Abstract Its Recently, there has been an effort to integrate palliative care services into chronic illness management for those suffering from serious illnesses like chronic kidney disease (CKD). Unfortunately, however, barriers remain that prevent their effective delivery.
This study evaluated nephrology and palliative care clinicians’ perceptions regarding the appropriateness and benefits of palliative care for those living with advanced chronic kidney disease. A survey including open-ended questions as well as multiple choice questions was administered.
Symptom Management
Effective symptom management extends beyond pain relief to address loss of appetite, nausea and vomiting, sleep disturbances and itching. This requires identifying and assessing its source; its reversible factors; level of distress or dysfunction caused by symptoms; non-pharmacologic treatment options available as well as expectations management strategies.
End-stage kidney disease symptoms can be complex and compounded by coexisting conditions. Palliative care teams have experience managing these complications and can assist with issues like high blood pressure, heart disease, diabetes and medication balancing.
Instead of having one individual provide specialist palliative care support, our program implemented a strategy of equipping multiple renal professionals with the skills required for implementing a palliative care approach. This enabled greater sustainability of uptake, empowered leaders to catalyze culture change and enabled leaders to catalyze cultural transformation. For this reason, semi-structured focus groups and interviews were held with 61 participants–nurses, doctors and allied healthcare professionals were included among them–see Additional Material Tables 1 and 2 for details.
Psychosocial Support
Living with chronic kidney disease (CKD) can be both physically and emotionally draining, leading to depression or other psychosocial symptoms like anxiety, irritability or guilt. Psychosocial support services may be valuable in managing symptoms effectively and improving quality of life for those coping with CKD and their families.
Although some might view palliative care only as a last resort option for those near death, multiple randomized prospective trials in oncology and heart disease demonstrate that early intervention improves outcomes for patients suffering from serious illnesses including end stage renal disease (ESRD) – known as kidney supportive care.
For culture change and palliative care integration in nephrology, our implementation strategy included engaging the kidney care professional workforce as the primary agent of change. This allowed for sustainable uptake across provincial renal networks while simultaneously providing individuals with leadership opportunities that would catalyze cultural transformation.
End-of-Life Decision Making
Many of the same issues affecting patients with cancer, heart disease and other serious illnesses also impact those living with CKD. Randomized trials have demonstrated that taking proactive approaches to palliative care improves both quality of life and outcomes.
Kidney supportive care involves symptom management, increased attention to nonphysical dimensions of suffering, explorations of prognostic awareness and gathering patient preferences. It may include options such as managing kidney disease without dialysis (also referred to as active medical management, comprehensive conservative care or nondialytic hemodialysis) which should be integrated with curative treatments for best results.
A BCR work group composed of content experts in nephrology and palliative care, patient partners, physicians and allied health professionals developed and is implementing a provincial End-of-Life (EOL) Framework across its renal network, such as education sessions, toolkit and clinical algorithms. An analysis grid was also created in order to explore perceptions and experiences across culturally diverse stakeholders; over time an emerging understanding of autonomy, justice and beneficence/nonmaleficence principles has developed.
Collaboration Between Nephrology and Palliative Care
Progressive CKD patients experience higher morbidity and mortality rates and more symptoms and pain than patients without it, including end-of-life decisions, selecting dialysis modalities, and setting goals of care1. Their needs may include end-of-life decisions making, selecting dialysis modalities, and setting care goals1.
Though calls have been made for greater integration of palliative care into kidney disease management, its implementation remains challenging due to limited specialty palliative care services available and cultural barriers among health professionals in discussing palliative care with CKD patients and their families.
Our team has been successful in overcoming many of these obstacles through a system-wide culture shift and the creation of resources – including educational materials and training opportunities – for both renal and nonrenal clinicians. Recently, we invited renal and palliative care clinicians to take part in a survey designed to identify facilitators and barriers to collaboration as well as identify their top research and clinical priorities for EOL care for advanced CKD patients.