Shared decision making is moving centre stage. A Google search a few weeks ago brought up 9,800,000 results and it figures prominently in “ Liberating the NHS ”, the Con-Lib White Paper on health. During the last few decades decisions about health have been shifting from a paternalistic “doctor knows best” approach to an autonomy based model where the service user or “customer” knows best. The move was perhaps most dramatic in the United States. Alexander Kon writing recently in the Journal of the American Medical Association explains that time was one of the reasons that doctors were willing to transition from paternalistic care to patient driven care in the 1980s and 1990s. Kon said “it was very practical, it takes less responsibility, it has less burden, and it seemed to be attractive to the patients. But what we have come to find is that patients don’t often get what they want from that”. Kon argues that patients want their clinical teams not just to give information, but also to take part in decisions. In the UK the pendulum never swung that far. When choice entered the healthcare management vocabulary it seemed to focus on the who, where and when appointments would be offered – extending opening hours to allow evening appointments or choice of which clinic to go to rather than choice in decisions about health. Now there is a move toward shared decision making internationally. This “meeting in the middle” can therefore be seen both as a mid-Atlantic meeting of North American and European models of care and as patients and clinicians meeting as equal partners.
Although shared decision making is becoming the new standard, it remains unclear to many exactly what “shared decision making” means. The goal of shared decision making is to make decisions in a manner consistent with the patient’s wishes. The patient drives the process. The phrase “no decision about me, without me” captures the essence of the meaning. Shared decision making does not mean the same thing in all cases and therefore can best be understood as a continuum. At one end, the informed physician telling the patient what to do and at the other end the physician informing and the patient deciding.
The idea is to find the mid space on the continuum the patient feels most comfortable and this requires clear communication and dedicated time. Actively listening is essential so that doctors or nurses do not inappropriately take too much control or force patients to bear more of the burden than they wish. Getting that balance right is part of the art of clinical care; it requires training and experience but can be facilitated by a range of techniques and supported by tools or patient decision aids.
This is relevant across the whole of kidney care from risk assessment and management through to advanced kidney disease, replacement therapy and palliative care. Decisions about lifestyle, for instance in the management of hypertension; diet, exercise, moderation of alcohol and smoking cessation, are more likely to ensue if they are accompanied by behavioural change plans that encourage and promote health. Prescribing of medicines should always be preceded by discussion of the indications, potential adverse events and evidence base for the treatment. The patient’s views on the likelihood of a particular class of anti-hypertensive drug causing impotence or the effect of the route of administration, oral or intravenous, of cyclophosphamide in the treatment of vasculitis on subsequent fertility need to be explained by the clinician, considered by the patient and factored into the prescribing decision. The timing of ultrasound scanning in those with a family history of polycystic kidney disease should take into account the possible negative impact – psychological, emotional and financial – of a positive scan as well as the utility of accurate diagnosis. People need time and space to consider these big decisions if the best outcomes are to be achieved.
Shared decision making is now a central pillar of the NHS quality and efficiency programme. In the USA, formal adoption of shared decision making within care planning has been shown to improve experience of care, quality of outcomes and costs. Costs fall because when shared decision making is introduced the uptake of complex interventions such as coronary artery bypass grafting, prostatectomy or hysterectomy usually falls. In the UK most of the experience is in orthopaedics. When patients who are technically suitable for knee replacement surgery use shared decision making aids in reaching a final choice, fewer elect for surgery compared to those who recieved traditional clinic based care alone. But more of those who do proceed to surgery get better outcomes. Both groups using the decision aid, those who go forward for surgery and those who decide not to, have high levels of satisfaction. Fewer operations take place, outcomes of operations improve and total costs are less. As Steve Laitner (GP, public health physician and National Lead for shared decision making) says this isn’t rationing care, it’s rational care – “give the patient what they need and know less; give the patient what they need and know more”. This recognises that drugs, surgery and other treatments have negative as well as beneficial consequences and that one size doesn’t fit all.
The patient decision aids that are available attempt to explain risk and potential benefit in the context of the patient’s values and beliefs taking into account other relevant medical and social factors including co-morbidities and social care needs.
The choice of modality of renal replacement therapy or the decision not to have dialysis but instead to receive conservative kidney care is one of the most important decisions for those with advanced kidney disease. It’s a part of the pathway where we know that there is large variation between kidney units; both in how they approach and present issues and also how staff support patients facing these options of pre-emptive and live donor transplantation, home dialysis (both peritoneal dialysis and home haemodialysis) and conservative kidney care. Care planning in the 12 months before the need for renal replacement therapy is vital for good outcomes in end stage renal failure.
“All children, young people and adults approaching established renal failure are to receive timely preparation for renal replacement therapy so the complications and progression of their disease are minimised, and their choice of clinically appropriate treatment options is maximised. Markers of good practice
Referral to a multi-skilled renal team, where possible at least one year before the anticipated start of dialysis treatment, for appropriate clinical and psychological preparation. This principle should also be followed for people with a failing transplant.
Accelerated process with intensive input from the renal team for those who present late to renal units or as acute uraemic emergencies.
People with ERF given information about all forms of treatment so that an informed choice can be made.
Patients put on the national transplant list within six months of their anticipated dialysis start date if clinically appropriate.
Anaemia treated to maintain an adequate haemoglobin level.
Standard 2, Renal NSF
Great progress has been made in the creation of vascular access before starting dialysis. For many patients, engagement in the choice agenda has been less dramatic. One patient, now on home haemodialysis remarked recently to me that he “learned about home haemodialysis in Denmark”. Needless to say, he is neither Danish nor does he live in Denmark! He had been on RRT for over 10 years before he heard of home haemodialysis. Dedicated time must be provided to support patient choice in renal failure. Perhaps by consciously adopting a shared decision making model of care in advanced kidney disease, with healthcare professionals paying more attention to active listening, gaining a better understanding of patients’ values, how they learn and make choices, we might see improvements in the experience of care, patient related outcomes and clinical outcomes.