Preferences for end-of-life care: a nominal group study of people with dementia and their family carers

Karen H Dening, Louise Jones, Elizabeth L Sampson, Karen H Dening, Louise Jones, Elizabeth L Sampson

Abstract

Background: The wishes and preferences of people with dementia should inform decisions on future care. However, such decisions are often left to family carers and may not reflect those the person with dementia would have made for themselves. We know little about what influences agreement between people with dementia and their carers.

Aim: To explore whether people with dementia and their carers were able to generate and prioritise preferences for end-of-life care. We examined whether carers influenced the choices made by the persons with dementia.

Design: Nominal group technique.

Setting/participants: People with dementia (n = 6), carers (n = 5) and dyads of people with dementia and carers (n = 6) attending memory assessment services.

Methods: Three modified nominal group technique groups were conducted in five stages: (1) silent generation of ideas, (2) discussion, (3) further generation of ideas, (4) discussion and themeing and (5) ranking. The discussions were recorded, transcribed and analysed for thematic content using NVIVO8.

Results: Quality of care, family contact, dignity and respect were ranked as significant themes by all groups. The analysis of transcripts revealed three main themes: quality of care, independence and control and carer burden. People with dementia had difficulty considering their future selves. Carers wanted much control at the end of life, raising issues of assisted dying and euthanasia.

Conclusions: Wishes and preferences of people with dementia and their family carers may differ. To ensure the wishes of people with dementia are respected, their views should be ascertained early in the disease before their ability to consider the future is compromised.

Conflict of interest statement

Conflict of interest: The authors declare that there is no conflict of interest.

Figures

Figure 1.
Figure 1.
Ranking sheet.
Figure 2.
Figure 2.
Ranking of items: nominal group 1 (carers of people with dementia).
Figure 3.
Figure 3.
Ranking of items: nominal group 2 (people with dementia).
Figure 4.
Figure 4.
Ranking of items: nominal group 3 (dyads: people with dementia and their main carer).
Figure 5.
Figure 5.
Final ranking of all statements.

