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ItemUnderstanding renal clinician attitudes, experiences and practice of renal supportive care, palliative care and end of life careDucharlet, Kathryn Nicole ( 2021)Abstract: People with end stage kidney disease (ESKD) report high symptom burden, complex care needs and often have limited prognosis. Renal supportive care (RSC) also known as kidney supportive care, is a clinical approach integrating nephrology and palliative care expertise to improve symptom management, treatment decision making and quality of life (QOL) for people with advanced kidney disease. Renal supportive care and palliative care have been described to improve quality of life, symptom burden and care coordination, however in practice, across Australia, renal clinicians’ perceptions of the renal supportive care and it’s role alongside nephrology care and specialist palliative care are unknown. The period of time referred to as ‘end of life’ is defined, for the purposes of this thesis, as that time when an individual who is living with, and impaired by a serious illness is considered likely to die within 12 months. This period can be a complex and challenging for renal patients, caregivers and clinicians. Recent international quantitative and qualitative studies have articulated issues and concerns raised by nephrologists, in particular, when navigating end of life decision making. Communication about prognosis and provision of end of life care is described as wanting in routine ESKD care, with some clinicians feeling inadequately prepared to have these discussions, others describing an avoidance of raising the prospect of death with patients due to concerns of damaging the patient-doctor relationship and a desire to instil hope. Renal clinicians’ experiences of transitioning treatment goals from life sustaining treatments to care focusing on symptoms and comfort including how palliative care and renal supportive care is integrated for patients in Australia have largely been undocumented. This thesis aimed to explore renal clinicians’ experiences of providing end of life care, of palliative care and of renal supportive care and to identify the strengths, limitations and opportunities of current practice to improve clinical care. In addition, this study aimed to develop recommendations regarding core duties, features of a clinical model of renal supportive care and issues to be considered for future renal supportive care service development and integration. A sequential mixed methods study was undertaken with three phases; (1) a qualitative study of 53 Victorian renal clinicians to understand experiences of providing end of life care, of palliative care and of renal supportive care, (2) an online survey of 382 renal clinicians’ experiences across Australia and New Zealand to distil components and priorities for renal supportive care services and, (3) establishment of a multidisciplinary advisory group to oversee the integration of data and develop recommendations for establishing renal supportive care services in Victoria. This program of work has demonstrated that many clinicians viewed renal supportive care as widely accepted and valuable including at a phase in the illness before patients are imminently dying, particularly in the area of symptom management. However, variation in resources, information and communication systems and healthcare delivery of renal supportive care within and between health services contributed to a wide diversity of definitions, clinical scopes and for some clinicians, uncertainty of benefit. Palliative care was viewed as valuable, especially for the final days to weeks of life, yet, was also considered to be physically and philosophically separate from nephrology care. The majority of difficult experiences reported by clinicians in end of life care provision were associated with views of compromised decision making. Decisions that were too late, rushed, or associated with a lack of agreement between patients, families and treating teams, with concerns of patients suffering or an inability to express their wishes or preferences were most concerning. When describing their experiences of renal patients deteriorating and dying, renal clinicians described a set of shared values. These included an ongoing commitment to care for patients, the importance of clinical leadership and a respect for patient choice in decision making. Experiences of distress and professional and moral discomfort were reported by renal clinicians when one or more of these values were perceived to be threatened or compromised. The Victorian renal supportive care advisory group recommended a consensus definition of renal supportive care, an ideal renal supportive care model and dedicated resources for data collection and collaboration across nephrology units to develop renal supportive care services and improve end of life experiences for patients and clinicians. In conclusion, providing end of life care to patients was often experienced as complex, uncertain, and at times, uncomfortable and distressing for renal clinicians. This was due to multiple contributory healthcare system, clinical, and patient factors, in addition to professional pressures and expectations to continue to provide care that enhanced both quality and quantity of life. These factors were often perceived as barriers for clinicians in holding earlier discussions and planning the end of life care for patients with advanced renal disease. Challenging end of life care experiences were conceptualised in terms of a self-perpetuating cycle where difficult experiences were associated with compromised professional values, variable or limited renal supportive care and palliative care support, and with little education or specific resources which served in turn to reinforce the ongoing challenges for clinicians. Opportunities or entry points to change this cycle included reconceptualising patient education and systematic approaches to articulate and integrate renal supportive care and palliative care in nephrology care. This thesis has demonstrated the ways in which experiences of providing end of life care can be challenging and the reasons renal supportive care and palliative care have not yet been established within routine nephrology care. It has also articulated approaches to address these barriers and future aspirations of renal supportive care provision including the clinical and research priorities to improve patient and clinician experiences of receiving and providing end of life care.