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Dying well with dementia: Qualitative examination of end-of-life care

  • Vanessa Lawrence (a1), Kritika Samsi (a2), Joanna Murray (a1), Danielle Harari (a3) and Sube Banerjee (a4)...
Abstract
Background

People with dementia often die badly, receiving end-of-life care of poorer quality than that given to those who are cognitively intact.

Aims

To define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK.

Method

In-depth interviews were conducted with 27 bereaved family carers and 23 care professionals recruited from the community, care homes, general hospitals and continuing care units. Data were analysed using the constant comparison method.

Results

The data highlighted the challenge and imperative of ‘dementia-proofing’ end-of-life care for people with dementia. This requires using dementia expertise to meet physical care needs, going beyond task-focused care and prioritising planning and communication with families.

Conclusions

The quality of end-of-life care exists on a continuum across care settings. Together, the data reveal key elements of good end-of-life care and that staff education, supervision and specialist input can enable its provision.

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Copyright
Corresponding author
Sube Banerjee, Institute of Psychiatry, King's College London, De Crespigny Park, London SE5 8AF, UK. Email: s.banerjee@kcl.ac.uk
Footnotes
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See editorial, pp. 357–359, this issue.

Declaration of interest

None.

Footnotes
References
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Dying well with dementia: Qualitative examination of end-of-life care

  • Vanessa Lawrence (a1), Kritika Samsi (a2), Joanna Murray (a1), Danielle Harari (a3) and Sube Banerjee (a4)...
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eLetters

Use of Karnofsky Performance Scale in Dementia

Devender Singh Yadav, Specialty Doctor in Psychiatry
13 December 2011

In their thought provoking article on Dying well with dementia: qualitative examination of end -of- life care [1], the authors suggests educating the patient and their family, advance care planning, using advanced decisions, and improved planning and communication between the various care professionals and recipients of care.

Care professionals are sometimes hesitant and are reluctant to discuss with patients and their families prognostic estimates of various diseases and a paradigm shift is indeed needed [2].

The End -of -life care in dementia can be improved by educating the patient and their family about prognosis, using the Karnofsky Performance Scale (KPS) and the Australian-modified (AKPS) scale [3].

The KPS has been repeatedly demonstrated to be useful in assisting prognostication and can reliably determine outcomes and risk in geriatric patients and also the targeting of services to ambulatory geriatric patients. It was a significant predictor of hospitalizations, survival time, community residence, and institutionalization [4].

KPS can help in predicting when a patient with dementia is appropriate for hospice care.

KPS has been used as an assessment tool for performance status in oncology since 1948 and is commonly regarded as the gold standard measurement of performance status in cancer [5].

References:

Lawrence V, Samsi K, Murray J, Harari D, Banerjee S. Dying well with dementia: qualitative examination of end -of- life care. Br J Psychiatry 2011; 199: 417-22Smith AK, Williams BA, and Lo B. Discussing overall prognosis with the very elderly. N Engl J Med 2011; 365 (23): 2149-51Abernethy AP, Shelby-James T, Fazekas BS, Woods D, and Currow DC. The Australian-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice. BMC Palliative Care 2005; 4: 7 Crooks V, Waller S, et al. The use of the Karnofsky Performance Scale in determining outcomes and risk in geriatric outpatients. J Gerontol 1991; 46: 139-144. Schag CC, Heinrich RL, Ganz PA. Karnofsky performance status revisited: reliability, validity, and guidelines. J Clin Oncology 1984; 2: 187-193.

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Conflict of interest: None declared

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Not easy to define end-of-life care for people with dementia

Om Prakash
02 November 2011

To the editor,

Using the narratives of both the bereaved family members and the careprofessionals, Lawrence and her colleagues' (1) attempt to define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK, is commendable. The study is very important as medical practitioners dealing with patients with dementia are facing significant challenges, notleast within the realms of end-of-life care (2). However, some concerns persist.The study aimed to define the good end of life care for patients with dementia but the researchers ended up taking perspectives of the care professionals and family members only leaving patients. Due to this limitation, the authors have not been truly able to define the "good end of life" or the strategies to deliver to this neglected population. The article only explores the needs as perceived by the care givers and care professionals based on subjective account of the events and the possibility of the recall bias cannot be ruled out.

As pointed by authors due to small size of sample, it is difficult togeneralize the results of the study for the other populations like China and India. Moreover, authors do not clearly define why they included only those if the person with dementia for whom they have cared for have died in previous 2-6 months. The authors can give more details like how were the interviews conducted initially, what questions were framed which seem unexplained in the study giving an impression that the interviews were partly unstructured.

Nevertheless, the authors have tried well to explore the need for theprofessional expertise in dealing with the physical and unique emotional needs of the patients of dementia needing end-of-life care.

References:1.Lawrence V, Samsi K, Murray J, Harari D, Banerjee S. Dying well with dementia: qualitative examination of end-of-life care. Br J Psychiatry. 2011 Sep 22. [published online ahead of print]2.Livingston G, Leavey G, Manela M, Livingston D, Rait G, Sampson E, Bavishi S, Shahriyarmolki K, Cooper C. Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ.2010 Aug 18;341:c4184.

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Conflict of interest: None declared

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