The dynamics of
the doctor-patient relationship have evolved over recent decades from a model
of benevolent paternalism to a framework centred around shared decision making,
for which patient awareness of their diagnoses, and hence disclosure of these
diagnoses by healthcare professionals, are prerequisites. Some of the
complexities and challenges inherent in this paradigm shift are illustrated by
the example of chronic kidney disease (CKD), a condition of internationally
high prevalence and low awareness.
CKD has been
included within the Quality and Outcomes Framework since 2006, but is
under-diagnosed in primary care. Whilst
CKD stage 3 to 5 prevalence rates are
estimated at 6% of the adult population, only 4.3% of the population are on CKD
registers. Furthermore, the majority of
the QOF registered population may be unaware of their diagnosis; data from the
Health Survey of England indicate that only 1.5% of men and 1.3% of women had
been informed by their doctors that they had kidney disease.
The reasons
underlying low ascertainment and non-disclosure in CKD are likely to be complex
and inter-related. CKD is still a relatively new priority for primary care with
an associated steep learning curve. Some
practitioners have concerns over the validity of the diagnosis especially in
the elderly population in whom they view CKD as a normal part of ageing. The
need for a three-month period of chronicity for formal diagnosis and the relative
imprecision of estimates of kidney function obtained using the Modification of
Diet in Renal Disease formula, such that individuals may move in and out of the
CKD stage 3 category, continue to present difficulties. Levels of ascertainment
may also be negatively influenced by scepticism regarding the merits of
rigorous blood pressure control in the elderly, although there are data showing
evidence of benefit.
Once CKD has
been identified, there may be uncertainties around the best way to communicate the
diagnosis and its implications to patients. Some practitioners will have
concerns over the stigmatising and anxiety-provoking impact of a CKD label, and
over the consultation time required for a complex explanation of the
significance of the diagnosis. There may be other negative aspects of
disclosure, such as difficulties with insurance.
These issues are
examined in two papers in this month’s British Journal of General Practice.
McIntyre and colleagues from Derby studied
the treatment of 1741 patients registered with CKD stage 3 in 32 general practices.
41% were unaware of their diagnosis.
Males, people aged under 75 years, and those with stage 3B disease or
albuminuria were more likely to be aware of their diagnosis, as were people
with more formal education. This
suggests that diagnostic scepticism was an important factor underlying
non-disclosure, but also that social class and health literacy inequalities
might have been operating. The qualitative study by Blakemans group from
Manchester of 21 general practitioners
and nurses across 11 practices identified significant anxiety across the two
professional groups related to disclosing a diagnosis of CKD and uncertainty
over the utility of a diagnosis of early CKD in the elderly, although the
embedding of early stage CKD within the wider framework of vascular care
described by some clinicians in this study may mitigate the negative impacts of
non-disclosure on patient care .
Whilst a
reluctance to disclose may be understandable in some circumstances, such practice
is divergent from a patient–centred approach to chronic disease management. In
the example of CKD, disclosure can provide a platform to discuss lifestyle
choices, address vascular risk factors and co-morbidities within a model of
collaborative self–management, and will avoid missed opportunities to modify
disease progression. CKD is a risk factor for acute kidney injury that is more
common than has traditionally been recognised, complicating up to 1 in 5 of
acute admissions to hospital and is associated with poor outcome. Patients
should be educated on preventative strategies, including adequate hydration and
the temporary cessation of medications such as renin-angiotensin blocking
agents during periods of acute illness. A diagnosis of CKD is important for
medicines management, both of prescribed drugs such as opioid analgesics and
oral hypoglycaemic agents and those purchased over the counter including
ibuprofen-containing medications. The medico–legal implications of putting
patients on a disease register without their knowledge should also be borne in
mind.
A reluctance to
inform patients of their diagnosis is not restricted to the setting of CKD. European data indicate that up to 20% of
people may be unaware of a prior diagnosis of invasive cancer. Issues of
disclosure resonate in the case of dementia, where arguments advanced against
informing patients have included uncertainties over the diagnosis, feelings of
futility, and the fear of causing distress.
Whilst, with the
plan for all patients to have access to their primary care records by 2015, the
ethical and practical implications of ensuring patients are informed may negate
any protective instincts of primary care, it should be emphasised that the
evidence base on disclosure is poor.
Further research, for example through the Research for Patient Benefit
Programme, is required to determine the extent of non-disclosure of chronic
disease, the degree of variation in disclosure, the influence of disclosure on
patient’s levels of anxiety and activation to self–manage, the impact on behavioural modification and clinical outcomes.
Nevertheless, we should not forget that physicians have a duty, both
morally and legally, to disclose truths that patients could reasonably be
expected to be told in a sensitive way that they will understand. Openness, trust and good communication are
the cornerstones of the doctor-patient relationship. By avoiding difficult
conversations and taking a paternalistic approach to disclosure in certain groups,
we may be failing our most vulnerable patients.
