‘I'll be in a safe place’: a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care

Henson, Lesley A.; Higginson, Irene J; Daveson, Barbara A; Ellis‐Smith, Clare; Koffman, Jonathan; Morgan, Myfanwy; Gao, Wei

doi:10.1136/bmjopen-2016-012134

Cited by 49 publications

(43 citation statements)

References 41 publications

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“…For some cancer patients and their families, the hospital ward may provide a sense of security and medical competence [15]. A desire to be discharged to die at home may not come until death is imminent, leaving little time for nurses and physicians to complete the multiple tasks necessary in order for the transfer to be realised [16].…”

Section: Discussionmentioning

confidence: 99%

Cancer patients hospitalised in the last week of life risk insufficient care quality – a population-based study from the Swedish Register of Palliative Care

et al. 2019

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Background: One-quarter of all cancer deaths in Sweden occur in hospitals. If the place of death affects the quality of end-of-life (EOL) is largely unknown. Methods: This population-based, retrospective study included all adults cancer deaths reported to the Swedish Register of Palliative Care in 2011-2013 (N ¼ 41,729). Hospital deaths were compared to deaths occurring in general or specialised palliative care, or in nursing homes with respect to care quality indicators in the last week of life. Odds ratios (OR) with 95% confidence intervals (CI) were calculated with specialised palliative home care as reference.Results: Preferred place of death was unknown for 63% of hospitalised patients and consistent with the actual place of death in 25% compared to 97% in palliative home care. Hospitalised patients were less likely to be informed when death was imminent (OR: 0.3; CI: 0.28-0.33) as were their families (OR: 0.51; CI: 0.46-0.57). Validated screening tools were less often used in hospitals for assessment of pain (OR: 0.32; CI: 0.30-0.34) or other symptoms (OR: 0.31; CI: 0.28-0.34) despite similar levels of EOL symptoms. Prescriptions of as needed drugs against anxiety (OR: 0.27; CI: 0.24-0.30), nausea (OR: 0.19; CI: 0.17-0.21), or pulmonary secretions (OR: 0.29; CI: 0.26-0.32) were less prevalent in hospitals. Bereavement support was offered after 57% of hospital deaths compared to 87-97% in palliative care units and 72% in nursing homes. Conclusions: Dying in hospital was associated with inferior end-of-life care quality among cancer patients in Sweden. ARTICLE HISTORY

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Section: Discussionmentioning

confidence: 99%

Cancer patients hospitalised in the last week of life risk insufficient care quality – a population-based study from the Swedish Register of Palliative Care

et al. 2019

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“…Data on the quality of care is vital here, as home is only able to be a choice if services meet individual needs and are of good quality. As Shakespeare said in The Taming of the Shrew “There's small choice in rotten apples.” Feeling unsafe at home is emerging as a leading reason for people to seek care in hospital [ 35 ].…”

Section: Discussionmentioning

confidence: 99%

Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries

Daveson²,

et al. 2017

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BackgroundAchieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death.MethodsWe recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors.ResultsOne hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40–9.90) and living with someone (OR 2.19, 1.33–3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14–5.03). Conversely, functional independence (OR 1.05, 1.04–1.06) and valuing quality of life (OR 3.11, 2.89–3.36) were associated with dying at home. There was a mismatch between preferences and achievements – of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference.ConclusionAlthough home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply ‘achieved preferences’.Electronic supplementary materialThe online version of this article (10.1186/s12877-017-0648-4) contains supplementary material, which is available to authorized users.

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“…Therefore, unless we can provide high-quality end of life care to meet a patient’s lower level (e.g., physical) needs across all available settings, the preferred place of care and death do not have a real meaning to patients and families. In fact, patients choose a hospital as their preferred setting for the end of life care because they feel that the hospital is safer than other care settings, e.g., their own home or usual residence [ 61 ]. In other words, patients do not always feel safe at home or that care need can be best met at home—this, per se, indicates service gaps.…”

Section: Discussionmentioning

confidence: 99%

A Population-Based Conceptual Framework for Evaluating the Role of Healthcare Services in Place of Death

et al. 2018

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Background: There is a significant geographical disparity in place of death. Socio-demographic and disease-related variables only explain less than a quarter of the variation. Healthcare service factors may account for some (or much) of the remaining variation but their effects have never been systematically evaluated, partly due to the lack of a conceptual framework. This study aims to propose a population-based framework to guide the evaluation of the role of the healthcare service factors in place of death. Methods: Review and synthesis of health service models that include the impact of a service component on either place of death/end of life care outcomes or service access/utilization. Results: The framework conceptualizes the impact of healthcare services on the place of death as starting from the end of life care policies that in turn influence service commissioning and shape healthcare service characteristics, including service type, service capacity—facilities, service location, and workforce, through which service utilization and ultimately place of death are affected. Patient socio-demographics, disease-related variables, family and community support and social care also influence place of death, but they are not the focus of this framework and therefore are grouped as needs and other environmental factors. Information on service utilization, together with the place of death, creates loop feedback to inform policy and service commission. Conclusions: The framework provides guidance for analysis aiming to understand the role of healthcare services in place of death. It aids the interpretation of results in the light of existing knowledge and potentially identifies service factors that can be addressed to improve end of life care.

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‘I'll be in a safe place’: a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care

Cited by 49 publications

References 41 publications

Cancer patients hospitalised in the last week of life risk insufficient care quality – a population-based study from the Swedish Register of Palliative Care

Cancer patients hospitalised in the last week of life risk insufficient care quality – a population-based study from the Swedish Register of Palliative Care

Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries

A Population-Based Conceptual Framework for Evaluating the Role of Healthcare Services in Place of Death

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