End-of-life care and preferences for place of death among the oldest old: results of a population-based survey using VOICES-Short Form.

BACKGROUND: End-of-life care (EOLC) is a key component in care of older people. However, evidence suggests that the oldest old (>85 years) are less likely to access specialist EOLC. OBJECTIVE: The study's objective was to explore experiences of EOLC among the oldest old and determine their reported preference for place of death. DESIGN: The study involved a self-completion postbereavement survey. METHODS: A census was taken of deaths registered between October 2009 and April 2010 in two health districts, identified from death certificates. Views of Informal Carers-Evalution of Service (VOICES)-Short Form was sent to each informant (n=1422, usually bereaved relative) 6 to 12 months after the death. RESULTS: Of 473 (33%) who responded, 48% of decedents were age 85 or over. There were no age differences in reported care quality in the last three months, but in the last two days the oldest old were reported to receive poorer relief of nonpain symptoms and less emotional and spiritual support. Compared to people under age 85, the over 85s were less likely to be reported to know they were dying, to have a record of their preferences for place of death, to die in their preferred place, to have enough choice about place of death-and more likely to be reported to have had unwanted treatment decisions. Being over 85 years was associated with a reduction in the odds of home death (OR=0.36); failure to ascertain and record preference for place of death contributed to this. CONCLUSIONS: Age-associated disparity exists in care provided in the last two days and the realization of preferences.

End-of-life care and achieving preferences for place of death in England: results of a population-based survey using the VOICES-SF questionnaire.

BACKGROUND/AIM: Health policy places emphasis on enabling patients to die in their place of choice, and increasing the proportion of home deaths. In this article, we seek to explore reported preferences for place of death and experiences of care in a population-based sample of deaths from all causes. DESIGN: Self-completion post-bereavement survey. SETTING/PARTICIPANTS: Census of deaths registered in two health districts between October 2009 and April 2010. Views of Informal Carers - Evaluation of Services Short Form was sent to each informant (n = 1422; usually bereaved relative) 6-12 months post-bereavement. RESULTS: Response was 33%. In all, 35.7% of respondents reported that the deceased said where they wanted to die, and 49.3% of these were reported to achieve this. Whilist 73.9% of those who were reported to have a preference cited home as the preferred place, only 13.3% of the sample died at home. Cancer patients were more likely to be reported to achieve preferences than patients with other conditions (p < .01). Being reported to have a record of preferences for place of death increased the likelihood of dying at home (odds ratio = 22.10). When rating care in the last 2 days, respondents were more likely to rate 'excellent' or 'good' for nursing care (p < .01), relief of pain (p < .01) and other symptoms (p < .01), emotional support (p < .01) and privacy of patient's environment (p < .01) if their relative died in their preferred place. CONCLUSIONS: More work is needed to encourage people to talk about their preferences at the end of life: this should not be restricted to those known to be dying. Increasing knowledge and achievement of preferences for place of death may also improve end-of-life care.

Participant recruitment in sensitive surveys: a comparative trial of 'opt in' versus 'opt out' approaches.

BACKGROUND: Although in health services survey research we strive for a high response rate, this must be balanced against the need to recruit participants ethically and considerately, particularly in surveys with a sensitive nature. In survey research there are no established recommendations to guide recruitment approach and an 'opt-in' system that requires potential participants to request a copy of the questionnaire by returning a reply slip is frequently adopted. However, in observational research the risk to participants is lower than in clinical research and so some surveys have used an 'opt-out' system. The effect of this approach on response and distress is unknown. We sought to investigate this in a survey of end of life care completed by bereaved relatives. METHODS: Out of a sample of 1422 bereaved relatives we assigned potential participants to one of two study groups: an 'opt in' group (n=711) where a letter of invitation was issued with a reply slip to request a copy of the questionnaire; or an 'opt out' group (n=711) where the survey questionnaire was provided alongside the invitation letter. We assessed response and distress between groups. RESULTS: From a sample of 1422, 473 participants returned questionnaires. Response was higher in the 'opt out' group than in the 'opt in' group (40% compared to 26.4%: χ(2) =29.79, p-value<.01), there were no differences in distress or complaints about the survey between groups, and assignment to the 'opt out' group was an independent predictor of response (OR=1.84, 95% CI: 1.45-2.34). Moreover, the 'opt in' group were more likely to decline to participate (χ(2)=28.60, p-value<.01) and there was a difference in the pattern of questionnaire responses between study groups. CONCLUSION: Given that the 'opt out' method of recruitment is associated with a higher response than the 'opt in' method, seems to have no impact on complaints or distress about the survey, and there are differences in the patterns of responses between groups, the 'opt out' method could be recommended as the most efficient way to recruit into surveys, even in those with a sensitive nature.