Justification for a home-based education programme for kidney patients and their social network prior to initiation of renal replacement therapy Emma K Massey, 1 Medard T Hilhorst, 2 Robert W Nette, 3 Peter J H Smak Gregoor, 4 Marinus A van den Dorpel, 5 Anthony C van Kooij, 5 Willij C Zuidema, 1 R Zietse, 6 Jan J V Busschbach, 7 Willem Weimar 1 ABSTRACT In this article, an ethical analysis of an educational programme on renal replacement therapy options for patients and their social network is presented. The two main spearheads of this approach are: (1) offering an educational programme on all renal replacement therapy options ahead of treatment requirement and (2) a home- based approach involving the family and friends of the patient. Arguments are offered for the ethical justification of this approach by considering the viewpoint of the various stakeholders involved. Finally, reflecting on these ethical considerations, essential conditions for carrying out such a programme are outlined. The goal is to develop an ethically justified and responsible educational programme. INTRODUCTION Renal replacement therapy When an individual faces loss of renal function and requires renal replacement therapy (RRT) they have a number of treatment choices: haemodialysis, peritoneal dialysis, or transplantation with a deceased donor kidney or with a living donor kidney. The main benefit of dialysis is maintenance of life, however, the patients’ physical and psycho- logical condition is considerably compromised. 1 2 Morbidity and mortality rates while on current dialysis treatment modalities are higher than when the patient receives a transplant. 34 Trans- plantation therefore offers an alternative. However, there is a worldwide shortage of kidneys from deceased donors available for transplantation. In 2009 in the EuroTransplant zone there were 11010 patients on the waiting list for a kidney transplant while only 3558 were actually performed, and the median waiting time for deceased donor kidney transplantation was 4.5 years (http://www.euro- transplant.org/). While waiting for a deceased donor kidney transplant (DDKT) patients are treated with haemodialysis or peritoneal dialysis. Living donor kidney transplantation (LDKT) provides an alter- native to DDKTand confers sizeable advantages for graft and patient survival. 5 6 With increasing acceptance of LDKT in many countries, there has also been an increase in kidney transplantations that take place prior to commencement of dialysis, so called pre-emptive transplantation. Pre-emptive transplantation offers optimal graft and patient survival when compared to living donor kidney transplant after dialysis. 578 Furthermore, the lengthy waiting time for a deceased donor as well as the decline in quality of life, comorbidity and access surgery associated with dialysis can be avoided. 4 9 Return to employment is also highest among pre-emptive transplant recipients. 10 Pre-emptive transplantation is economically advantageous for health insurers as it avoids the considerable costs of dialysis. However, some theo- retical disadvantages of pre-emptive transplantation have also been highlighted. 8 Concerns reported in the literature include confronting the patient with kidney disease in a period that is often asymptom- atic, performing transplantation too early, unnec- essary transplantation of patients who might have eventually recovered renal function, and risk of non- adherence in patients who have not experienced the adverse effects of dialysis or the burden of kidney disease in the last stage prior to RRT. However, these concerns, in our view, do not outweigh the benefits of pre-emptive transplantation. In The Netherlands, 43% of living donor trans- plants were conducted pre-emptively in 2009. 11 Therefore 57% of patients transplanted with a kidney from a living donor underwent dialysis first. Even taking into account the concerns regarding pre-emptive transplantation, this is an undesirable situation given the important benefits of this treatment. In order to make pre-emptive transplantation a real option it must be included in patient education prior to commencement of RRT. Patient education In order to make an informed decision on treatment patients need to be educated on these options prior to initiation of RRT. It is possible to identify a number of medical, individual, social, organisa- tional barriers to fully informed decision making about first form of RRT. 12 Individuals may not be aware of all the treatment options available to them prior to RRT initiation, they may believe that transplantation must be preceded by dialysis or that transplantation is a last resort, and they may have a lack of knowledge or misconceptions about risks and financial consequences of the various RRT options. 12 Patients may also experience emotional barriers such as fears regarding finding a living donor, health risks to the living donor, the impact of donation on relationships and fear of surgery. 13 14 For patients wishing to pursue pre-emptive trans- plantation, a living donor is usually required (in The Netherlands). Research has shown that living donation is a difficult topic to discuss and patients 1 Department of Internal Medicine, Kidney Transplant Unit, Erasmus MC, Rotterdam, The Netherlands 2 Department of Medical Ethics and Philosophy, Erasmus MC, Rotterdam, The Netherlands 3 Department of Internal Medicine, Sint Franciscus Gasthuis, Rotterdam, The Netherlands 4 Department of Internal Medicine, Albert Schweitzer Ziekenhuis, Dordrecht, The Netherlands 5 Department of Internal Medicine, Maasstadziekenhuis, Rotterdam, The Netherlands 6 Department of Internal Medicine, Nephrology, Erasmus MC, Rotterdam, The Netherlands 7 Department of Medical Psychology and Psychotherapy, Erasmus MC, Rotterdam, The Netherlands Correspondence to Dr Emma K Massey, Department of Internal Medicine, Kidney Transplant Unit, Erasmus MC, Room D-408, Postbus 2040, 3000 CA Rotterdam, The Netherlands; e.massey@erasmusmc.nl Received 10 January 2011 Accepted 14 April 2011 Massey EK, Hilhorst MT, Nette RW, et al. J Med Ethics (2011). doi:10.1136/jme.2011.042366 1 of 5 Global medical ethics JME Online First, published on May 25, 2011 as 10.1136/jme.2011.042366 Copyright Article author (or their employer) 2011. Produced by BMJ Publishing Group Ltd under licence.