Developing the ethical framework of end-stage kidney disease care: from practice to policy.

Ethical issues relating to end-stage kidney disease (ESKD) care are increasingly being discussed by clinicians and ethicists but are still infrequently considered at a policy level or in the education and training of health care professionals. In most lower-income countries, access to kidney replacement therapies such as dialysis is not universal, leading to overt or implicit rationing of resources and potential exclusion from care of those who are unable to sustain out-of-pocket payments. These circumstances create significant inequities in access to ESKD care within and between countries and impose emotional and moral burdens on patients, families, and health care workers involved in decision-making and provision of care. End-of-life decision-making in the context of ESKD care in all countries may also create ethical dilemmas for policy makers, professionals, patients, and their families. This review outlines several ethical implications of the complex challenges that arise in the management of ESKD care around the world. We argue that more work is required to develop the ethics of ESKD care, so as to provide ethical guidance in decision-making and education and training for professionals that will support ethical practice in delivery of ESKD care. We briefly review steps that may be required to accomplish this goal, discussing potential barriers and strategies for success.

The role of kidney transplantation as a component of integrated care for chronic kidney disease.

Kidney transplant provides superior outcomes to dialysis as a treatment for end-stage kidney disease. Therefore, it is essential that kidney transplantation be part of an integrated treatment and management plan for chronic kidney disease (CKD). Developing an effective national program of transplantation is challenging because of the requirement for kidney donors and the need for a multidisciplinary team to provide expert care for both donors and recipients. This article outlines the steps necessary to establish a national kidney transplant program, starting with the requirement for effective legislation that provides the legal framework for transplantation whilst protecting organ donors, their families, recipients, and staff and is an essential requirement to combat organ trafficking. The next steps involve capacity building with the development of a multiskilled workforce, the credentialing of transplant centers, and the reporting of outcomes through national or regional registries. Although it is accepted that most transplant programs will begin with living related kidney donation, it is essential to aspire to and develop a deceased donor program. This requires engagement with multiple stakeholders, especially the patients, the general community, intensivists, and health departments. Development of transplant centers should be undertaken in concert with the development of a dialysis program. Both are essential components of integrated care for CKD and both should be viewed as part of the World Health Organization's initiative for universal health coverage. Provisions to cover the costs of treatment for patients need to be developed taking into account the state of development of the overall health framework in each country.

The Evaluation of an Orientation Program of Self-Care Abilities for Patients on Hemodialysis.

Effective management of end stage renal disease for individuals undergoing hemodialysis (HD) requires the acquisition of self-care abilities, which have been shown to improve outcomes. Studies have indicated that educational interventions improve self-care abilities in patients with chronic kidney failure. A self-care coaching intervention was designed to bridge this gap. To evaluate, we utilized a pre-test/post-test quasi-experimental design using the Self Care for Adults on Dialysis (SCAD) tool. This was administered prior to, four months, and one year after the intervention. Results demonstrated improvement in self-care related to vascular access and fluid management, both significant aspects of being HD-dependent.

Supporting patient choice: an intervention to promote independent dialysis therapies.

Independent dialysis therapies are as effective as in-center therapies but cost only about half as much. This project incorporated a patient focus group to better understand patient perceptions and possible barriers related to choosing independent dialysis therapies. Focus group findings included hardship related to loss of kidney function, the need for support from healthcare professionals, the need for educational materials and recruitment strategies focused on the benefits of independent dialysis, the need for peer support to encourage choice of independent dialysis modality, and support for technical issues. Themes identified by the focus group were used to create two new education tools and a nurse-delivered education program for patients with CKD. Future evaluation will determine whether these efforts lead to an increase in selection of independent dialysis therapies.