The attitudes of Chinese family caregivers of older people with dementia towards life sustaining treatments

Aim. This paper is a report of a study to examine attitudes towards life-sustaining treatment in family caregivers of older Chinese people with dementia. Background. Deferring decisions about life-sustaining treatments to surrogate decision-makers is common among older people with dementia. However, surrogate decision-makers frequently lack knowledge about disadvantages and benefits of treatments and do not understand the principles of surrogate decision-making. Method. A total of 51 Chinese family caregivers were interviewed during 2003 and 2004. The interview included an assessment of their knowledge about cardiopulmonary resuscitation and tube feeding, a questionnaire to assess their anticipated decisions for four treatments (cardiopulmonary resuscitation, artificial ventilation, tube feeding and antibiotic administration) if the older relative suffered critical illness or irreversible coma, and their comfort and certainty in making such decisions. Findings. Family caregivers displayed poor knowledge about life-sustaining treatments, with 30 (59%) and 13 (26%) unable to name any feature of cardiopulmonary resuscitation and tube feeding, respectively. Most relied on their own views in decision-making rather than on what they thought their relative would have wanted. Most family caregivers were reluctant to forgo treatments. Nursing home residence predicted family caregivers' willingness to forgo artificial ventilation for critical illness. Financial burden predicted inclination to forgo antibiotics for critical illness and irreversible coma, as well as tube feeding in irreversible coma. Conclusion. More dialogue and education are needed about end of life issues in the early phase of dementia. Nurses should be aware of the cultural implications of surrogate decision-making for Chinese family caregivers.