Dying at home: why not? The views of community nurses on why cancer patients may not be able to achieve a home death

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Abstract

Background: It is acknowledged that between 50-75% of those with cancer and more than 50% of adults (if diagnosed with a terminal illness) would prefer to die at home. Although the introduction of initiatives such as the UK Government’s End of Life Care Programme is intended to promote patient choice at this time, more than a quarter of those with a terminal illness do not die at home. A gap clearly exists between patients’ preferences and their actual place of death that is poorly understood. Various influencing factors have been suggested including local out of hours services, a cancer diagnosis and the ability of families to care. This study sought to explore the topic from the perspective of community nurses, in an attempt to identify factors locally, which might result in a change in decision away from a preferred home death for people with cancer. Methodology: As the study sought to explore personal perspectives on the topic, a qualitative methodology was adopted. Data collection was through focus groups, which enabled group discussion and interaction, and allowed participants to use their own frames of reference. A purposive sample of community Macmillan nurses and district nurses who could draw on examples from their practice in a discussion around place of death in cancer were invited to take part. Nineteen nurses from two primary care trusts in the north west of England participated in two audio taped focus groups. Data were analysed for emerging themes using thematic analysis. Results and Discussion: Two main themes emerged, carer breakdown and service provision. However contributory factors were identified including: delays in provision of services, unrealistic expectations of patients, carers and hospital staff, illness duration and patients’ perceptions of their carer’s abilities. This paper discusses the results and explores potential reasons for the findings.
Original languageEnglish
Pages (from-to)601
JournalPalliative Medicine
Volume22
Issue numbersupp2
DOIs
Publication statusPublished - Jun 2008

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Nurses
Caregivers
Aptitude
Focus Groups
Neoplasms
Terminal Care
Patient Preference
England
Primary Health Care

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title = "Dying at home: why not? The views of community nurses on why cancer patients may not be able to achieve a home death",
abstract = "Background: It is acknowledged that between 50-75{\%} of those with cancer and more than 50{\%} of adults (if diagnosed with a terminal illness) would prefer to die at home. Although the introduction of initiatives such as the UK Government’s End of Life Care Programme is intended to promote patient choice at this time, more than a quarter of those with a terminal illness do not die at home. A gap clearly exists between patients’ preferences and their actual place of death that is poorly understood. Various influencing factors have been suggested including local out of hours services, a cancer diagnosis and the ability of families to care. This study sought to explore the topic from the perspective of community nurses, in an attempt to identify factors locally, which might result in a change in decision away from a preferred home death for people with cancer. Methodology: As the study sought to explore personal perspectives on the topic, a qualitative methodology was adopted. Data collection was through focus groups, which enabled group discussion and interaction, and allowed participants to use their own frames of reference. A purposive sample of community Macmillan nurses and district nurses who could draw on examples from their practice in a discussion around place of death in cancer were invited to take part. Nineteen nurses from two primary care trusts in the north west of England participated in two audio taped focus groups. Data were analysed for emerging themes using thematic analysis. Results and Discussion: Two main themes emerged, carer breakdown and service provision. However contributory factors were identified including: delays in provision of services, unrealistic expectations of patients, carers and hospital staff, illness duration and patients’ perceptions of their carer’s abilities. This paper discusses the results and explores potential reasons for the findings.",
author = "M. O'Brien and B. Jack",
year = "2008",
month = "6",
doi = "10.1177/0269216308090402",
language = "English",
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pages = "601",
journal = "Palliative Medicine",
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AU - Jack, B.

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N2 - Background: It is acknowledged that between 50-75% of those with cancer and more than 50% of adults (if diagnosed with a terminal illness) would prefer to die at home. Although the introduction of initiatives such as the UK Government’s End of Life Care Programme is intended to promote patient choice at this time, more than a quarter of those with a terminal illness do not die at home. A gap clearly exists between patients’ preferences and their actual place of death that is poorly understood. Various influencing factors have been suggested including local out of hours services, a cancer diagnosis and the ability of families to care. This study sought to explore the topic from the perspective of community nurses, in an attempt to identify factors locally, which might result in a change in decision away from a preferred home death for people with cancer. Methodology: As the study sought to explore personal perspectives on the topic, a qualitative methodology was adopted. Data collection was through focus groups, which enabled group discussion and interaction, and allowed participants to use their own frames of reference. A purposive sample of community Macmillan nurses and district nurses who could draw on examples from their practice in a discussion around place of death in cancer were invited to take part. Nineteen nurses from two primary care trusts in the north west of England participated in two audio taped focus groups. Data were analysed for emerging themes using thematic analysis. Results and Discussion: Two main themes emerged, carer breakdown and service provision. However contributory factors were identified including: delays in provision of services, unrealistic expectations of patients, carers and hospital staff, illness duration and patients’ perceptions of their carer’s abilities. This paper discusses the results and explores potential reasons for the findings.

AB - Background: It is acknowledged that between 50-75% of those with cancer and more than 50% of adults (if diagnosed with a terminal illness) would prefer to die at home. Although the introduction of initiatives such as the UK Government’s End of Life Care Programme is intended to promote patient choice at this time, more than a quarter of those with a terminal illness do not die at home. A gap clearly exists between patients’ preferences and their actual place of death that is poorly understood. Various influencing factors have been suggested including local out of hours services, a cancer diagnosis and the ability of families to care. This study sought to explore the topic from the perspective of community nurses, in an attempt to identify factors locally, which might result in a change in decision away from a preferred home death for people with cancer. Methodology: As the study sought to explore personal perspectives on the topic, a qualitative methodology was adopted. Data collection was through focus groups, which enabled group discussion and interaction, and allowed participants to use their own frames of reference. A purposive sample of community Macmillan nurses and district nurses who could draw on examples from their practice in a discussion around place of death in cancer were invited to take part. Nineteen nurses from two primary care trusts in the north west of England participated in two audio taped focus groups. Data were analysed for emerging themes using thematic analysis. Results and Discussion: Two main themes emerged, carer breakdown and service provision. However contributory factors were identified including: delays in provision of services, unrealistic expectations of patients, carers and hospital staff, illness duration and patients’ perceptions of their carer’s abilities. This paper discusses the results and explores potential reasons for the findings.

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