Quality of end-of-life care in patients with dementia compared to patients with cancer: A population-based register study

Martinsson, Lisa; Lundström, Staffan; Sundelöf, Johan

doi:10.1371/journal.pone.0201051

Cited by 45 publications

(40 citation statements)

References 22 publications

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“…Death from dementia was defined as one of the ICD-10 codes F01, F02, F03 and G30, including subgroups, as the underlying cause of death. The study group was a subgroup of a larger cohort of patients who had died from dementia or cancer regardless of place of death, previously examined by the authors [19].…”

Section: Planning and Settingmentioning

confidence: 99%

Better quality of end-of-life care for persons with advanced dementia in nursing homes compared to hospitals: a Swedish national register study

Martinsson

Lundström

Sundelöf³

2020

BMC Palliat Care

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Background: Hospitalisation of patients with advanced dementia is generally regarded as less preferable compared to care at home or in a nursing home. For patients with other diagnoses, young age has been associated with better end-of-life care. However, studies comparing the quality of palliative care for persons with advanced dementia in hospitals and nursing homes are scarce. The aim of this study was to investigate whether quality of end-of-life care for patients with dementia depends on age, gender and place of death. Methods: The Swedish Register of Palliative Care (SRPC) was used to identify patients who died from dementia in hospitals or nursing homes during a three-year period. The likelihood of death occurring at a hospital, based on age and gender differences, was calculated. Associations between 13 end-of-life care quality indicators collected from the SRPC and age, gender and place of care were examined in a logistic regression model. Results: Death at a hospital was associated with poorer quality of end-of-life care for 10 of the 13 measured outcomes when compared to death at a nursing home, and with better quality according to two of the outcomes. Death at a hospital was more common for men compared to women and for younger patients compared to older. Receiving fluids intravenously or via enteral tube in the last 24 h of life was strongly associated with death at a hospital. Women were more likely to have their oral health assessed and less likely to have pressure ulcers at death. Eight of 12 end-of-life care outcomes showed better results for the age group 65 to 84 years compared to those 85 years or older. Conclusions: Death in hospitals was associated with poorer quality of end-of-life care compared to death in nursing homes. Our data support the importance of advance care planning and individual assessments in nursing homes to avoid referral to hospitals during end of life. Despite established recommendations to avoid hospitalisation if possible, there were strong associations between younger age, male gender and hospitalisation in the end of life. Further studies are needed to investigate the role of socioeconomic factors in end-of-life care for this patient group.

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Section: Planning and Settingmentioning

confidence: 99%

Better quality of end-of-life care for persons with advanced dementia in nursing homes compared to hospitals: a Swedish national register study

Martinsson

Lundström

Sundelöf³

2020

BMC Palliat Care

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“…It aims to relieve suffering, taking physical, psychosocial, and spiritual needs into account in addition to the inclusion and support of next of kin [25]. Palliative care has been developed within care for terminal cancer patients, but is lacking in other contexts, such as nursing homes [26], and for other diagnoses, such as dementia [27]. This imbalance has led to a call from the World Health Organization [25] for interventions to improve palliative care for older people.…”

Section: Introductionmentioning

confidence: 99%

Measuring next of kin’s experience of participation in the care of older people in nursing homes

et al. 2020

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Background Lack of conceptual clarity and measurement methods have led to underdeveloped efforts to measure experience of participation in care by next of kin to older people in nursing homes. Objective We sought to assess the measurement properties of items aimed at operationalizing participation in care by next of kin, applied in nursing homes. Methods A total of 37 items operationalizing participation were administered via a questionnaire to 364 next of kin of older people in nursing homes. Measurement properties were tested with factor analysis and Rasch model analysis. Results The response rate to the questionnaire was 81% (n = 260). Missing responses per item varied between <0.5% and 10%. The 37 items were found to be two-dimensional, and 19 were deleted based on conceptual reasoning and Rasch model analysis. One dimension measured communication and trust (nine items, reliability 0.87) while the other measured collaboration in care (nine items, reliability 0.91). Items successfully operationalized a quantitative continuum from lower to higher degrees of participation, and were found to generally fit well with the Rasch model requirements, without disordered thresholds or differential item functioning. Total scores could be calculated based on the bifactor subscale structure (reliability 0.92). Older people (� 65 years) reported a higher degree of communication and trust and bifactor total scores than younger people (p < 0.05 in both cases). People with a specific contact person experienced a higher degree of participation in the two subscales and the bifactor total score (p < 0.05 in all three instances).

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“…For example, pain, shortness of breath and agitation are common symptoms or consequences of comorbidity that increase in people with dementia shortly before death [13]. Persons with dementia at the end of life suffer from a similar symptom burden to that of cancer patients but their symptom relief and end-of-life care is not as good [14][15][16].…”

Section: Introductionmentioning

confidence: 99%

End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes

Lundin¹,

Godskesen

2020

Preprint

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Background: Of the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore, the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life.Methods: The study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with thirteen nurses from twelve nursing homes in Sweden. The results were analysed using thematic content analysis.Results: The nurses described communicative, relational and organisational challenges. One major issue involved difficulties in communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons’ relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia. Conclusions: This study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not.

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Quality of end-of-life care in patients with dementia compared to patients with cancer: A population-based register study

Cited by 45 publications

References 22 publications

Better quality of end-of-life care for persons with advanced dementia in nursing homes compared to hospitals: a Swedish national register study

Better quality of end-of-life care for persons with advanced dementia in nursing homes compared to hospitals: a Swedish national register study

Measuring next of kin’s experience of participation in the care of older people in nursing homes

End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes

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