Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD

Allison Tong, Katharine L. Cheung, Sumi Sukumaran Nair, Manjula Kurella Tamura, Jonathan C. Craig, Wolfgang C. Winkelmayer

Research output: Contribution to journalArticle

52 Citations (Scopus)

Abstract

Background Although dialysis prolongs life for patients with end-stage kidney disease, 20% of deaths in this population are preceded by dialysis therapy withdrawal. Recently, there has been more focus on conservative (nondialytic) care as a legitimate option, particularly for elderly patients. This study aims to describe patients' and caregivers' perspectives on conservative treatment and end-of-life care in chronic kidney disease (CKD). Study Design Systematic review and thematic synthesis of qualitative studies. Setting & Population Patients with CKD and caregivers. Search Strategy & Sources MEDLINE, Embase, PsycINFO, CINAHL, and reference lists were searched to May 2013. Analytical Approach Thematic synthesis was used to analyze the findings. Results 26 studies involving more than 711 patients (non-dialysis dependent [n = 41], hemodialysis [n = 544], peritoneal dialysis [n = 9]; unspecified dialysis modality [n = 31], conservative management [n = 86]) and 178 caregivers were included. We identified 5 themes: invasive suffering (bodily deterioration, loss of freedom and independence, unyielding fatigue and pain, resignation, treatment burden and harm, financial strain), personal vulnerability (imminence of death, misunderstanding and judgment, autonomy and dignity, medical abandonment, trust and safety), relational responsibility (being a burden, demonstrating loyalty, protecting others from grief), negotiating existential tensions (accepting natural course of life, disrupted aging, worthlessness, living on borrowed time, respecting sanctity of life, life satisfaction, preserving self-identity), and preparedness (decisional clarity, informational power, spirituality and hope). Limitations Non-English articles were excluded; therefore, the transferability of findings to other populations is unclear. Conclusions Some patients with CKD experience physical and psychosocial frailty and feel ambivalent about prolonging life. Some caregivers believe in providing relief from suffering, but are uncertain about making decisions regarding dialysis therapy initiation and discontinuation. We suggest that CKD management should encompass palliative care strategies that promote emotional resilience, sense of well-being, and self-value. Also, respectful and attentive communication may empower patients to convey their values and preferences about their own care.

Original languageEnglish (US)
Pages (from-to)913-927
Number of pages15
JournalAmerican Journal of Kidney Diseases
Volume63
Issue number6
DOIs
StatePublished - Jan 1 2014
Externally publishedYes

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Terminal Care
Chronic Renal Insufficiency
Caregivers
Dialysis
Psychological Stress
Hope
Population
Value of Life
Spirituality
Grief
Negotiating
Peritoneal Dialysis
Disease Management
Palliative Care
MEDLINE
Chronic Kidney Failure
Fatigue
Renal Dialysis
Decision Making
Therapeutics

Keywords

  • advance care planning
  • conservative care
  • dialysis
  • end-of-life care
  • end-stage kidney disease
  • end-stage renal disease (ESRD)
  • Palliative care
  • patient-centered care
  • qualitative research

ASJC Scopus subject areas

  • Nephrology

Cite this

Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD. / Tong, Allison; Cheung, Katharine L.; Sukumaran Nair, Sumi; Kurella Tamura, Manjula; Craig, Jonathan C.; Winkelmayer, Wolfgang C.

In: American Journal of Kidney Diseases, Vol. 63, No. 6, 01.01.2014, p. 913-927.

Research output: Contribution to journalArticle

Tong, Allison ; Cheung, Katharine L. ; Sukumaran Nair, Sumi ; Kurella Tamura, Manjula ; Craig, Jonathan C. ; Winkelmayer, Wolfgang C. / Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD. In: American Journal of Kidney Diseases. 2014 ; Vol. 63, No. 6. pp. 913-927.
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abstract = "Background Although dialysis prolongs life for patients with end-stage kidney disease, 20{\%} of deaths in this population are preceded by dialysis therapy withdrawal. Recently, there has been more focus on conservative (nondialytic) care as a legitimate option, particularly for elderly patients. This study aims to describe patients' and caregivers' perspectives on conservative treatment and end-of-life care in chronic kidney disease (CKD). Study Design Systematic review and thematic synthesis of qualitative studies. Setting & Population Patients with CKD and caregivers. Search Strategy & Sources MEDLINE, Embase, PsycINFO, CINAHL, and reference lists were searched to May 2013. Analytical Approach Thematic synthesis was used to analyze the findings. Results 26 studies involving more than 711 patients (non-dialysis dependent [n = 41], hemodialysis [n = 544], peritoneal dialysis [n = 9]; unspecified dialysis modality [n = 31], conservative management [n = 86]) and 178 caregivers were included. We identified 5 themes: invasive suffering (bodily deterioration, loss of freedom and independence, unyielding fatigue and pain, resignation, treatment burden and harm, financial strain), personal vulnerability (imminence of death, misunderstanding and judgment, autonomy and dignity, medical abandonment, trust and safety), relational responsibility (being a burden, demonstrating loyalty, protecting others from grief), negotiating existential tensions (accepting natural course of life, disrupted aging, worthlessness, living on borrowed time, respecting sanctity of life, life satisfaction, preserving self-identity), and preparedness (decisional clarity, informational power, spirituality and hope). Limitations Non-English articles were excluded; therefore, the transferability of findings to other populations is unclear. Conclusions Some patients with CKD experience physical and psychosocial frailty and feel ambivalent about prolonging life. Some caregivers believe in providing relief from suffering, but are uncertain about making decisions regarding dialysis therapy initiation and discontinuation. We suggest that CKD management should encompass palliative care strategies that promote emotional resilience, sense of well-being, and self-value. Also, respectful and attentive communication may empower patients to convey their values and preferences about their own care.",
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AU - Craig, Jonathan C.

