The challenge of patients’unmet palliative care needs in the final stages of chronic illness.

Donna Fitzsimons, Deirdre Mullan, Julie Wilson, B Conway, B Corcoran, M Dempster, J Gamble, C Stewart, S Rafferty, M McMahon, J MacMahon, P Mulholland, P Stockdale, E Chew, L Hanna, J Brown, G Ferguson, D Fogarty

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    Abstract

    There is consensus in the literature that the end of life care for patients with chronic illness is suboptimal, but research on the specific needs of this population is limited. Aim : This study aimed to use a mixed methodology and case study approach to explore the palliative care needs of patients with a non-cancer diagnosis from the perspectives of the patient, their significant other and the clinical team responsible for their care. Patients (n = 18) had a diagnosis of either end-stage heart failure, renal failure or respiratory disease. Methods : The Short Form 36 and Hospital and Anxiety and Depression Questionnaire were completed by all patients. Unstructured interviews were (n = 35) were conducted separately with each patient and then their significant other. These were followed by a focus group discussion (n = 18) with the multiprofessional clinical team. Quantitative data were analysed using simple descriptive statistics and simple descriptive statistics. All qualitative data were taped, transcribed and analysed using Colaizzi's approach to qualitative analysis. Findings : Deteriorating health status was the central theme derived from this analysis. It led to decreased independence, social isolation and family burden. These problems were mitigated by the limited resources at the individual's disposal and the availability of support from hospital and community services. Generally resources and support were perceived as lacking. All participants in this study expressed concerns regarding the patients' future and some patients described feelings of depression or acceptance of the inevitability of imminent death. Conclusion : Patients dying from chronic illness in this study had many concerns and unmet clinical needs. Care teams were frustrated by the lack of resources available to them and admitted they were ill-equipped to provide for the individual's holistic needs. Some clinicians described difficulty in talking openly with the patient and family regarding the palliative nature of their treatment. An earlier and more effective implementation of the palliative care approach is necessary if the needs of patients in the final stages of chronic illness are to be adequately addressed.
    LanguageEnglish
    Pages313-322
    JournalPalliative Medicine
    Volume21
    Issue number4
    DOIs
    Publication statusPublished - Jun 2007

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    Palliative Care
    Chronic Disease
    Depression
    Social Isolation
    Terminal Care
    Social Welfare
    Focus Groups
    Health Status
    Renal Insufficiency
    Consensus
    Emotions
    Anxiety
    Heart Failure
    Interviews

    Cite this

    Fitzsimons, D., Mullan, D., Wilson, J., Conway, B., Corcoran, B., Dempster, M., ... Fogarty, D. (2007). The challenge of patients’unmet palliative care needs in the final stages of chronic illness. Palliative Medicine, 21(4), 313-322. https://doi.org/10.1177/0269216307077711
    Fitzsimons, Donna ; Mullan, Deirdre ; Wilson, Julie ; Conway, B ; Corcoran, B ; Dempster, M ; Gamble, J ; Stewart, C ; Rafferty, S ; McMahon, M ; MacMahon, J ; Mulholland, P ; Stockdale, P ; Chew, E ; Hanna, L ; Brown, J ; Ferguson, G ; Fogarty, D. / The challenge of patients’unmet palliative care needs in the final stages of chronic illness. In: Palliative Medicine. 2007 ; Vol. 21, No. 4. pp. 313-322.
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    title = "The challenge of patients’unmet palliative care needs in the final stages of chronic illness.",
    abstract = "There is consensus in the literature that the end of life care for patients with chronic illness is suboptimal, but research on the specific needs of this population is limited. Aim : This study aimed to use a mixed methodology and case study approach to explore the palliative care needs of patients with a non-cancer diagnosis from the perspectives of the patient, their significant other and the clinical team responsible for their care. Patients (n = 18) had a diagnosis of either end-stage heart failure, renal failure or respiratory disease. Methods : The Short Form 36 and Hospital and Anxiety and Depression Questionnaire were completed by all patients. Unstructured interviews were (n = 35) were conducted separately with each patient and then their significant other. These were followed by a focus group discussion (n = 18) with the multiprofessional clinical team. Quantitative data were analysed using simple descriptive statistics and simple descriptive statistics. All qualitative data were taped, transcribed and analysed using Colaizzi's approach to qualitative analysis. Findings : Deteriorating health status was the central theme derived from this analysis. It led to decreased independence, social isolation and family burden. These problems were mitigated by the limited resources at the individual's disposal and the availability of support from hospital and community services. Generally resources and support were perceived as lacking. All participants in this study expressed concerns regarding the patients' future and some patients described feelings of depression or acceptance of the inevitability of imminent death. Conclusion : Patients dying from chronic illness in this study had many concerns and unmet clinical needs. Care teams were frustrated by the lack of resources available to them and admitted they were ill-equipped to provide for the individual's holistic needs. Some clinicians described difficulty in talking openly with the patient and family regarding the palliative nature of their treatment. An earlier and more effective implementation of the palliative care approach is necessary if the needs of patients in the final stages of chronic illness are to be adequately addressed.",
    author = "Donna Fitzsimons and Deirdre Mullan and Julie Wilson and B Conway and B Corcoran and M Dempster and J Gamble and C Stewart and S Rafferty and M McMahon and J MacMahon and P Mulholland and P Stockdale and E Chew and L Hanna and J Brown and G Ferguson and D Fogarty",
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    Fitzsimons, D, Mullan, D, Wilson, J, Conway, B, Corcoran, B, Dempster, M, Gamble, J, Stewart, C, Rafferty, S, McMahon, M, MacMahon, J, Mulholland, P, Stockdale, P, Chew, E, Hanna, L, Brown, J, Ferguson, G & Fogarty, D 2007, 'The challenge of patients’unmet palliative care needs in the final stages of chronic illness.', Palliative Medicine, vol. 21, no. 4, pp. 313-322. https://doi.org/10.1177/0269216307077711

