Family visits in care homes

Bruce Walmsley & Lynne McCormack | Severe dementia: relational social engagement (RSE) during family visits | Aging & Mental Health Vol. 21 , Iss. 12,2017

Abstract:

Objective: Few studies have utilised observation to investigate retained awareness when individuals with severe dementia interact with family members. Seeking evidence of retained awareness in those with severe dementia, interactive family visits in care homes were observed and analysed.

Method: Five family groups (14 individuals) completed 10/15-minute video recorded family interactions. Speech and non-speech interactions were analysed using Thematic Analysis.

Results: One superordinate theme: Distinctive family bonds; overarched two subthemes, in-step and out-of-step describing positive and negative familial interactions. In-step interactions revealed family groups reciprocating social support, having fun together, and willing to go on the ride together. Out-of-step interactions characterised social frustration, non-reciprocity, and sidelining of members with dementia. Although awareness fluctuated, complex awareness was observed in the speech/non-speech expressions of those with dementia. In response, visitors appeared to treat those expressions and behaviours as understandable. Observed outcomes were out-of-step when visitors sought to retain the familiar and in-step when visitors sought to optimise all communication possibilities.

Conclusion: Video recorded family interactions and analysis revealed: (a) awareness was retained in the participants with severe dementia beyond assessed levels; and (b) Relational Social Engagement (RSE) occurred within family groups despite positive or negative interactions. Implications are discussed.

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Choice in end of life care

How the National End of Life Care Programme Board is delivering personalisation and choice in care for people at or near the end of life. | Department of Health

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This report sets out the progress the National End of Life Care Programme Board has made in implementing the government’s choice commitment.

The measures include:

  • supporting the roll-out of digital palliative and end of life care records to all areas by 2020
  • inspecting and rating NHS hospital and community services for end of life care
  • providing support to trusts to help them improve end of life care services
  • testing personal health budgets for people approaching the end of life to give them choice and control over their care
  • developing metrics to assess quality and experience in end of life care
  • working to change the nursing and medical undergraduate and postgraduate curricula to improve patient choice and quality of care

Full report: One Year On: The Government Response to the Review of Choice in End of Life Care

Continuation of non-essential medications in actively dying hospitalised patients

The objective of this analysis was to examine the use of 11 non-essential medications in actively dying patients | BMJ Supportive & Palliative Care

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This was a planned secondary analysis of data from the Best Practices for End-of-Life Care for Our Nation’s Veterans trial, a multicentre implementation trial of an intervention to improve processes of end-of-life care in inpatient settings. Supported with an electronic comfort care decision support tool, intervention included training hospital staff to identify actively dying patients, communicate the prognosis to patients/families and implement best practices of traditionally home-based hospice care. Data on medication use before and after intervention were derived from electronic medical records of 5476 deceased veterans.

Non-essential medications continue to be administered to actively dying patients. Discontinuation of these medications may be facilitated by interventions that enhance recognition and consideration of patients’ actively dying status.

Full reference: Williams, B.R., et al. (2017) Continuation of non-essential medications in actively dying hospitalised patients. BMJ Supportive & Palliative Care. Published Online First: 13 September 2017.

Death and dying in the UK

Death, dying and devolution | The University of Bath Institute for Policy Research

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The articles in this collection cover what happens before someone dies, including issues around palliative care and support for carers; what happens at death, including issues around the proper regulation of funerals and public financial support for the bereaved; and what happens to those who are left behind, including emotional support for those who have been bereaved and issues around managing the estates of those who have died.

The report reviews policy areas associated with death, dying and bereavement within the context of devolution. It focuses on the national and regional delegation of power, resources and authority across the UK and the implications of this for those who are dying, dead, or bereaved as well as those tasked with organising and running the services that support these groups of people.

The report can be downloaded here

What are families most grateful for after receiving palliative care?

Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive | BMC Palliative Care

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Image source: Ricardo Díaz – Flickr // CC BY-NC-ND 2.0

Qualitative exploratory study based on documentary analysis. Content analysis of 77 gratitude documents received over 8 years by a palliative home service in Odivelas, near Lisbon (Portugal) was undertaken, through an inductive approach and using investigator triangulation. Frequency of distinct categories was quantitatively defined.

Family carers show spontaneous gratitude for the professionalism and humanity found in palliative care. The relational component of care emerges as key to achieve a high quality care experience of palliative care homes service, and could be one indicator of quality of palliative care.

Full reference: Aparicio, M. et al. (2017) What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care. BMC Palliative Care. Published: 6 September 2017

How can primary care enhance end-of-life care for liver disease?

Qualitative study of general practitioners’ perceptions and experiences | BMJ Open

Liver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners’ (GPs) perceptions of their role in managing end-stage liver disease.

GPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients’ social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area.

Full reference: Standing, H. et al. (2017) How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners’ perceptions and experiences. BMJ Open. 7:e017106.

How well do we currently care for our dying patients in acute hospitals

The aim of this study was to evaluate quality of care provided to dying patients and their families in acute hospitals from the perspective of bereaved relatives | BMJ Supportive & Palliative Care

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Background: The National Care of the Dying Audit—Hospitals (NCDAH) is used as a method to evaluate care for dying patients in England. An additional component to the 2013/2014 audit was the Local Survey of Bereaved Relatives Views using the ‘Care Of the Dying Evaluation’ (CODE) questionnaire.

Conclusions: Adopting a postbereavement survey to NCDAH appears to be feasible, acceptable and a valuable addition. On the whole, the majority of participants reported good or excellent care. A small but significant minority, however, perceived poor quality of patient care with clear and timely communication urgently needed.

Full reference: Mayland, C.R. et al. (2017) How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives? BMJ Supportive & Palliative Care. Vol. 07 (Issue 03) pp. 316-325.