Planning and education can help create systemwide change in order to implement greater use of advance care planning and palliative care for those with end-stage renal disease (ESRD).
An integrated palliative care approach is possible for patients with end-stage renal disease if the right tools and resources are in place, according to authors who wrote about their experience working in a renal care system in Canada.
Although the authors, writing on behalf of the British Columbia Renal Palliative Care Committee, noted that they operate within the Canadian provincial health care system, they said that over the past 15 years, they have identified factors that can be used to effectively implement change in other types of health systems as well.
Five-year survival rates in chronic kidney disease (CKD) decline in stages 4 and 5 in Canada the older the patient is and the later dialysis starts, making the need for advance care planning (ACP) that much more important. But most nephrologists are not accustomed to incorporating these discussions into their practice; creating this kind of culture shift requires partnerships with other palliative care groups, the authors said.
In British Columbia, kidney care is delivered through BC Renal, which manages nearly 20,000 patients with advanced CKD, with more than 3400 patients on dialysis. The remainder receive nondialysis kidney care. BC Renal embraced palliative care as a priority in 2004 and embarked on planning and education activities in 2005 to create a framework for such care.
They identified 4 factors that are necessary for renal palliative care: patient identification, ACP, symptom assessment and management, and caring of the dying patient and providing bereavement services.
As part of this process, education about palliative care was not limited to just a few professionals. Instead, it was incorporated throughout the kidney care workforce. In addition, wider education about the issue also helped to create culture change and “champions” within the organization.
The effort had support both from an infrastructure perspective as well as a financial one, the authors noted. Clinical algorithms for symptom management were developed. The province also uses the Patient Records and Outcome Management Information System (PROMIS), which provides quality improvement data and a guide to patient resources; in addition, specific modules were created for symptom management and ACP documentation.
The palliative care committee also included patients, who shared what was most important to them, the authors noted.
In 2010, renal programs began piloting the routine assessment of patient symptoms such as pain, insomnia, pruritus, restless legs syndrome, and others; this is now happening across the board using My Symptom Checklist. In addition, the province made available drug therapies previously available only to patients receiving dialysis. With the change, the therapies are now accessible to all patients with an estimated glomerular filtration rate below 15 mL/min/1.73 m2.
In 2014, 5 years after the framework for care was published, the committee conducted an interim audit via a survey to verify implementation progress. The majority of the respondents—83%—were aware of ACP strategies, and 57% had received training. Most indicated that the training gave them the skills to discuss ACP with patients.
Chiu HHL, Murphy-Burke DM, Thomas SA, et al. Advancing palliative care in patients with CKD: from ideas to practice. Am J Kidney Dis. Published online November 8, 2020. doi:10.1053/j.ajkd.2020.09.012