Advance care planning and health literacy in older dialysis patients: qualitative interview study.

OBJECTIVES: Low health literacy among older adults is associated with limited engagement in end-of-life care planning, higher hospitalisation rates and increased mortality. Frequently, older dialysis patients derive no survival benefit from dialysis and their quality of life often deteriorates further on dialysis. Older dialysis patients' values and wishes are frequently unknown during key healthcare decision making and many endure medically intensive end-of-life scenarios. The objectives of this study were to explore older dialysis patients' understanding of haemodialysis, to explore their engagement in end-of-life care planning and to explore their satisfaction with life on haemodialysis. METHODS: 15 older dialysis patients participated in qualitative semistructured interviews in two haemodialysis units in Ireland. Thematic saturation was reached. Thematic analysis, applied inductively, was used to distill the data. RESULTS: Themes identified included disempowerment among participants reflected limited health literacy, poor advance care planning compromised participant well-being, haemodialysis compromised participants' core values. CONCLUSION: Health literacy levels among older dialysis patients are poor, patient empowerment is limited and their participation in shared decision making and advance care planning is suboptimal. Consequently, healthcare decision making, including haemodialysis, may jeopardise patients' core values. Improving health literacy through enhanced patient education and improved communication skills training for clinicians is necessary to promote patient participation in shared decision making. Clinician training to facilitate discussion of patients' values and wishes will help guide clinicians and patients towards healthcare decisions most concordant with patients' core values. This approach will optimise the circumstances for patient-centred care.

Advance care planning in older dialysis patients: health care literacy qualitative study.

OBJECTIVES: Low health literacy among older adults is associated with limited engagement in end-of-life care plans, more hospitalisations and excess mortality. Frequently, older patients derive no survival benefit from dialysis and quality of life often deteriorates with dialysis. Older dialysis patients' values and wishes are often unknown during key healthcare decision-making and many endure medically intensive end-of-life interventions . The objectives of this study were to examine older dialysis patients' understanding of haemodialysis, their engagement in end-of-life care planning and their satisfaction with life on haemodialysis. METHODS: 15 older dialysis patients participated in qualitative semi-structured interviews in two haemodialysis units . Thematic saturation was reached. Thematic analysis, applied inductively, distilled the data. RESULTS: Themes identified included disempowerment which reflected limited health literacy, poor advance care planning compromised well-being and haemodialysis compromised their core values. CONCLUSION: Health literacy among older dialysis patients appeared poor, patient empowerment was limited and participation in shared decision-making and advance care planning suboptimal. Consequently, complex healthcare decision-making, including haemodialysis may jeopardise patients' core values. These findings have significant implications for the validity of the informed consent process prior to dialysis initiation. Improved health literacy through enhanced patient education and better communication skills for clinicians are necessary to promote patient participation in shared decision-making. Clinician training to facilitate discussion of patients' values and wishes will help guide clinicians and patients towards healthcare decisions most concordant with individual core values. This will optimise patient-centred care.

Experiences of renal healthcare practitioners during the COVID-19 pandemic: a multi-methods approach.

BACKGROUND: Globally, renal healthcare practitioners provide intensive and protracted support to a highly complex multi-morbid patient population however knowledge about the impact of COVID-19 on these practitioners is extremely limited. OBJECTIVE: This study aimed to explore the experiences of COVID-19 with renal healthcare practitioners during the first global lockdown between June 2020 and September 2020. METHODS: A multi-methods approach was carried out including a quantitative survey and qualitative interviews. This was a multinational study of renal healthcare practitioners from 29 countries. Quantitative: A self-designed survey on COVID-19 experiences and standardised questionnaires (General Health Questionnaire-12; Maslach Burnout Inventory). Descriptive statistics were generated for numerical data. Qualitative: Online semi-structured interviews were conducted. Data was subjected to thematic analysis. Renal healthcare practitioners (n = 251) completed an online survey. Thirteen renal healthcare practitioners took part in semi-structured interviews (12 nurses and 1 dietician). RESULTS: The majority of participants surveyed were female (86.9 %; n = 218), nurses (86.9 %; n = 218) with an average 21.5 (SD = 11.1) years' experience since professional qualification, and 16.3 years (SD = 9.3) working in renal healthcare. Survey responses indicated a level of preparedness, training and satisfactory personal protective equipment during the pandemic however approximately 40.3 % experienced fear about attending work, and 49.8 % experienced mental health distress. The highest prevalence of burnout was emotional exhaustion (35.9 %). Three themes emerged from the qualitative analysis highlighting the holistic complexities in managing renal healthcare, a neglected specialist workforce, and the need for appropriate support at work during a pandemic. CONCLUSIONS: Results have highlighted the psychological impact, in terms of emotional exhaustion and mental health distress in our sample of renal healthcare practitioners. As the pandemic has continued, it is important to consider the long-term impact on an already stretched workforce including the risk of developing mental health disorders. Future research and interventions are required to understand and improve the provision of psychological support for specialist medical and nursing personnel.

Advance care plan barriers in older patients with end-stage renal disease: a qualitative nephrologist interview study.

OBJECTIVES: Older patients with end-stage renal disease are willing participants in advance care planning but just over 10% are engaged in this process. Nephrologists fear such conversations may upset patients and so tend to avoid these discussions. This approach denies patients the opportunity to discuss their end-of-life care preferences. Many patients endure medically intensive end-of-life scenarios as a result. This study aims to explore the rationale underpinning nephrologists' clinical decision-making in the management of older patients with end-stage renal disease and to make recommendations that inform policymakers and enhance advance care planning for this patient group. METHODS: A qualitative interview study of 20 nephrologists was undertaken. Nephrologists were asked about their management of end-stage renal disease in older patients, conservative management, dialysis withdrawal and end-of-life care. Eligible participants were nephrologists working in Ireland. Five nephrologists participated in a recorded focus group and 15 nephrologists participated in individual digitally recorded telephone interviews. Semistructured interviews were conducted; thematic analysis was used to distil the results. RESULTS: Three key themes emerged: barriers to advance care planning; barriers to shared decision-making; and avoidance of end-of-life care discussion. CONCLUSIONS: Advance care planning is not an integral part of the routine care of older patients with end-stage renal disease. Absence of formal training of nephrologists in how to communicate with patients contributes to poor advance care planning. Nephrologists lack clinical experience of conservatively managing end-stage renal disease and end-of-life care in older patients. Key policy recommendations include formal communication skills training for nephrologists and development of the conservative management service.