    The challenge of patients’unmet palliative care needs in the final stages of chronic illness. / Fitzsimons, Donna; Mullan, Deirdre; Wilson, Julie; Conway, B; Corcoran, B; Dempster, M; Gamble, J; Stewart, C; Rafferty, S; McMahon, M; MacMahon, J; Mulholland, P; Stockdale, P; Chew, E; Hanna, L; Brown, J; Ferguson, G; Fogarty, D.

    In: Palliative Medicine, Vol. 21, No. 4, 06.2007, p. 313-322.

    Research output: Contribution to journalArticle

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    T1 - The challenge of patients’unmet palliative care needs in the final stages of chronic illness.

    AU - Fitzsimons, Donna

    AU - Mullan, Deirdre

    AU - Wilson, Julie

    AU - Conway, B

    AU - Corcoran, B

    AU - Dempster, M

    AU - Gamble, J

    AU - Stewart, C

    AU - Rafferty, S

    AU - McMahon, M

    AU - MacMahon, J

    AU - Mulholland, P

    AU - Stockdale, P

    AU - Chew, E

    AU - Hanna, L

    AU - Brown, J

    AU - Ferguson, G

    AU - Fogarty, D

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    N2 - There is consensus in the literature that the end of life care for patients with chronic illness is suboptimal, but research on the specific needs of this population is limited. Aim : This study aimed to use a mixed methodology and case study approach to explore the palliative care needs of patients with a non-cancer diagnosis from the perspectives of the patient, their significant other and the clinical team responsible for their care. Patients (n = 18) had a diagnosis of either end-stage heart failure, renal failure or respiratory disease. Methods : The Short Form 36 and Hospital and Anxiety and Depression Questionnaire were completed by all patients. Unstructured interviews were (n = 35) were conducted separately with each patient and then their significant other. These were followed by a focus group discussion (n = 18) with the multiprofessional clinical team. Quantitative data were analysed using simple descriptive statistics and simple descriptive statistics. All qualitative data were taped, transcribed and analysed using Colaizzi's approach to qualitative analysis. Findings : Deteriorating health status was the central theme derived from this analysis. It led to decreased independence, social isolation and family burden. These problems were mitigated by the limited resources at the individual's disposal and the availability of support from hospital and community services. Generally resources and support were perceived as lacking. All participants in this study expressed concerns regarding the patients' future and some patients described feelings of depression or acceptance of the inevitability of imminent death. Conclusion : Patients dying from chronic illness in this study had many concerns and unmet clinical needs. Care teams were frustrated by the lack of resources available to them and admitted they were ill-equipped to provide for the individual's holistic needs. Some clinicians described difficulty in talking openly with the patient and family regarding the palliative nature of their treatment. An earlier and more effective implementation of the palliative care approach is necessary if the needs of patients in the final stages of chronic illness are to be adequately addressed.

    AB - There is consensus in the literature that the end of life care for patients with chronic illness is suboptimal, but research on the specific needs of this population is limited. Aim : This study aimed to use a mixed methodology and case study approach to explore the palliative care needs of patients with a non-cancer diagnosis from the perspectives of the patient, their significant other and the clinical team responsible for their care. Patients (n = 18) had a diagnosis of either end-stage heart failure, renal failure or respiratory disease. Methods : The Short Form 36 and Hospital and Anxiety and Depression Questionnaire were completed by all patients. Unstructured interviews were (n = 35) were conducted separately with each patient and then their significant other. These were followed by a focus group discussion (n = 18) with the multiprofessional clinical team. Quantitative data were analysed using simple descriptive statistics and simple descriptive statistics. All qualitative data were taped, transcribed and analysed using Colaizzi's approach to qualitative analysis. Findings : Deteriorating health status was the central theme derived from this analysis. It led to decreased independence, social isolation and family burden. These problems were mitigated by the limited resources at the individual's disposal and the availability of support from hospital and community services. Generally resources and support were perceived as lacking. All participants in this study expressed concerns regarding the patients' future and some patients described feelings of depression or acceptance of the inevitability of imminent death. Conclusion : Patients dying from chronic illness in this study had many concerns and unmet clinical needs. Care teams were frustrated by the lack of resources available to them and admitted they were ill-equipped to provide for the individual's holistic needs. Some clinicians described difficulty in talking openly with the patient and family regarding the palliative nature of their treatment. An earlier and more effective implementation of the palliative care approach is necessary if the needs of patients in the final stages of chronic illness are to be adequately addressed.

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