End of life care in a care home

About a fifth of all people who die in any one year in England die in a care home. This means that training for all staff in end of life care planning, and for some in palliative care is a priority.

Most care home residents are over 85 years old, with an average life expectancy of less than two and a half years. This means that caring for people approaching the end of their lives must be a large part of what care homes, with or without specialist nursing care, must provide.

The Social Care Institute for Excellence has produced, End of life care in a care home which includes a Checklist for owners and managers.

In addition, My Home Life has developed a step-by-step guide to good practice in end-of-life-care

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Passed away, kicked the bucket, pushing up daisies – the many ways we don’t talk about death

Improving hospital-based end of life care processes and outcomes

A systematic review was undertaken to examine the quantity and quality of data-based research aimed at improving the (a) processes and (b) outcomes associated with delivering end-of-life care in hospital settings | BMC Palliative Care

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A total of 416 papers met eligibility criteria. The number increased by 13% each year (p < 0.001). Most studies were descriptive (n = 351, 85%), with fewer measurement (n = 17) and intervention studies (n = 48; 10%). Only 18 intervention studies (4%) met EPOC design criteria. Most reported benefits for end-of-life processes including end-of-life discussions and documentation (9/11). Impact on end-of-life outcomes was mixed, with some benefit for psychosocial distress, satisfaction and concordance in care (3/7).

More methodologically robust studies are needed to evaluate the impact of interventions on end-of-life processes, including whether changes in processes translate to improved end-of-life outcomes. Interventions which target both the patient and substitute decision maker in an effort to achieve these changes would be beneficial.

Full reference: Waller, A. et al. (2017) Improving hospital-based end of life care processes and outcomes: a systematic review of research output, quality and effectiveness. BMC Palliative Care. Published: 19 May 2017

Inappropriate prescribing of preventative medication in patients with life-limiting illness

Systematic review  to examine the methods used to identify inappropriate prescribing of preventative medication in patients with life-limiting illness and to detail the nature of medications prescribed | BMJ Supportive & Palliative Care

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Objectives: To systematically review the literature to examine the methods used to identify inappropriate prescribing of preventative medication in patients with life-limiting illness and to detail the nature of medications prescribed.

Conclusions: Patients with life-limiting illnesses are prescribed preventative medications considered inappropriate in the context of diminished life expectancy. The way in which preventative medication appropriateness is assessed in patients with life-limiting illness varies considerably—with some methodologies utilising criteria previously developed for elderly populations. Given this lack of standardisation, improving the prescribing in this context requires an approach that is specifically designed and validated for populations with life-limiting illness.

Full reference: Todd, A. et al. (2017) Inappropriate prescribing of preventative medication in patients with life-limiting illness: a systematic review. BMJ Supportive & Palliative Care. 7(2):113-121.

Adjusting to bodily decline at the end-of-life

The purpose of this study was to better understand the lived experience of functional decline for people with advanced cancer living at home | BMJ Supportive & Palliative Care

Context: People with advanced cancer experience bodily change resulting in debilitating functional decline. Although inability to participate in everyday activities (occupation) contributes to profound suffering, limited research has examined the relationship between altered bodily experience (embodiment) and functional ability.

Conclusions: This study highlights the role active participation in everyday activities plays in mediating adjustment to functional decline. These findings challenge us to look beyond palliation of physical symptoms and psychospiritual care as ends in themselves. Symptom control and palliation should be viewed as mechanisms to optimise active participation in essential and valued activities.

Full reference: Morgan, D.D., et al. (2017) Living actively in the face of impending death: constantly adjusting to bodily decline at the end-of-life

Deaths from dementia set to quadruple by 2040

The number of people who will die from dementia could almost quadruple over the next 20 years, suggests a study published in BMC Medicine | Story via OnMedica

hospital-bed-315869_1280Researchers analysed mortality statistics for England and Wales from 2006 to 2014 to estimate the prevalence of palliative care need in the population.

By using explicit assumptions about change in disease prevalence over time and official mortality forecasts, they modelled palliative care need up to 2040 as well as making projections for dementia, cancer and organ failure.

They calculated that by 2040, annual deaths in England and Wales could rise by at least 25.4% from 501,424 in 2014 to 628,659 in 2040.  If age and sex-specific percentages with palliative care needs remained the same as in 2014, the number of people requiring palliative care could grow by 25% from 375,398 to 469,305 people a year.

However, if the upward trend observed from 2006 to 2014 continued, they said, the increase could be as much as 47% more people needing palliative care by 2040 in England and Wales.

In addition, disease-specific projections showed that dementia (increasing from 59,199 to 219,409 deaths/year by 2040) and cancer (increase from 143,638 to 208,636 deaths by 2040) would be the main drivers of the growing need.

The authors concluded: ‘Our analysis indicates that palliative care need will grow far more over the next 25 years than previously expected’.

Full reference: Etkind, S. N et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine 2017 15:102.

Facilitators & barriers of palliative care in the neonatal unit

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Kilcullen, M. & Ireland, S. Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery. BMC Palliative Care | Published online: 11 May 2017

Background: Neonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision should include identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressed while also enhancing facilitators. The current study qualitatively explored perceptions of neonatal nurses about facilitators and barriers to delivery of palliative care and also the impact of the regional location of the unit.

Conclusions: This study identified and explored facilitators and barriers in the delivery of quality palliative care for neonates in a regional tertiary setting. Themes identified suggested that a strengths-approach, which engages and amplifies facilitating factors while identified barriers are addressed or minimized, would be successful in supporting quality palliative care provision in the neonatal care setting. Study findings will be used to inform clinical education and practice.

Read the full article here