Q: As the number of dialysis patients increases year on year with some patients now dialysing for many years, what plans are afoot to tackle the resulting complications both physical and mental.
A: Thank you for raising the issue of the health and mental wellbeing of people on dialysis. You are quite right about the numbers of people on dialysis continuing to rise year on year. Most people on dialysis are not currently transplant listed and they will therefore be on long term dialysis for the rest of their lives. Such patients often have a number of additional medical problems over and above the fact that their kidneys have failed. Indeed, co-existing heart disease or blood vessel disease is often the reason individuals are deemed unsuitable for transplantation.
The quality of life for people on dialysis is influenced by a range of factors including physical health, mental wellbeing, dietary and fluid restrictions, psycho-social issues, transport and the ability to dialyse away from their base unit or home. The Renal National Service Framework describes a vision for the empowerment, support, care and treatment of children, young people and adults with kidney disease to optimise patient experience and outcomes. It has a set of standards, quality indicators and good practice markers that must be achieved to make world class kidney care a reality.
For people on dialysis, the experience often is the outcome and if we are to optimise patient experience and outcomes, attention to all the needs of those with advanced kidney disease should start long before dialysis is required. The year before renal replacement therapy is likely to be needed is a crucial time to address medical, both physical and mental, psychological and social issues so that the transplant, dialysis and conservative care options can be fully explored and informed choices can be made. This should take into account individual decision making styles and peoples preferences , needs, desires and lifestyles as well as their physical, mental, psychological and social situation. Shared decision making is the way in which the multi-disciplinary kidney care team communicates to the patient personalised information about the options, outcomes, probabilities and scientific uncertainties of the various treatments and the patient communicates his or her values and relative importance he or she places on the potential benefits and harms. Shared decision making is a fundamental part of care planning and promotes the best choice in what otherwise can be a complex and overwhelming situation. Every kidney patient is entitled to receive care planning and have their own individual care plan addressing all these needs.
But not everybody who needs dialysis receives this multiprofessional preparation and choice to acheive the best outcome for their own wishes and circumstances. We have however seen substantial improvements over the last 5 years. The number of people with end stage kidney disease arriving at kidney units requiring immediate emergency dialysis has fallen by about a third since the introduction of strategies to identify kidney disease earlier by the NSF. Those that do arrive without adequate preparation should receive intensive input from the renal team so they too have an opportunity to choose the type of dialysis, consider transplantation or , where appropriate, choose conservative kidney care. Timing of such discussions when patients have been very unwell can be tricky and I think that we can do better both in identifying more people early so fewer “crash land” and also in ensuring that sufficient attention is paid to consideration of benefits and risks of different choices made by patients when they start dialysis in this unplanned way.
People who are on dialysis come in all shapes and sizes – some are young, some are old, some what the freedom of managing their own condition at home, others require the support of the kidney team to optimise care so the care plan has to be personalised – we will fail if it’s a tick-box exercise. We do, however, know what complications to expect and both patients and staff need to be looking out for the early warning signs so the complications of dialysis can be minimised. For those on haemodialysis, having an arterial venous fistula is the key to good outcomes and reduced complications including infections and vascular events which are major medical problems for people receiving dialysis. There have been significant improvements in vascular access over the past 5 years as evidenced as by a reduction in more than half of the number of MRSA blood stream infections now seen. There Is still big variability between units and the targets set by the Renal Association have not been achieved in most units yet; the fact that in some units 95% of people receive dialysis use a fistula is very encouraging, it means that units where only 65% of people have a fistula, or worse still only 50%, can do considerably better. One of the national Kidney Care Audits that I am sponsoring focuses on vascular access with the aim of being able to regularly measure this quality marker and achieve year on year improvement in every kidney unit.
One of the many challenges in kidney care is that most things are not as clear cut as the need for good vascular access for long term wellbeing for people on haemodialysis. The evidence base for clinical practice in dialysis is much less than in many other conditions such as heart disease or cancer because historically there hasn’t been as much research in kidney care as other areas. However, Kidney Research UK, the Renal Association and the British Renal Society are starting to plug that evidence gap. We can also draw parallels from other areas, particularly heart disease and until proven otherwise, it makes sense that people on dialysis, because they have such high rates of heart disease, should receive the same sort of treatments as people without kidney disease who have had heart attacks where we have much more research and know more clearly what should be done.
There can be no health without mental health. This has been a neglected area in kidney care. We know that up to 30% of people on dialysis will experience a period depression. Being on dialysis is often a psychological as well as a physical strain for families as well as patients. R ecent guidelines on the identification and treatment of depression in people who already have an established physical illness has recently been produced by the National Institute for Health and Clinical Excellence (NICE), these guidelines are very relevant to kidney services. There are now good tools to screen for depression in the pre-dialysis and dialysis population and there are pharmacological, behavioural and cognitive treatments that can help alleviate depression in people receiving dialysis. This should not be neglected.
The social and psychological support workforce play a fundamental role in renal care helping patients and carers address the practical, economic, social and psychological problems associated with chronic disease, disability and eventually death and bereavement. It is a concern that social workers and psychologists are in such short supply on dialysis units. The Renal Special Interest Group of the British Association of Social Work carried out a study of renal social work provision in 2007 and disappointingly found that the number of renal social workers had fallen by 11% since 2002. The Kidney Alliance has also highlighted that social work appears to be one of the most severely under-resourced areas of renal services, with staffing at levels falling far short of those required to provide an adequate service. Yet some places are successfully addressing this problem. In 2008 Wirral University Teaching Hospital analysed the requirements for their patients. Their review found that anxiety and depression were common and with the support of the Hospital Trust the team have now employed a full time psychologist and are training members of the nursing staff in counselling. It’s a false economy not to treat depression, not to provide psychologist support for people with advanced kidney disease and not to address the social care needs of those on dialysis. Mental illness, psychological distress and unresolved social care issues result in an increased need for hospital admissions and much longer lengths of stay than in people who have these needs well supported, Unnecessary admissions and long length of stay waste money that could be used in improving the quality of care for people with kidney disease.
So, in summary, progress has been made in some areas but there’s much to be done – particularly in terms of mental wellbeing, psychological and social care. That is the reason that care planning remains high on the agenda of NHS Kidney Care and why we are support a move to a chronic disease management model of care where the patient is at the centre, where education, empowerment and encouragement for the patient on dialysis are given as much importance as some of the physical measurements we make to assess quality , and where care is delivered in a true partnership with the patient. There is good data to show that the more a person is involved in their own treatment decisions and management plans, the better the outcomes.
Published in Kidney Life magazine 2010