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Discordance between the perceptions of clinicians and families about end-of-life trajectories in hospitalized dementia patients

Published online by Cambridge University Press:  06 April 2021

Felicity Moon Open the ORCID record for Felicity Moon [Opens in a new window] ,
David W. Kissane  and
Fiona McDermott
Felicity Moon*
Affiliation:
Department of Social Work, Monash Medical Centre, Clayton, VIC, Australia Department of Social Work, School of Primary and Allied Health Care, Faculty of Medicine Nursing and Health Sciences, Monash University, Caulfield East, VIC, Australia
David W. Kissane
Affiliation:
School of Medicine, University of Notre Dame Australia, Darlinghurst, NSW, Australia Cunningham Centre for Palliative Care Research, St Vincent's Hospital, Sydney, Australia Department of Palliative Care, Cabrini Health, Malvern, VIC, Australia Department of Psychiatry, Monash University, Clayton, VIC, Australia
Fiona McDermott
Affiliation:
Department of Social Work, School of Primary and Allied Health Care, Faculty of Medicine Nursing and Health Sciences, Monash University, Caulfield East, VIC, Australia
*
Author for correspondence: Felicity Moon, Department of Social Work, Monash Medical Centre, 246 Clayton Road, Clayton, VIC3168, Australia. E-mail: felicity.moon@monashhealth.org
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Abstract

Background

Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions.

Context

The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death.

Methods

Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life.

Results

Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase.

Significance of results

Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.

Keywords

CaregiversDementiaHospitalizationPalliative careQualitative researchTerminal care
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 3 , June 2021 , pp. 304 - 311
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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References

