Preferences and Actual Treatment of Older Adults at the End of Life. A Mortality Follow‐Back Study

Pasman, H. Roeline W.; Kaspers, Pam J; Deeg, Dorly J. H.; Onwuteaka-Philipsen, Bregje D.

doi:10.1111/jgs.12450

Cited by 22 publications

(16 citation statements)

References 17 publications

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“…People with a known preference for receiving a treatment had a seven times higher chance of their preference being followed than people with a known preference for forgoing that treatment [166, 167]. …”

Section: Major Findingsmentioning

confidence: 99%

The Longitudinal Aging Study Amsterdam: cohort update 2016 and major findings

et al. 2016

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The Longitudinal Aging Study Amsterdam (LASA) is an ongoing longitudinal study of older adults in the Netherlands, which started in 1992. LASA is focused on the determinants, trajectories and consequences of physical, cognitive, emotional and social functioning. The study is based on a nationally representative sample of older adults aged 55 years and over. The findings of the LASA study have been reported in over 450 publications so far (see www.lasa-vu.nl). In this article we describe the background and the design of the LASA study, and provide an update of the methods. In addition, we provide a summary of the major findings from the period 2011-2015.

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Section: Major Findingsmentioning

confidence: 99%

The Longitudinal Aging Study Amsterdam: cohort update 2016 and major findings

et al. 2016

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“…One research approach using a population-based perspective is to obtain the views of proxies for the decedents using a key informant, such as a family caregiver, to give “voice” to the decedent’s experience of care. Studies using this approach have been published from the United States [10], the United Kingdom (UK) [11,12], Italy [13,14] and the Netherlands [15]. Most recently the first UK National Bereavement Survey (VOICES) 2011 [16] results were reported as well as a Netherlands study of older adults at the end of life [15].…”

Section: Introductionmentioning

confidence: 99%

“…Studies using this approach have been published from the United States [10], the United Kingdom (UK) [11,12], Italy [13,14] and the Netherlands [15]. Most recently the first UK National Bereavement Survey (VOICES) 2011 [16] results were reported as well as a Netherlands study of older adults at the end of life [15]. These surveys have all used similar methods to ask bereaved family members or someone close to the decedent relatively soon after the death about multiple domains of patient-focused, family-centred care that the decedent received.…”

Section: Introductionmentioning

confidence: 99%

Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: does location matter?

et al. 2014

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BackgroundImproving end-of-life care is an important international issue. Recently Nova Scotia researchers conducted a mortality follow-back survey to provide a population-based description of care provided to adults during their last 30 days of life as perceived by knowledgeable bereaved family members. Here we describe the relationship between the location where the decedent received the majority of care during their last 30 days and the informant’s perception of the extent of unmet need, as defined by multiple domains of patient-focused, family-centred care.MethodDeath certificate identified informants (next-of-kin) of eligible adults who died between June 2009 and May 2011, in Nova Scotia, Canada were invited to participate in a telephone interview based on the After-Death Bereaved Family Member Interview. Whether or not the informant expressed unmet need or concerns for six patient-focused, family-centred care domains were assessed in relation to the location where the majority of care occurred during the decedent’s last 30 days.Results1358 informants took part (25% response rate). Results of 1316 eligible interviews indicated home (39%) was the most common location of care, followed by long-term care (29%), hospital (23%) and hospital-based palliative-care units (9%). Unmet need ranged from 5.6% for dyspnea help to 66% for the emotional and spiritual needs of the family. Although the mean score for overall satisfaction was high (mean = 8.7 in 1–10 scale; SD 1.8), 57% were not completely satisfied. Compared to home, adjusted results indicated greater dissatisfaction with overall care and greater communication concerns in the hospital. Greater unmet need occurred at home for dyspnea. Less overall dissatisfaction and unmet need were expressed about care provided in long-term care facilities and hospital-based palliative-care units.ConclusionBereaved informants were generally highly satisfied with the decedent's care during their last 30 days but variations were evident. Overall, no one location stood out as exceptionally different in terms of perceived unmet need within each of the patient-focused, family-centred care domains. Communication in various forms and family emotional and spiritual support were consistently viewed as lacking in all locations and identified as targeted areas for impacting quality care at end of life.

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“…In another paper [4], the authors compare actual treatments with patient's preferences on starting or forgoing treatment at the end of life. They select two representative cohorts of: the older Dutch general population, and; people with known advanced directives.…”

Section: Evidences Base Clinical Trials a Short Non-systematic Reviewmentioning

confidence: 99%

Feeding and hydration in terminal stage patients

Ribera-Casado

2015

European Geriatric Medicine

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Preferences and Actual Treatment of Older Adults at the End of Life. A Mortality Follow‐Back Study

Abstract: Although concordance between preferred and actual treatment is high in older adults who prefer treatment and lower in people who prefer no treatment, making preferences for forgoing treatment known is useful because it increases the chance of treatments being forgone in those who wish so.

Cited by 22 publications

References 17 publications

The Longitudinal Aging Study Amsterdam: cohort update 2016 and major findings

The Longitudinal Aging Study Amsterdam: cohort update 2016 and major findings

Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: does location matter?

Feeding and hydration in terminal stage patients

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