Having plenty of supportive relatives increases fear of dying

March 29, 2010

Having a large number of supportive relatives increases the fear of dying among the elderly from ethnic minority groups, suggests research in Postgraduate Medical Journal.

This runs counter to the perception that a network of supportive informal family carers eases the fear of death, say the authors.

And it has important implications for health service provision as fears around death are one of the factors driving the rising numbers of people dying in hospital rather than at home.

The research team tested attitudes to death and dying in 1000 people aged 65 and older, made up of an ethnically diverse sample of the population and a sample of people virtually all of whom were White British and from similar social, educational, and economic backgrounds.

All the interviewees were drawn from Office for National Statistics (ONS) Omnibus Surveys (predominantly White British) and Ethnibus Surveys (ethnically diverse) in Britain.

They were asked directly how much they feared dying, the manner of death, losing control over their death, and suffering pain. Their responses were scored on a five point scale.

They also responded to 35 questions about older people's quality of life, using a validated questionnaire (OPQOL).

Almost a third of Ethnibus respondents lived in households with four or more adults compared with just 1% of the ONS sample. And just one in 20 Ethnibus respondents lived alone compared with almost half of the ONS sample.

Two thirds of the Ethnibus sample had large family networks of four or more relatives who were prepared to help out practically compared with one in three among the ONS sample.

The analysis showed that more than half of the Ethnibus sample respondents had the worst scores for death and dying and quality of life.

Better reduced levels of fear in both sample groups, but those in the Ethnibus sample had significantly greater levels of fear than those in the ONS sample.

More than three out of four (77%) of the Ethnibus sample, which included people of Indian, Pakistani, Black Caribbean, and Chinese ethnicities, had up to four extreme fears around death. These included fear of the mode of death, fear of not being able to control their death, fear of dying itself, and fear of being in pain.

Having more to help out with practical tasks, if needed, increased fears in three of these four domains.

Poor health, a longstanding illness, and difficulty walking 400 yards were also associated with an increased fear of death among this sample.

Older age reduced fears around death, but only in the ONS sample.

The authors point out that fewer than a fifth of deaths in most developed countries, including the UK, occur at home, and on the basis of current trends fewer than one in 10 will die at home by 2030.

One of the key factors driving this rising trend is fear about the quality of care, and symptom and pain relief at the end of life, they say.

And they conclude: "A shift in the place of death is only likely when high quality community palliative care services are uniformly accessible and people's fears are addressed."

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