REFERENCES

Ansari, AA, Pomerantz, DH, Abedini, N, et al. (2019) Clinical progress notes: Addressing prognosis in advanced dementia. Journal of Hospital Medicine 14, E1–E3.Google Scholar
Australian Bureau of Statistics (ABS) (2017) Dementia and Death in Australia (Cat. No. 3303.0). Canberra: ABS.Google Scholar
Australian Institute of Health and Welfare (AIHW) (2019) Hospital Care for People with Dementia 2016–17 (Cat. No. AGE 94). Canberra: AIHW.Google Scholar
Aworinde, J, Werbeloff, N, Lewis, G, et al. (2018) Dementia severity at death: A register-based cohort study. BMC Psychiatry 18, 355.10.1186/s12888-018-1930-5CrossRefGoogle ScholarPubMed
Berger, P and Luckmann, T (1966) The Social Construction of Reality: A Treatise in the Sociology of Knowledge. London: Penguin.Google Scholar
Blaney, JM, Crawford, G, Elder, TR, et al. (2011) Hospital cancerdeaths: Late diagnosis and missed opportunity. BMJ Supportive and Palliative Care 1(2), 135–139.10.1136/bmjspcare-2011-000036CrossRefGoogle ScholarPubMed
Braun, V, Clarke, V and Terry, G (2015) Thematic analysis. In Rohleder, P & Lyons, AC (eds.), Qualitative Research in Clinical and Health Psychology. New York, NY: Palgrave MacMillan, pp. 95–112.10.1007/978-1-137-29105-9_7CrossRefGoogle Scholar
Brown, MA, Sampson, EL, Jones, L, et al. (2012) Prognostic indicators of 6-month mortality in elderly people with advanced dementia: A systematic review. Palliative Medicine 27, 389–400.10.1177/0269216312465649CrossRefGoogle ScholarPubMed
Christakis, NA (2001) Death Foretold: Prophecy and Prognosis in Medical Care. Chicago, IL: University of Chicago.Google Scholar
Creswell, JW and Poth, CN (2017) Qualitative Inquiry and Research Design: Choosing among Five Approaches, 4th ed. Thousand Oaks, CA, USA: Sage Publications.Google Scholar
Davies, N, Maio, L, Paap, Jvr, et al. (2014) Quality palliative care for cancer and dementia in five European countries: Some common challenges. Aging and Mental Health 18(4), 400–410.10.1080/13607863.2013.843157CrossRefGoogle ScholarPubMed
Denning, KH, Greenish, W, Jones, L, et al. (2012) Barriers to providing end-of-life care for people with dementia: A whole-system qualitative study. BMJ Supportive & Palliative Care 2, 103–107.10.1136/bmjspcare-2011-000178CrossRefGoogle Scholar
Harding, NM and Palfrey, C (1997) The Social Construction of Dementia: Confused Professionals? London: Jessica Kingsley Publishers.Google Scholar
Hovland, CA and Kramer, BJ (2019) Barriers and facilitators to preparedness for death: Experiences of family caregivers of elders with dementia. Journal of Social Work in End-of-Life & Palliative Care 15, 55–74.10.1080/15524256.2019.1595811CrossRefGoogle ScholarPubMed
Lamahewa, K, Mathew, R, Iliffe, S, et al. (2018) A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expectations 21, 118–127. doi:10.1111/hex.12593.CrossRefGoogle Scholar
Lewis, LF (2014) Caregivers’ experiences seeking hospice care for loved ones with Dementia. Qualitative Health Research 24, 1221–1231.10.1177/1049732314545888CrossRefGoogle ScholarPubMed
Lunney, J, Lynn, J and Hogan, C (2002) Profiles of older medicare decedents. Journal of the American Geriatrics Society 50, 1108–1112.10.1046/j.1532-5415.2002.50268.xCrossRefGoogle ScholarPubMed
Maher, C, Hadfield, M, Hutchings, M, et al. (2018) Ensuring rigor in qualitative data analysis: A design research approach to coding combining NVivo with traditional material methods. International Journal of Qualitative Methods 17(1). doi:10.1177/1609406918786362.CrossRefGoogle Scholar
Murray, SA, Kendall, M, Boyd, K, et al. (2005) Illness trajectories and palliative care. BMJ 330, 1007–1011.10.1136/bmj.330.7498.1007CrossRefGoogle ScholarPubMed
Pohontsch, NJ, Scherer, M and Eisele, M (2017) (In-)formal caregivers’ and general practitioners’ views on hospitalizations of people with dementia — An exploratory qualitative interview study. BMC Health Services Research 17, 530.10.1186/s12913-017-2484-9CrossRefGoogle Scholar
Polkinghorne, D (1988) Narrative Knowing and the Human Sciences. Albany, NY: State University of New York Press.Google Scholar
Reisberg, B (1988) Functional assessment staging (FAST). Psychopharmacology Bulletin 24, 653–659.Google Scholar
Reyniers, T, Houttekier, D, Cohen, J, et al. (2014) What justifies a hospital admission at the end of life? A focus group study on perspectives of family physicians and nurses. Palliative Medicine 28(7), 941–948.10.1177/0269216314522317CrossRefGoogle Scholar
Sadak, T, Foster Zdon, S, Ishado, E, et al. (2017) Potentially preventable hospitalizations in dementia: Family caregiver experiences. International Psychogeriatrics 29(7), 1201–1211.10.1017/S1041610217000217CrossRefGoogle ScholarPubMed
Sampson, EL, Blanchard, MR, Jones, L, et al. (2009) Dementia in the acute hospital: Prospective cohort study of prevalence and mortality. British Journal of Psychiatry 195(1), 61–66.10.1192/bjp.bp.108.055335CrossRefGoogle ScholarPubMed
Singh, I, Edwards, C, Duric, D, et al. (2019) Dementia in an acute hospital setting: Health service research to profile patient characteristics and predictors of adverse clinical outcomes. Geriatrics (Basel) 4(1), 7. https://doi.org/10.3390/geriatrics4010007.CrossRefGoogle Scholar
Small, N, Froggatt, K and Downs, M (2007) Living and Dying with Dementia: Dialogues About Palliative Care. New York, NY: Oxford University Press.10.1093/acprof:oso/9780198566878.001.0001CrossRefGoogle Scholar
Tan, HM, Lee, SF, O'Connor, MM, et al. (2012) A case study approach to investigating end-of-life decision making in an acute health service. Australian Health Review 37, 93–97.10.1071/AH11125CrossRefGoogle Scholar
Thune-Boyle, ICV, Sampson, EL, Jones, L, et al. (2010) Challenges to improving end of life care of people with advanced dementia in the UK. Dementia 9(2), 259–284.CrossRefGoogle Scholar
van Der Steen, JT, Onwuteaka-Philipsen, BD, Knol, DL, et al. (2013) Caregivers’ understanding of dementia predicts patients’ comfort at death: A prospective observational study. BMC Medicine 11, 105.10.1186/1741-7015-11-105CrossRefGoogle ScholarPubMed
van Der Steen, JT, Radbruch, L, Hertogh, CM, et al. (2014) White paper defining optimal palliative care in older people with dementia: A delphi study and recommendations from the european association for palliative care. Palliative Medicine 28, 197–209.10.1177/0269216313493685CrossRefGoogle ScholarPubMed
van de Vorst, IE, Koek, HL, Bots, ML, et al. (2016) Evaluation of underlying causes of death in patients with dementia to support targeted advance care planning. Journal of Alzheimer's Disease 53, 117–125.10.3233/JAD-150925CrossRefGoogle ScholarPubMed
van Riet Paap, J, Mariani, E, Chattat, R, et al. (2015) Identification of the palliative phase in people with dementia: A variety of opinions between healthcare professionals. BMC Palliative Care 14, 56.10.1186/s12904-015-0053-8CrossRefGoogle ScholarPubMed
Widera, E and Bernacki, R (2015) Dementia. In Cherny, N, Fallon, M, Kaasa, S, Portenoy, RK and Currow, DC (eds.), Oxford Textbook of Palliative Medicine. Oxford, UK: Oxford University Press.Google Scholar
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