References

    1. Henry C, Seymour J. Advance care planning: a guide for health and social care staff. London: National End of Life Care Programme, Department of Health, 2007
    1. Teno JM. Advance directives for nursing home residents: achieving compassionate, competent, cost-effective care. JAMA 2010; 283(11): 1481–1482
    1. Seymour J, Gott M, Bellamy G, et al. Planning for the end of life: the views of older people about advance care statements. Soc Sci Med 2004; 59(1): 57.
    1. Van der Heide A, Deliens L, Faisst K, et al. End-of-life decision making in six European countries: descriptive study. Lancet 2003; 362: 345–350
    1. Department of Constitutional Affairs Mental Capacity Act. 2005
    1. Dening KH, Jones L, Sampson EL. Advance care planning for people with dementia: a review. Int Psychogeriatr 2011; 23(10): 1535–1551
    1. Robinson L, Dickinson C, Rousseau N, 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
    1. Fazel S, Hope T, Jacoby R. Assessment of competence to complete advance directives: validation of a patient centred approach. BMJ 1999; 318(7182): 493–498
    1. Fazel S, Hope T, Jacoby R. Effect of cognitive impairment and premorbid intelligence on treatment preferences for life-sustaining medical therapy. Am J Psychiatry 2000; 157(6): 1009–1011
    1. Banerjee S, Willis R, Matthews D, et al. Improving the quality of care for mild to moderate dementia: an evaluation of the Croydon Memory Service Model. Int J Geriatr Psychiatr 2007; 22: 782–788
    1. Hirschman KB, Xie SX, Feudtner C, et al. How does Alzheimer’s disease patient’s role in medical decision making change over time? J Geriatr Psychiatr Neurol 2004; 17(2): 55–60
    1. Hirschman KB, Kapo JM, Karlawish JHT. Why doesn’t a family member of a person with advanced dementia use a substituted judgment when making a decision for that person. Am J Geriatr Psychiatr 2006; 14(8): 659–667
    1. Kiely DK, Prigerson H, Mitchell SL. Health care proxy grief symptoms before the death of nursing home residents with advanced dementia. Am J Geriatr Psychiatr 2008; 16(8): 664–673
    1. Ryan AA, Scullion HF. Nursing home placement: an exploration of the experiences of family carers. J Adv Nurs 2000; 32(5): 1187–1195
    1. Davies S, Nolan M. ‘Making the move’: relatives’ experiences of the transition to a care home. Health Soc Care Community 2004; 12(6): 517–526
    1. Delbecq AL, Van de Ven AH. A group process model for problem identification and program planning. J Appl Behav Sci 1971; 7(3): 36–44
    1. Tuffrey-Wijne I, Bernal J, Butler G, et al. Using nominal group technique to investigate the views of people with intellectual disabilities on end of life care provision. J Adv Nurs 2006; 58(1): 80–89
    1. Bostwick D, Foss G. Obtaining consumer input: two strategies for identifying and ranking the problems of mentally retarded adults. Educ Train Ment Retard 1981; 16: 207–212
    1. Moore C. Group techniques for idea building. London: Sage, 1987
    1. World Health Organisation (WHO) ICD-10: international statistical classification of diseases and related health problems. 10th ed. Geneva: WHO, 1992
    1. Folstein MF, Folstein SE, McHugh PR. ‘Mini-Mental state’. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12: 189–198
    1. O.P.S.I Mental Capacity Act. 2005
    1. Van de Ven AH, Delbecq AL. The nominal group as a research instrument for exploratory health studies. Am J Public Health 1972; 62(3): 337–342
    1. D.o.H Planning for your future care: a guide. 2009; London: D.o.H
    1. Coffey A, Atkinson P. Making sense of qualitative data. Thousand Oaks, CA: Sage, 1996
    1. QSR International NVIVO 8,
    1. de Boer ME, Droes RM, Jonker C, et al. Thoughts on the future: the perspectives of elderly people with early-stage Alzheimer’s disease and the implications for advance care planning. AJOB Prim Res 2012; 3: 14–22
    1. Gregory R, Roked F, Jones L, 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): 527–532
    1. Reamy AM, Kim K, Zarit SH, et al. Understanding discrepancy in perceptions of values: individuals with mild to moderate dementia and their family caregivers. Gerontologist 2011; 51(4): 473–483
    1. BBC Can Gerry Robinson fix dementia care homes?,
    1. Molloy DW, Guyatt GH, Russo R, et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 2000; 283(102): 1437–1444
    1. Horne G, Seymour J, Shepherd K. Advance care planning for patients with inoperable lung cancer. Int J Palliat Nurs 2007; 12(4): 172–178
    1. Barnes KA, Barlow CA, Harrington J, et al. Advance care planning discussions in advanced cancer: analysis of dialogues between patients and care planning mediators. Palliat Support Care 2011; 9(1): 73–79
    1. Low J, Pattenden J, Candy B, et al. Palliative care in advanced heart failure: an international review of the perspectives of recipients and health professionals on care provision. J Card Fail 2011; 17(3): 231–252
    1. Piers RD, van Eechoud IJ, Van Camp S, et al. Advance care planning in terminally ill and frail older persons. Patient Educ Couns. Epub ahead of print 1 September 2011. DOI: 10.1016/j.pec.2011.07.008
    1. Aw D, Hayhoe B, Smajdor A, et al. Advance care planning and the older patient. QJM 2012; 105(3): 225–230
    1. Ahluwalia SC, Gross CP, Chaudry SI, et al. Change in comorbidity prevalence with advancing age among persons with heart failure. J Gen Intern Med 2011; 26(10):1145–1151
    1. Retrum JH, Nowels CT, Bekelman DB. Patient and caregiver concordance: the importance of dyads in heart failure care. J Cardiovasc Nurs. Epub ahead of print 17 February 2012. DOI: 10.1097/JCN.0b013e3182435f27

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