. (2011). Current practices in advance care planning: implications for oncology nurses. Clinical Journal of Oncology Nursing, 15, 547–553. doi: 10.1188/11.CJON.547-553CrossRefGoogle ScholarPubMed
Council of Europe (2009). Recommendation CM/Rec(2009)11 of the Committee of Ministers to member states on principles concerning continuing powers of attorney and advance directives for incapacity. Retrieved from https://www.coe.int/t/dghl/standardsetting/cdcj/CDCJ%20Recommendations/CM_Rec(2009)11E_Principles%20on%20powers%20of%20attorney.pdf; last accessed 24 April 2017.Google Scholar
Di Giulio, P., Toscani, F., Villani, D., Brunelli, C., Gentile, S. and Spadin, P. (2008). Dying with advanced dementia in long-term care geriatric institutions: a retrospective study. Journal of Palliative Medicine, 11, 1023–1028. doi: 10.1089/jpm.2008.0020.CrossRefGoogle ScholarPubMed
Dickinson, C., Bamford, C., Exley, C., Emmett, C., Hughes, J. and Robinson, L. (2013). Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning. International Psychogeriatrics, 25, 2011–2021. doi: 10.1017/S1041610213001531.CrossRefGoogle ScholarPubMed
Fosse, A., Schaufel, M. A., Ruths, S. and Malterud, K. (2014). End-of-life expectations and experiences among nursing home patients and their relatives–a synthesis of qualitative studies. Patient Education and Counseling, 97, 3–9. doi: 10.1016/j.pec.2014.05.025.CrossRefGoogle ScholarPubMed
Gilissen, J. et al. (2017). Preconditions for successful advance care planning in nursing homes: A systematic review. International Journal of Nursing Studies, 66, 47–59. doi: 10.1016/j.ijnurstu.2016.12.003.CrossRefGoogle ScholarPubMed
Gjerberg, E., Lillemoen, L., Førde, R. and Pedersen, R. (2015). End-of-life care communications and shared decision-making in Norwegian nursing homes–experiences and perspectives of patients and relatives. BMC Geriatrics, 15, 103. doi: 10.1186/s12877-015-0096-y.CrossRefGoogle ScholarPubMed
Goodman, C., Amador, S., Elmore, N., Machen, I. and Mathie, E. (2013). Preferences and priorities for ongoing and end-of-life care: a qualitative study of older people with dementia resident in care homes. International Journal of Nursing Studies, 50, 1639–1647. doi: 10.1016/j.ijnurstu.2013.06.008CrossRefGoogle ScholarPubMed
Gott, M., Small, N., Barnes, S., Payne, S. and Seamark, D. (2008). Older people's views of a good death in heart failure: implications for palliative care provision. Social Science & Medicine, 67, 1113–1121. doi: 10.1016/j.socscimed.2008.05.024.CrossRefGoogle ScholarPubMed
Hirschman, K. B., Kapo, J. M. and Karlawish, J. H. (2008). Identifying the factors that facilitate or hinder advance planning by persons with dementia. Alzheimer Disease and Associated Disorders, 22, 293–298. doi: 10.1097/WAD.0b013e318169d669CrossRefGoogle ScholarPubMed
Hsieh, H. F. and Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288. doi: 10.1177/1049732305276687CrossRefGoogle ScholarPubMed
Ingravallo, F., Govi, A., Gnucci, V. and Miccinesi, G. (2014). Are the Italian municipal registries of advance directives going in the right direction?. Minerva Anestesiologica, 80, 1357–1358.Google ScholarPubMed
ISTAT (2015). Presidi residenziali socio-assistenziali e socio-sanitari 2015. Retrieved from https://www.istat.it/it/archivio/7786; last accessed 24 April 2017.Google Scholar
ISTAT (2017). Il futuro demografico del paese. Retrieved from https://www.istat.it/it/files/2017/04/previsioni-demografiche.pdf; last accessed 8 August 2017.Google Scholar
Johnstone, M. J. and Kanitsaki, O. (2009). Ethics and advance care planning in a culturally diverse society. Journal of Transcultural Nursing, 20, 405–416. doi: 10.1177/1043659609340803CrossRefGoogle Scholar
