The demands of treatment, metabolic consequences of kidney disease and psychosocial impact of major organ failure present a range of obstacles and often immediate problems or even crises that can make focussing on the long term goals of kidney care difficult for healthcare professionals, patients and carers. Yet the goal of care must always be to achieve the best possible state of physical, mental and social wellbeing for the individual, not merely the correction of chemistry or absence of life-threatening symptoms. There must be a greater emphasis on achieving the best recovery and reablement to foster as complete rehabilitation as possible. The new “3 Rs” – making sure we use our skills and do everything in our power to help people with kidney disease return to as best possible state of health and social functioning that can be reached. That’s a lot more than just planning for dialysis in the clinic or ensuring early discharge from the ward. It’s even more than expediting a live donor kidney transplant to avoid the need for dialysis.
The RRR phase is more complex in advanced kidney care than many other long term conditions with multiple interplaying personal, social, family and comorbidity factors as well as treatment modality defining the appropriate interventions, amount and mix of care needed and outcome. Goals need to be sensitive to patients’ health beliefs and shaped by individuals’ values. The aspirations, views and wishes of our patients need to be informed by our expertise in understanding disease mechanisms, treatment options and a synthesis of the evidence-based practice. The RRR component of the kidney care pathway is predominantly delivered and “managed” by nurses and the allied healthcare professionals of the renal multiprofessional team with the patient at the centre increasingly taking on self management, often supported by carers and linked to community teams. When that works and the person gets themselves back to best possible health it’s great – witnessing a patient you have cared for stepping up to the podium at the transplant games or photos of an 80th birthday celebration after 10 years on dialysis provide iconic images of that success. That doesn’t always happen. After diagnosis, effective intervention and seeing the treatment response, there is some pressure to move onto the next acute patient. Our current service design is modelled on the 20th Century cure paradigm which is often inefficient for the management of long term conditions and multi-morbidity in the 21st Century. It also frequently delivers an inadequate service for patients by setting limited goals such as “safe to go home”. There is often a very limited or no attempt at reablement (restoration of previous capacity or employment) and a poorly managed interface with social care characterised by delays, unnecessary assessment criteria failures and avoidable readmissions. It is illogical that social care is not involved at the earliest opportunity to both minimise and anticipate need. The current service model perpetuates and compounds the often large step-down in support from ward or main renal unit dialysis care to community and home care.
The importance of exercise in rehabilitation may seem obvious but it is often overlooked in kidney care despite a good evidence based for its therapeutic efficacy across the whole chronic kidney disease pathway from early diagnosis through to dialysis. The importance of physical activity in preventing and treating many diseases and conditions is indisputable, as regular readers of this blog will know with the recent publication of the Cochrane review and the Swedish monograph which has its own kidney disease chapter.
Rehabilitation is coming into focus nationally because of the high cost of prolonged hospitalisation and the disjointed nature of much of the care of the elderly. This can play to the advantage of people with advanced kidney disease so now is a great opportunity to sit down as a multiprofessional team with some patients and social care colleagues to design care planning in your service with the aim of delivering what patients want, not just what the doctor orders. No reason to wait - the finances of the NHS are moving in that direction but do evaluate. We need more high quality multiprofessional research into patient experience and outcomes in kidney care.