AU - Winkelmayer, Wolfgang C.

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N2 - Background Although dialysis prolongs life for patients with end-stage kidney disease, 20% of deaths in this population are preceded by dialysis therapy withdrawal. Recently, there has been more focus on conservative (nondialytic) care as a legitimate option, particularly for elderly patients. This study aims to describe patients' and caregivers' perspectives on conservative treatment and end-of-life care in chronic kidney disease (CKD). Study Design Systematic review and thematic synthesis of qualitative studies. Setting & Population Patients with CKD and caregivers. Search Strategy & Sources MEDLINE, Embase, PsycINFO, CINAHL, and reference lists were searched to May 2013. Analytical Approach Thematic synthesis was used to analyze the findings. Results 26 studies involving more than 711 patients (non-dialysis dependent [n = 41], hemodialysis [n = 544], peritoneal dialysis [n = 9]; unspecified dialysis modality [n = 31], conservative management [n = 86]) and 178 caregivers were included. We identified 5 themes: invasive suffering (bodily deterioration, loss of freedom and independence, unyielding fatigue and pain, resignation, treatment burden and harm, financial strain), personal vulnerability (imminence of death, misunderstanding and judgment, autonomy and dignity, medical abandonment, trust and safety), relational responsibility (being a burden, demonstrating loyalty, protecting others from grief), negotiating existential tensions (accepting natural course of life, disrupted aging, worthlessness, living on borrowed time, respecting sanctity of life, life satisfaction, preserving self-identity), and preparedness (decisional clarity, informational power, spirituality and hope). Limitations Non-English articles were excluded; therefore, the transferability of findings to other populations is unclear. Conclusions Some patients with CKD experience physical and psychosocial frailty and feel ambivalent about prolonging life. Some caregivers believe in providing relief from suffering, but are uncertain about making decisions regarding dialysis therapy initiation and discontinuation. We suggest that CKD management should encompass palliative care strategies that promote emotional resilience, sense of well-being, and self-value. Also, respectful and attentive communication may empower patients to convey their values and preferences about their own care.

AB - Background Although dialysis prolongs life for patients with end-stage kidney disease, 20% of deaths in this population are preceded by dialysis therapy withdrawal. Recently, there has been more focus on conservative (nondialytic) care as a legitimate option, particularly for elderly patients. This study aims to describe patients' and caregivers' perspectives on conservative treatment and end-of-life care in chronic kidney disease (CKD). Study Design Systematic review and thematic synthesis of qualitative studies. Setting & Population Patients with CKD and caregivers. Search Strategy & Sources MEDLINE, Embase, PsycINFO, CINAHL, and reference lists were searched to May 2013. Analytical Approach Thematic synthesis was used to analyze the findings. Results 26 studies involving more than 711 patients (non-dialysis dependent [n = 41], hemodialysis [n = 544], peritoneal dialysis [n = 9]; unspecified dialysis modality [n = 31], conservative management [n = 86]) and 178 caregivers were included. We identified 5 themes: invasive suffering (bodily deterioration, loss of freedom and independence, unyielding fatigue and pain, resignation, treatment burden and harm, financial strain), personal vulnerability (imminence of death, misunderstanding and judgment, autonomy and dignity, medical abandonment, trust and safety), relational responsibility (being a burden, demonstrating loyalty, protecting others from grief), negotiating existential tensions (accepting natural course of life, disrupted aging, worthlessness, living on borrowed time, respecting sanctity of life, life satisfaction, preserving self-identity), and preparedness (decisional clarity, informational power, spirituality and hope). Limitations Non-English articles were excluded; therefore, the transferability of findings to other populations is unclear. Conclusions Some patients with CKD experience physical and psychosocial frailty and feel ambivalent about prolonging life. Some caregivers believe in providing relief from suffering, but are uncertain about making decisions regarding dialysis therapy initiation and discontinuation. We suggest that CKD management should encompass palliative care strategies that promote emotional resilience, sense of well-being, and self-value. Also, respectful and attentive communication may empower patients to convey their values and preferences about their own care.

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