"I'm just waiting...": an exploration of the experience of living and dying with primary malignant glioma

Jennifer Anne Marshall Philip, Anna Collins, Caroline Anne Brand, Gaye E Moore, Carrie Lethborg, Vijaya Sundararajan, Michael Murphy, Michelle E Gold

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24 Citations (Scopus)

Abstract

Purpose: Referral to supportive and palliative care services for people with high-grade primary malignant glioma (PMG) often occurs late in the illness course, despite significant care needs and overall poor prognosis. This study aimed to understand patient experience at the end of life and document supportive and palliative care needs. Methods: A qualitative study was conducted involving ten PMG patients who were at different stages in the illness course including the end of life and had varying levels of physical and cognitive function. Consecutive, eligible patients attending neurosurgery, oncology, and palliative care services of two metropolitan hospitals were recruited. In-depth interviews explored supportive and palliative care needs across the disease trajectory. Interviews were analysed independently by three investigators consistent with a grounded theory approach, and emerging ideas were compared and refined to define key patient experiences. Results: Despite the medical treatment and supportive care available, there remains a gap in services addressing complex existential and psychosocial needs that were markedly valued by patients. Patient experience was characterised by a pervasive loss of all that encompassed their former sense of self and a focus on immediate needs. Conclusions: Patients in this study had substantial needs, which were often not shared and not addressed by the current medical system of care. An improved multidisciplinary care model is indicated, which proactively (1) engages care coordination and advocacy; (2) minimises patients sense of waiting and uncertainty through mapping out a plan, including involvement of palliative care in a timely fashion; and (3) actively invites discussion around goals and preferences for care to promote patients sense of self.
Original languageEnglish
Pages (from-to)389 - 397
Number of pages9
JournalSupportive Care in Cancer
Volume22
Issue number2
DOIs
Publication statusPublished - 2014

Cite this

Philip, Jennifer Anne Marshall ; Collins, Anna ; Brand, Caroline Anne ; Moore, Gaye E ; Lethborg, Carrie ; Sundararajan, Vijaya ; Murphy, Michael ; Gold, Michelle E. / "I'm just waiting...": an exploration of the experience of living and dying with primary malignant glioma. In: Supportive Care in Cancer. 2014 ; Vol. 22, No. 2. pp. 389 - 397.
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abstract = "Purpose: Referral to supportive and palliative care services for people with high-grade primary malignant glioma (PMG) often occurs late in the illness course, despite significant care needs and overall poor prognosis. This study aimed to understand patient experience at the end of life and document supportive and palliative care needs. Methods: A qualitative study was conducted involving ten PMG patients who were at different stages in the illness course including the end of life and had varying levels of physical and cognitive function. Consecutive, eligible patients attending neurosurgery, oncology, and palliative care services of two metropolitan hospitals were recruited. In-depth interviews explored supportive and palliative care needs across the disease trajectory. Interviews were analysed independently by three investigators consistent with a grounded theory approach, and emerging ideas were compared and refined to define key patient experiences. Results: Despite the medical treatment and supportive care available, there remains a gap in services addressing complex existential and psychosocial needs that were markedly valued by patients. Patient experience was characterised by a pervasive loss of all that encompassed their former sense of self and a focus on immediate needs. Conclusions: Patients in this study had substantial needs, which were often not shared and not addressed by the current medical system of care. An improved multidisciplinary care model is indicated, which proactively (1) engages care coordination and advocacy; (2) minimises patients sense of waiting and uncertainty through mapping out a plan, including involvement of palliative care in a timely fashion; and (3) actively invites discussion around goals and preferences for care to promote patients sense of self.",
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Philip, JAM, Collins, A, Brand, CA, Moore, GE, Lethborg, C, Sundararajan, V, Murphy, M & Gold, ME 2014, '"I'm just waiting...": an exploration of the experience of living and dying with primary malignant glioma', Supportive Care in Cancer, vol. 22, no. 2, pp. 389 - 397. https://doi.org/10.1007/s00520-013-1986-1

"I'm just waiting...": an exploration of the experience of living and dying with primary malignant glioma. / Philip, Jennifer Anne Marshall; Collins, Anna; Brand, Caroline Anne; Moore, Gaye E; Lethborg, Carrie; Sundararajan, Vijaya; Murphy, Michael; Gold, Michelle E.

