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

Talking about death and dying is taboo in many parts of the world. So it’s no wonder many people avoid talking about it. Or they struggle to find the right words | The Conversation

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Euphemisms have their place. But being able to talk openly (and clearly) about death and dying is important as it helps normalise death and avoids confusion.

If health professionals use euphemisms, they need to consider whether patients really understand what they’re trying to say.

And normalising death and dying (and communicating it) helps us prepare for the death of someone we love, or to find the right language to make the best choices for end-of-life care or for a funeral.

Read the full blog post here

People who are dying should be asked about their spiritual beliefs

NICE has published new guidance calling on healthcare professionals to ask adults in the final days of life about their religious or spiritual beliefs.

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Cultural preferences and spiritual beliefs should be included in discussions about the care a person, and those close to them, want to receive, says NICE.

Knowing if someone holds a religious belief can be important for providing the care they desire. For example, someone who is Catholic may wish to receive the last prayers and ministrations.

The 2016 End of Life Care Audit reported nearly half of all deaths in England occurred in hospital. Spiritual wishes were only documented for one in 7 people who were able to communicate their desires.

Read the full overview here

Read the full guidance here

Podcast: Supporting relatives and carers at the end of a patient’s life

Berry, M. et al. (2017) BMJ. 356:j367

  • Effective support can make a considerable difference to the relatives of people who are dying; helping to allay fears, reducing stress and anxiety, and minimising suffering in bereavement.

  • Clear communication around practical considerations (death certificate, funeral arrangements, information around autopsy, etc) and psychosocial support (normalising grief, cultural and spiritual considerations) is key.

  • Doctors need to familiarise themselves with local systems and protocols. Written communication in addition to verbal is beneficial.

All doctors, irrespective of their specialty or the setting in which they work, will care for patients who die. Around half of all deaths occur in hospitals.1 Evidence suggests that the quality of communication around this process is poorer in hospitals than in other settings, according to responses from relatives who have experienced bereavement.2 Over half of NHS complaints concern care of the dying.3

This article discusses how to best support relatives and carers at the end of a patient’s life. While the focus is on the hospital setting, the principles are applicable to community and care home settings. In this article, “relative” encompasses family members, care givers, and those close to the patient. The article presumes throughout that the patient has given consent for information to be shared with relatives (Box 1).

Read the full article here

End of life care for infants, children and young people

NICE has published new NICE guidance: End of life care for infants, children and young people with life-limiting conditions: planning and management (NG61).

This guideline covers the planning and management of end of life and palliative care in for infants, children and young people (aged 0–17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.

Additional link: NICE news report

New go-to website for resources and learning in palliative and end of life care

Nicola Spencer introduces the enhanced Ambitions for Palliative and End of Life Care website which will be the new go-to place for resources and learning | NHS England

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Struggling to keep up to date and informed on changes impacting on palliative and end of life care? Not sure where to find the latest resources and improvement examples?

Then you will be pleased to hear we have launched a tailor made national End of Life Care (EoLC) Knowledge Hub providing you with a ‘one stop shop’ of palliative and EoLC information.

This hub provides anyone involved in the commissioning or provision of palliative and end of life care with a quick and easy way to source information, including helpful tools and resources to drive delivery of the Ambitions for Palliative and End of Life Care – a national framework for local action.

Read the full overview here

Find the website here

Community based end of life care commissioning

Public Health England has published Public perceptions and experiences of community-based end of life care initiatives: a qualitative research report.

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This report is aimed at commissioners of end of life care services to support new ways of commissioning through using public health approaches to build compassionate communities. The key objectives of the research were to understand the awareness and knowledge of community end of life care across a number of key audiences; their perceptions of community end of life care; their experiences of end of life care and any community initiatives; and any improvements that could be made to community end of life care.

Stated values and treatment preferences for end-of-life care: results of a multicentre survey

Heyland, D.K. et al. BMJ Supportive & Palliative Care. Published Online: 6 October 2016

Background: Medical orders for the use of life-supports should be informed by patients’ values and treatment preferences. The purpose of this study was to explore the internal consistency of patients’ (or their family members’) stated values, and the relationship between these values and expressed preferences.

Methods: We conducted a prospective study in 12 acute care hospitals in Canada. We administered a questionnaire to elderly patients and their family members about their values related to end-of-life (EOL) care, treatment preferences and decisional conflict.

Results: Of 513 patients and 366 family members approached, 278 patients (54%) and 225 family members (61%) consented to participate. Participants’ most important stated values were to be comfortable and suffer as little as possible, to have more time with family, to avoid being attached to machines and tubes and that death not be prolonged. The least important stated value was that life be preserved. Based on prespecified expected associations between the various values measured, there were inconsistencies in participants’ expressed value statements. With few exceptions, participants’ expressed values were not associated with expected corresponding treatment preferences. Of the 109 (40%) patients and 95 (42%) family members who had made decisions about use of life-supports, 68 (56%) patients and 60 (59%) family members had decisional conflict.

Conclusions: Decision-making regarding medical treatments at the EOL is inadequate. To reduce decisional conflict, patients and their families need more support to clarify their values and ensure that their preferences are grounded in adequate understanding of their illness and treatment options.

Read the full article here