Lund, S., Richardson, A. and May, C. (2015). Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS One, 10, e0116629. doi: 10.1371/journal.pone.0116629CrossRefGoogle ScholarPubMed
Martin, R. S., Hayes, B., Gregorevic, K. and Lim, W. K. (2016). The effects of advance care planning interventions on nursing home residents: a systematic review. Journal of the American Medical Directors Association, 17, 284–293. doi: 10.1016/j.jamda.2015.12.017CrossRefGoogle ScholarPubMed
Mignani, V., Ingravallo, F., Mariani, E. and Chattat, R. (2017). Perspectives of elders living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis. Clinical Intervantions in Aging, 12, 475–484. doi: 10.2147/CIA.S128937CrossRefGoogle ScholarPubMed
Musa, I., Seymour, J., Narayanasamy, M. J., Wada, T. and Conroy, S. (2015). A survey of older peoples’ attitudes towards advance care planning. Age and Ageing, 45, 371–376. doi: 10.1093/ageing/afv041CrossRefGoogle Scholar
Ott, B. B. (2008). Views of African American nursing home residents about living wills. Geriatric Nursing, 29, 117–124. doi: 10.1016/j.gerinurse.2007.05.001CrossRefGoogle ScholarPubMed
Piers, R. D. et al. (2013). Advance care planning in terminally ill and frail older persons. Patient Education and Counseling, 90, 323–329. doi: 10.1016/j.pec.2011.07.008CrossRefGoogle ScholarPubMed
Poppe, M., Burleigh, S. and Banerjee, S. (2013). Qualitative evaluation of advanced care planning in early dementia (ACP-ED). PLoS ONE, 8, e60412. doi: 10.1371/journal.pone.0060412CrossRefGoogle ScholarPubMed
Rietjens, J., Korfage, I. and van der Heide, A. (2016). Advance care planning: not a panacea. Palliative Medicine, 30, 421–422. doi: 10.1177/0269216316642963CrossRefGoogle Scholar
Robinson, L. et al. (2012). A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age and Ageing, 41, 263–269. doi: 10.1093/ageing/afr148CrossRefGoogle ScholarPubMed
Seymour, J., Gott, M., Bellamy, G., Ahmedzai, S. H. and Clark, D. (2004). Planning for the end of life: the views of older people about advance care statements. Social Science & Medicine, 59, 57–68.CrossRefGoogle ScholarPubMed
Singer, P. A., Martin, D. K., Lavery, J. V., Thiel, E. C., Kelner, M. and Mendelssohn, D. C. (1998). Reconceptualizing advance care planning from the patient's perspective. Archives of Internal Medicine, 158, 879–884. doi: 10.1001/archinte.158.8.879CrossRefGoogle ScholarPubMed
Stewart, F., Goddard, C., Schiff, R. and Hall, S. (2011). Advanced care planning in care homes for older people: a qualitative study of the views of care staff and families. Age and Ageing, 40, 330–335. doi: 10.1093/ageing/afr006CrossRefGoogle Scholar
Stievano, A., Marinis, M. G., Russo, M. T., Rocco, G. and Alvaro, R. (2012). Professional dignity in nursing in clinical and community workplaces. Nursing Ethics, 19, 341–356. doi: 10.1177/0969733011414966CrossRefGoogle ScholarPubMed
Stone, L., Kinley, J. and Hockley, J. (2013). Advance care planning in care homes: the experience of staff, residents, and family members. International Journal of Palliative Nursing, 19, 550–557. doi: 10.12968/ijpn.2013.19.11.550CrossRefGoogle ScholarPubMed
Sudore, R. L. et al. (2017). Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. Journal of Pain and Symptom Management, 53, 821–832.e1. doi: 10.1016/j.jpainsymman.2016.12.331.CrossRefGoogle ScholarPubMed
Weathers, E. et al. (2016). Advance care planning: a systematic review of randomised controlled trials conducted with older adults. Maturitas, 91, 101–109. doi: 10.1016/j.maturitas.2016.06.016CrossRefGoogle ScholarPubMed