In: Supportive Care in Cancer, Vol. 22, No. 2, 2014, p. 389 - 397.

Research output: Contribution to journalArticleResearchpeer-review

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T1 - "I'm just waiting...": an exploration of the experience of living and dying with primary malignant glioma

AU - Philip, Jennifer Anne Marshall

AU - Collins, Anna

AU - Brand, Caroline Anne

AU - Moore, Gaye E

AU - Lethborg, Carrie

AU - Sundararajan, Vijaya

AU - Murphy, Michael

AU - Gold, Michelle E

PY - 2014

Y1 - 2014

N2 - Purpose: Referral to supportive and palliative care services for people with high-grade primary malignant glioma (PMG) often occurs late in the illness course, despite significant care needs and overall poor prognosis. This study aimed to understand patient experience at the end of life and document supportive and palliative care needs. Methods: A qualitative study was conducted involving ten PMG patients who were at different stages in the illness course including the end of life and had varying levels of physical and cognitive function. Consecutive, eligible patients attending neurosurgery, oncology, and palliative care services of two metropolitan hospitals were recruited. In-depth interviews explored supportive and palliative care needs across the disease trajectory. Interviews were analysed independently by three investigators consistent with a grounded theory approach, and emerging ideas were compared and refined to define key patient experiences. Results: Despite the medical treatment and supportive care available, there remains a gap in services addressing complex existential and psychosocial needs that were markedly valued by patients. Patient experience was characterised by a pervasive loss of all that encompassed their former sense of self and a focus on immediate needs. Conclusions: Patients in this study had substantial needs, which were often not shared and not addressed by the current medical system of care. An improved multidisciplinary care model is indicated, which proactively (1) engages care coordination and advocacy; (2) minimises patients sense of waiting and uncertainty through mapping out a plan, including involvement of palliative care in a timely fashion; and (3) actively invites discussion around goals and preferences for care to promote patients sense of self.

AB - Purpose: Referral to supportive and palliative care services for people with high-grade primary malignant glioma (PMG) often occurs late in the illness course, despite significant care needs and overall poor prognosis. This study aimed to understand patient experience at the end of life and document supportive and palliative care needs. Methods: A qualitative study was conducted involving ten PMG patients who were at different stages in the illness course including the end of life and had varying levels of physical and cognitive function. Consecutive, eligible patients attending neurosurgery, oncology, and palliative care services of two metropolitan hospitals were recruited. In-depth interviews explored supportive and palliative care needs across the disease trajectory. Interviews were analysed independently by three investigators consistent with a grounded theory approach, and emerging ideas were compared and refined to define key patient experiences. Results: Despite the medical treatment and supportive care available, there remains a gap in services addressing complex existential and psychosocial needs that were markedly valued by patients. Patient experience was characterised by a pervasive loss of all that encompassed their former sense of self and a focus on immediate needs. Conclusions: Patients in this study had substantial needs, which were often not shared and not addressed by the current medical system of care. An improved multidisciplinary care model is indicated, which proactively (1) engages care coordination and advocacy; (2) minimises patients sense of waiting and uncertainty through mapping out a plan, including involvement of palliative care in a timely fashion; and (3) actively invites discussion around goals and preferences for care to promote patients sense of self.

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U2 - 10.1007/s00520-013-1986-1

DO - 10.1007/s00520-013-1986-1

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VL - 22

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JO - Supportive Care in Cancer

JF - Supportive Care in Cancer

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