Q: Whilst many patients at my unit would not want to Dialyze at home, there are many who would like the freedom that this could give them. Is there any chance of persuading Nephrologists, and those who hold the purse strings to give us this choice ?'
A: Thank you for the question. Self Care dialysis offers many advantages for both patients and carers whether that is at home or in hospital. In my experience most if not all patients are willing to understake some level of self management, whether that be taking their own blood pressure, tracking their weight post dialysis or dialysising in the comfort of their own home. I think we need to open healthcare professionals, patients and carers minds to the opportunities self care dialysis can give rather than start with the assumption that dialysis should be hospital based. Evidence increasingly demonstrates the benefits of self care over paternalistic care. Each type of dialysis and the environment within which is takes place has advantages and disadvantages, dialysis at home for example offers freedom and flexibility whilst removing the need for 6 journeys a week to and from the hospital.
People receiving home haemodialysis can tailor their treatment schedule to suit their needs and establish a regimen that “works for them”. Paradoxically, home dialysis for say two hours, five times per week – a total of ten hours per week, provides much better control of symptoms and chemistry than traditional thrice weekly dialysis four hours each run. That’s because fluid removal can be balanced against that day’s intake and the impurities in the bloodstream that the normal kidney excretes are mainly removed in the first hour or hour and a half of dialysis. Slow, long overnight dialysis is another option, which can result in improved blood pressure control without the need for tablets. Many people on home haemodialysis find they can eat and drink normally, need far fewer tablets and feel considerably better. Patient stories like Marion Higgins, Patrick Pearson-Miles and Jonathon Hope tell it much better than I can.
Peritoneal dialysis is a treatment that we should not forget and nor should we ignore its place in allowing people to maintain independence, avoid travelling to hospital and achieving a good quality of life. We now have automated peritoneal dialysis options for overnight dialysis and several units have commenced assisted peritoneal dialysis programmes, where a trained team member helps with the connections and mechanics of peritoneal dialysis.
Standard 4 of the National Service Framework for kidney disease states “renal services to ensure the delivery of high quality clinically appropriate forms of dialysis which are designed around individual needs and preferences and are available to patients of all ages throughout their lives”. So every person has the right to have dialysis at home. Anyone approaching or receiving dialysis, reading this, who is thinking about home treatment, should discuss the options with your kidney consultant and dialysis team. This should focus on fundamental decisions such as whether you wish to have home or hospital based treatment. Then consider which type of dialysis or if no dialysis is preferred (the conservative pathway); or whether transplantation is a possibility. It’s not like choosing which surgeon or hospital to go to for a gall bladder operation. That’s why on World Kidney Day in 2009, NHS Kidney Care, launched a template care plan to stimulate care planning for people with kidney disease. Care, or health planning promotes shared decision making - people need to know the pros and cons of each type of dialysis, transplantation and conservative care. People need to know what the impact of dialysis will be for individuals like themselves – how they will feel and what they will be able to do, what the fluid and dietary regime may look like, what complications might occur and their likelihood and of course information about survival. It’s not possible to predict these things precisely but the clinical team will be able to share local data on such outcomes and increasingly, and appropriately, people approaching dialysis are having the opportunity to discuss the various modalities with individuals and families who have received different forms of dialysis.
Home dialysis also costs less than hospital or satellite based dialysis. We know that the average costs of hospital haemodialysis are about £24K per year and peritoneal dialysis is about £18.5K per year. Haemodialysis at home does need set-up costs – for the room, machine and water treatment but these additional costs are offset by the savings in staffing costs in about a year. So, although the consumable costs for, say, dialysis 5 times per week at home are of course greater than the consumable costs of in-centre dialysis 3 times per week, the overall service costs are considerably less. Not to mention the transport and time savings.
There are several barriers to achieving home dialysis, not only related to perceived financial issues but also involving patients and, perhaps more importantly, clinicians, commissioners and managers. It is apparent that there are a variety of approaches to common difficulties and that even in the best performing units there is scope for improvement. At the recent home dialysis meeting in Manchester there were over 250 people sharing experience, learning from each other’s successes and failures and considering how we as a community can optimise shared decision making so that the “right” proportion of patients are on home therapies. That will not be the same number in every unit – preferences of an inner city population close to a dialysis unit may be very different from those in a rural population with long distances to travel. I was particularly encouraged that so many patients attended the home dialysis meeting and I would like to see patients, clinicians, managers and commissioners championing choice so that high quality clinically appropriate forms of dialysis, designed around the needs and preferences of the individual are available to patients of all ages.
Published in Kidney Life magazine in 2009
