Decision-making for people with dementia and advanced kidney disease: a secondary qualitative analysis of interviews from the Conservative Kidney Management Assessment of Practice Patterns Study

Abstract

ObjectiveTo explore dialysis decision-making for adults who lack capacity due to cognitive impairment, a common and under-recognised condition in those with advanced chronic kidney disease (CKD).DesignSecondary analysis of qualitative data collected during the Conservative Kidney Management Assessment of Practice Patterns Study programme of research was performed. Sixty semistructured interviews were conducted with multiprofessional team members from UK renal centres. Staff were asked about local facilities, the value of conservative kidney management (CKM), when and with whom CKM was discussed and how CKM could be improved. Thematic analysis was employed to identify, characterise and report on themes that emerged from the data, focused on the specific issues experienced by people with dementia.SettingA purposive sample of nine UK renal centres differing in the scale of their CKM programmes.ParticipantsClinical directors of renal centres identified staff involved in CKM. Staff were asked to participate if they had experience of low clearance clinics or of caring for patients with advanced CKD (estimated glomerular filtration rate <20mL/min/1.732 or >65 years with end-stage kidney disease).ResultsTwo overarching themes were identified: factors taken into consideration during decision-making, and the process of decision-making itself. Comorbidity, social support, quality of life and the feasibility of dialysis were reported as factors pertinent to clinicians’ decisions regarding suitability. The majority of renal centres practised multidisciplinary ‘best interests’ decision-making for those without capacity. Attitudes to advance care planning were divided.ConclusionsIn view of the prevalence of cognitive impairment among those with advanced CKD, we suggest consideration of routine assessment of cognition and capacity. In the UK, dialysis is initiated and continued for individuals with dementia and services should be adapted to meet the needs of this population.

Práticas de cuidado hospitalares no final de vida: revisão integrativa

“…S. Chou et al, 2017;De Bal et al, 2006;De Witt Jansen et al, 2017;Guardia-Mancilla et al, 2017;Philip et al, 2019;Reid et al, 2015;L. Robijn et al, 2017;Lenzo Robijn et al, 2018;Robinson et al, 2007;Scott et al, 2018;Sellars et al, 2017;Wagemans et al, 2017) e sete com métodos mistos (Anderson et al, 2011;Barnato et al, 2008;Kruser et al, 2017;Kryworuchko et al, 2016;Le & Watt, 2010;McIlvennan et al, 2017). O período de publicação dos estudos variou entre 1986 e 2020, sendo os anos com maior publicação 2017 (W.-Y.…”

“…S. Chou et al, 2017;De Bal et al, 2006;De Witt Jansen et al, 2017;DeMartino et al, 2017;Guardia-Mancilla et al, 2017;Koff et al, 2017;Kruser et al, 2017;Opstelten et al, 2017;L. Robijn et al, 2017;Sellars et al, 2017;Syed et al, 2017;Verhofstede et al, 2017;Wagemans et al, 2017), 2018 (Årestedt et al, 2018;Axelsson et al, 2018;H.-C. Chou et al, 2018;Fu et al, 2018;Hamano et al, 2018;Montagnini et al, 2018;Piili et al, 2018;Lenzo Robijn et al, 2018;Scott et al, 2018;Tsai et al, 2018;Ziegler et al, 2018(Díez-Manglano et al, 2019Economos et al, 2019;Gilbar et al, 2019;Hiramoto et al, 2019;Mori et al, 2019;Mroueh et al, 2019;Wang et al, 2019), respectivamente.…”

“…S. Chou et al, 2017;Clarke et al, 2014;Cook et al, 1995Cook et al, , 1995De Bal et al, 2006;De Witt Jansen et al, 2017;DeMartino et al, 2017;Díez-Manglano et al, 2019;Farrington et al, 2014;Gilbar et al, 2019;Guardia-Mancilla et al, 2017;Hamano et al, 2018;Hiramoto et al, 2019;Kruser et al, 2017;Kryworuchko et al, 2016;Le & Watt, 2010;Liu et al, 2015;McIlvennan et al, 2017;Montagnini et al, 2018;Mori et al, 2019;Parpa et al, 2010;Penders et al, 2020;Philip et al, 2019;Piili et al, 2018;Pugh et al, 2009;Reid et al, 2015;L. Robijn et al, 2017;Lenzo Robijn et al, 2018;Robinson et al, 2007;Scott et al, 2018;Seale, 2010;Sellars et al, 2017;Steindal et al, 2015;Syed et al, 2017;Taniguchi et al, 2016;Thomas et al, 2014;Verhofstede et al, 2017;Wagemans et al, 2017;Ziegler et al, 2018), seguido pelo nível IV, identificado em 10 estudos (Camhi et al, 2009;H.-C. Chou et al, 2018;Economos et al, 2019;Fu et al, 2018;…”

“…A manutenção da hemodiálise sustenta-se na qualidade e expectativa de vida, no interesse do paciente e familiares, não sendo recomendada, devido à invasividade, a pacientes com tempo limitado de vida, especialmente com doença oncológica (Koff et al, 2017;Kryworuchko et al, 2016;Scott et al, 2018). Quando a prática é iniciada na fase final da vida, tende a não ser suspensa (Pugh et al, 2009).…”

The Charlson Comorbidity Index – its impact on hospitalization and mortality in chronic renal disease

“…Furthermore, the CCI might be a valuable tool regarding dialysis decision making for patients with advanced CKD and severe comorbidity burden, frequently with cognitive impairment and who might benefit from conservative care, centered on quality of life 19 .…”