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Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD.
Am J Kidney Dis. 2014 Jun; 63(6):913-27.AJ

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.

Authors+Show Affiliations

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. Electronic address: allison.tong@sydney.edu.au.Division of Nephrology, University of Vermont College of Medicine, Burlington, VT.Division of Nephrology, Stanford University, Palo Alto, CA.Division of Nephrology, Stanford University, Palo Alto, CA; Geriatric Research and Education Clinical Center, VA Palo Alto Health Care System, Palo Alto, CA.Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.Division of Nephrology, Stanford University, Palo Alto, CA.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

24411716

Citation

Tong, Allison, et al. "Thematic Synthesis of Qualitative Studies On Patient and Caregiver Perspectives On End-of-life Care in CKD." American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation, vol. 63, no. 6, 2014, pp. 913-27.
Tong A, Cheung KL, Nair SS, et al. Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD. Am J Kidney Dis. 2014;63(6):913-27.
Tong, A., Cheung, K. L., Nair, S. S., Kurella Tamura, M., Craig, J. C., & Winkelmayer, W. C. (2014). Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD. American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation, 63(6), 913-27. https://doi.org/10.1053/j.ajkd.2013.11.017
Tong A, et al. Thematic Synthesis of Qualitative Studies On Patient and Caregiver Perspectives On End-of-life Care in CKD. Am J Kidney Dis. 2014;63(6):913-27. PubMed PMID: 24411716.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD. AU - Tong,Allison, AU - Cheung,Katharine L, AU - Nair,Sumi Sukumaran, AU - Kurella Tamura,Manjula, AU - Craig,Jonathan C, AU - Winkelmayer,Wolfgang C, Y1 - 2014/01/07/ PY - 2013/08/20/received PY - 2013/11/14/accepted PY - 2014/1/14/entrez PY - 2014/1/15/pubmed PY - 2014/7/16/medline KW - Palliative care KW - advance care planning KW - conservative care KW - dialysis KW - end-of-life care KW - end-stage kidney disease KW - end-stage renal disease (ESRD) KW - patient-centered care KW - qualitative research SP - 913 EP - 27 JF - American journal of kidney diseases : the official journal of the National Kidney Foundation JO - Am J Kidney Dis VL - 63 IS - 6 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. SN - 1523-6838 UR - https://www.unboundmedicine.com/medline/citation/24411716/Thematic_synthesis_of_qualitative_studies_on_patient_and_caregiver_perspectives_on_end_of_life_care_in_CKD_ L2 - https://linkinghub.elsevier.com/retrieve/pii/S0272-6386(13)01536-9 DB - PRIME DP - Unbound Medicine ER -