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An Interview Study of Patient and Caregiver Perspectives on Advance Care Planning in ESRD.
Am J Kidney Dis. 2018 02; 71(2):216-224.AJ

Abstract

BACKGROUND

Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, it can be an emotionally charged process for patients with kidney disease and their caregivers. This study aimed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward ACP.

STUDY DESIGN

Qualitative study.

SETTING & PARTICIPANTS

Patients with ESRD (n=24) and their caregivers (n=15) aged 36 to 91 years at various stages of ACP ("not commenced," "in progress," or "completed") from 3 renal services.

METHODOLOGY

Semistructured interviews.

ANALYTICAL APPROACH

Transcripts were analyzed using thematic analysis.

RESULTS

5 major themes were identified: articulating core values (avoiding futile and undignified treatment, reevaluating terms of dialysis, framing a life worth living, and refusing to be a burden), confronting conversations (signifying death and defeat, accepting inevitable death, and alleviating existential tension), negotiating mutual understanding (broaching taboos and assisting conflicted caregivers), challenging patient autonomy (family pressures to continue dialysis, grief diminishing caregivers' capacity, and leveraging support), and decisional disempowerment (lacking medical transparency and disappointment with clinical disinterest).

LIMITATIONS

Only English-speaking patients/caregivers participated in the interview.

CONCLUSIONS

ACP provides patients with ESRD and their caregivers a conduit for accepting and planning for impending death and to express treatment preferences based on self-dignity and value of living. However, ACP can be considered taboo, may require caregivers to overcome personal and decisional conflict, and may be complex if patients and caregivers are unable to accept the reality of the patient's illness. We suggest that ACP facilitators and clinicians make ACP more acceptable and less confrontational to patients and caregivers and that strategies be put in place to support caregivers who may be experiencing overwhelming grief or who have conflicting goals, particularly when they are called on to make end-of-life decisions.

Authors+Show Affiliations

Kolling Institute, Northern Clinical School, Faculty of Medicine, The University of Sydney, Sydney, Australia; Advance Care Planning Australia, Austin Health, Melbourne, Australia. Electronic address: marcus.sellars@austin.org.au.Kolling Institute, Northern Clinical School, Faculty of Medicine, The University of Sydney, Sydney, Australia; HammondCare Palliative & Supportive Care Service, Greenwich Hospital, Sydney, Australia; Improving Palliative Care through Clinical Trials (ImPaCCT), New South Wales, Australia.NHMRC Clinical Trials Centre, The University of Sydney, Sydney, Australia.Improving Palliative Care through Clinical Trials (ImPaCCT), New South Wales, Australia; Faculty of Health, University of Technology Sydney (UTS), Sydney, Australia.Kolling Institute, Northern Clinical School, Faculty of Medicine, The University of Sydney, Sydney, Australia.Department of Renal Medicine, Royal North Shore Hospital, Sydney, Australia.Kolling Institute, Northern Clinical School, Faculty of Medicine, The University of Sydney, Sydney, Australia.Department of Renal Medicine, Alfred Hospital, Melbourne, Australia.Department of Nephrology, Monash Medical Centre, Melbourne, Australia.Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, NSW, Australia.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

29132946

Citation

Sellars, Marcus, et al. "An Interview Study of Patient and Caregiver Perspectives On Advance Care Planning in ESRD." American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation, vol. 71, no. 2, 2018, pp. 216-224.
Sellars M, Clayton JM, Morton RL, et al. An Interview Study of Patient and Caregiver Perspectives on Advance Care Planning in ESRD. Am J Kidney Dis. 2018;71(2):216-224.
Sellars, M., Clayton, J. M., Morton, R. L., Luckett, T., Silvester, W., Spencer, L., Pollock, C. A., Walker, R. G., Kerr, P. G., & Tong, A. (2018). An Interview Study of Patient and Caregiver Perspectives on Advance Care Planning in ESRD. American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation, 71(2), 216-224. https://doi.org/10.1053/j.ajkd.2017.07.021
Sellars M, et al. An Interview Study of Patient and Caregiver Perspectives On Advance Care Planning in ESRD. Am J Kidney Dis. 2018;71(2):216-224. PubMed PMID: 29132946.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - An Interview Study of Patient and Caregiver Perspectives on Advance Care Planning in ESRD. AU - Sellars,Marcus, AU - Clayton,Josephine M, AU - Morton,Rachael L, AU - Luckett,Tim, AU - Silvester,William, AU - Spencer,Lucy, AU - Pollock,Carol A, AU - Walker,Rowan G, AU - Kerr,Peter G, AU - Tong,Allison, Y1 - 2017/11/11/ PY - 2017/04/16/received PY - 2017/07/30/accepted PY - 2017/11/15/pubmed PY - 2019/6/30/medline PY - 2017/11/15/entrez KW - ACP discussions KW - Chronic kidney disease (CKD) KW - advance care planning (ACP) KW - advance directives KW - chronic renal insufficiency KW - conservative care KW - conservative treatment KW - doctor-patient communication KW - end-of-life KW - informed decision-making KW - interviews KW - medical futility KW - nephrology KW - nephrology training KW - patient preferences KW - semi-structured interviews KW - shared decision making KW - supportive care SP - 216 EP - 224 JF - American journal of kidney diseases : the official journal of the National Kidney Foundation JO - Am. J. Kidney Dis. VL - 71 IS - 2 N2 - BACKGROUND: Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, it can be an emotionally charged process for patients with kidney disease and their caregivers. This study aimed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward ACP. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Patients with ESRD (n=24) and their caregivers (n=15) aged 36 to 91 years at various stages of ACP ("not commenced," "in progress," or "completed") from 3 renal services. METHODOLOGY: Semistructured interviews. ANALYTICAL APPROACH: Transcripts were analyzed using thematic analysis. RESULTS: 5 major themes were identified: articulating core values (avoiding futile and undignified treatment, reevaluating terms of dialysis, framing a life worth living, and refusing to be a burden), confronting conversations (signifying death and defeat, accepting inevitable death, and alleviating existential tension), negotiating mutual understanding (broaching taboos and assisting conflicted caregivers), challenging patient autonomy (family pressures to continue dialysis, grief diminishing caregivers' capacity, and leveraging support), and decisional disempowerment (lacking medical transparency and disappointment with clinical disinterest). LIMITATIONS: Only English-speaking patients/caregivers participated in the interview. CONCLUSIONS: ACP provides patients with ESRD and their caregivers a conduit for accepting and planning for impending death and to express treatment preferences based on self-dignity and value of living. However, ACP can be considered taboo, may require caregivers to overcome personal and decisional conflict, and may be complex if patients and caregivers are unable to accept the reality of the patient's illness. We suggest that ACP facilitators and clinicians make ACP more acceptable and less confrontational to patients and caregivers and that strategies be put in place to support caregivers who may be experiencing overwhelming grief or who have conflicting goals, particularly when they are called on to make end-of-life decisions. SN - 1523-6838 UR - https://www.unboundmedicine.com/medline/citation/29132946/An_Interview_Study_of_Patient_and_Caregiver_Perspectives_on_Advance_Care_Planning_in_ESRD_ L2 - https://linkinghub.elsevier.com/retrieve/pii/S0272-6386(17)30904-6 DB - PRIME DP - Unbound Medicine ER -