Please use this identifier to cite or link to this item: https://ahro.austin.org.au/austinjspui/handle/1/16941
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dc.contributor.authorSellars, Marcus-
dc.contributor.authorClayton, Josephine M-
dc.contributor.authorMorton, Rachael L-
dc.contributor.authorLuckett, Tim-
dc.contributor.authorSilvester, William-
dc.contributor.authorSpencer, Lucy-
dc.contributor.authorPollock, Carol A-
dc.contributor.authorWalker, Rowan G-
dc.contributor.authorKerr, Peter G-
dc.contributor.authorTong, Allison-
dc.date.accessioned2017-11-15T23:09:32Z-
dc.date.available2017-11-15T23:09:32Z-
dc.date.issued2018-
dc.identifier.citationAmerican Journal of Kidney Diseases 2018; 71(2): 216-224en_US
dc.identifier.urihttps://ahro.austin.org.au/austinjspui/handle/1/16941-
dc.description.abstractBACKGROUND: 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.en_US
dc.subjectACP discussionsen_US
dc.subjectChronic kidney disease (CKD)en_US
dc.subjectadvance care planning (ACP)en_US
dc.subjectadvance directivesen_US
dc.subjectconservative careen_US
dc.subjectinterviewsen_US
dc.subjectnephrologyen_US
dc.subjectshared decision makingen_US
dc.subjectdoctor-patient communicationen_US
dc.subjectsemi-structured interviewsen_US
dc.subjectinformed decision-makingen_US
dc.subjectpatient preferencesen_US
dc.subjectsupportive careen_US
dc.subjectend-of-lifeen_US
dc.subjectmedical futilityen_US
dc.subjectnephrology trainingen_US
dc.subjectchronic renal insufficiencyen_US
dc.subjectconservative treatmenten_US
dc.titleAn Interview Study of Patient and Caregiver Perspectives on Advance Care Planning in ESRDen_US
dc.typeJournal Articleen_US
dc.identifier.journaltitleAmerican Journal of Kidney Diseasesen_US
dc.identifier.affiliationKolling Institute, Northern Clinical School, Faculty of Medicine, The University of Sydney, Australiaen_US
dc.identifier.affiliationAdvance Care Planning Australia, Austin Health, Heidelberg, Victoria, Australiaen_US
dc.identifier.affiliationHammondCare Palliative & Supportive Care Service, Greenwich Hospital, Sydney, Australiaen_US
dc.identifier.affiliationImproving Palliative Care through Clinical Trials (ImPaCCT), New South Wales, Australiaen_US
dc.identifier.affiliationNHMRC Clinical Trials Centre, The University of Sydney, Sydney, Australiaen_US
dc.identifier.affiliationFaculty of Health, University of Technology Sydney (UTS), Sydney, Australiaen_US
dc.identifier.affiliationDepartment of Renal Medicine, Royal North Shore Hospital, Sydney, Australiaen_US
dc.identifier.affiliationDepartment of Renal Medicine, Alfred Hospital, Melbourne, Australiaen_US
dc.identifier.affiliationDepartment of Nephrology, Monash Medical Centre, Melbourne, Australiaen_US
dc.identifier.affiliationSydney School of Public Health, The University of Sydney, Sydney, Australiaen_US
dc.identifier.affiliationCentre for Kidney Research, The Children’s Hospital at Westmead, NSW, Australiaen_US
dc.identifier.doi10.1053/j.ajkd.2017.07.021en_US
dc.type.contentTexten_US
dc.identifier.pubmedid29132946-
dc.type.austinJournal Articleen_US
local.name.researcherSellars, Marcus
item.openairecristypehttp://purl.org/coar/resource_type/c_18cf-
item.cerifentitytypePublications-
item.fulltextNo Fulltext-
item.grantfulltextnone-
item.openairetypeJournal Article-
crisitem.author.deptAdvance Care Planning-
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