PART 1
THE PRIMARY CARE INTERACTION
1 Autonomy and consent in family medicine
Iona Heath and Jay Bowden
2 Benefits, harms and evidence – Reflections from UK primary healthcare
Margaret McCartney
3 Why it can be ethical to use placebos in clinical practice
Jeremy Howick
4 Compassion in primary and community healthcare
Joshua Hordern
5 The ethics of the family in primary care
Michael Weingarten
6 Culture and ethics in healthcare
David Misselbrook
7 The ethics of complementary and alternative medicine (CAM)
Nevin Mehmet and Christine Stacey
8 The oughts of omnipractice
John Spicer
9 Micro-ethics of the general practice consultation
Roger Neighbour
10 Analysing an ordinary consultation
Rafik Taijbee
11 The voice of the patient
Rosamund Snow
1 Autonomy and consent in family medicine
IONA HEATH AND JAY BOWDEN
Defining autonomy
Relational accounts of autonomy
Health literacy
Tensions in the primary care consultation
References
The word ‘autonomy’ has its origins in Greek (auto meaning ‘self’ and nomos meaning ‘law’). Whilst the philosophical concept of autonomy is often traced back to Kant, there have been many important contemporary contributors, each of whom brings their own particular perspective. Perhaps as a result, there is no uniformly agreed definition.
For Kant, autonomy was a moral concern, relating to the ability to govern one’s actions through rational judgement.1 As such an autonomous person would be able to behave in a morally correct manner without the need of external laws. More recently, others such as Lévinas have argued that autonomy is selfishly grounded entirely in one’s own personal interests and the contemporary dialogue has moved towards consideration of ‘personal autonomy’, that is, our ability to pursue the direction of our choosing in life, without such moral obligation.2
Dworkin defined ‘autonomy’ as an ability to make decisions that are grounded in our overall objectives and aspirations in life.3 He separated our desires into first-order (our desire to commit an act, e.g. smoking during pregnancy) and second-order desires (our overall preferences, goals and values, e.g. to be a good parent). According to Dworkin, an autonomous individual would be able to critically reflect on his/her first-order desires and only choose to act if they were in agreement with his/her second-order desires. Ekstrom took a similar position, but instead of considering each second-order desire in isolation, he theorised that an autonomous individual would have a coherent position across all desires, which reflects his/her sense of ‘self’.4 Whilst this is more difficult for an external agent (such as a clinician or a lawyer) to determine, the concept is helpful when we consider the preservation of the autonomy of individuals who have lost the ability to express it, for example, when making decisions on behalf of patients with cognitive decline.
Substantive accounts of autonomy, such as that proposed by Wolf, build on theories of personal autonomy by revisiting Kant’s concern with moral responsibility. For Wolf, an autonomous individual must be able to revise his/her actions based upon an ability to identify what is morally correct.5 Within a resource-constrained health system, one could argue that this includes individuals taking responsibility for their own proportionate use of resources. However, accounts in biomedical ethics are usually less bold and are guided by the intimate relationship between autonomy and the ability to provide valid consent.
Beauchamp and Childress are prominent biomedical ethical theorists, whose principle-based approach has been firmly embedded within healthcare education. They suggest that even an autonomous individual can fail to self-govern in certain situations, for example, if they are depressed, coerced or even if they place a high level of trust in others.6 They therefore focus on the autonomy of individual choices and propose that an autonomous decision is:
1. Intentional
2. Based upon ‘adequate’ understanding
3. Without controlling influences
Each of these points poses a myriad of challenges in modern-day primary care, particularly in the context of the current sociopolitical climate, which we will explore in detail.
One of the problems with a principle-based approach is the tendency to present autonomy as a self-evident good irrespective of context and other competing goods. Definitions of autonomy that include moral responsibility are very different from those that do not, and arguably the use of a definition within healthcare that excludes a moral perspective is potentially detrimental. The danger is that the idea of autonomy is used instrumentally merely to negotiate consent.
INFLUENCES IN THE PRIMARY CARE CONSULTATION
To develop a comprehensive view of autonomy in the primary care consultation, we must first consider its influences and stakeholders. Elwyn identified the potential voices in what he described as the ‘postmodern consultation’ (see Table 1.1).7
Table 1.1 A selection of the potential voices in the postmodern consultation
The patient | The pharmaceutical industry |
The patient’s family | Patient groups |
The clinician | The internet |
The clinician’s social network | Media (TV, magazines, newspapers) |
The continuing medical education system | Direct to consumer advertising |
Evidence-based medicine and guidelines | Medical technology industry: investigations, procedures and ‘screening’ lobby |
Independent consumer organisations | |
|
Thus, we can see that clinical decisions are not only influenced by patients and their clinicians but also by the people and organisations that inform them. The contribution of evidence-based medicine and guidelines deserves some elaboration. In resource-constrained health systems, such guidelines are not only concerned with clinical effectiveness but also cost-effectiveness. The socio-democratic nature of healthcare in many western societies (e.g. the National Health Service (NHS) in the UK and Medicare in the USA) has resulted in governments becoming huge stakeholders in healthcare and thus guidelines may also reflect political motivations.8
POLITICAL INFLUENCE ON AUTONOMY IN THE UK
Kant maintained that the protection of autonomy from political subversion was through the determination of rights.1 In the UK this has been enacted through the creation of the NHS constitution, which aims to set out the rights of patients to certain treatments, to choose services and to complain and obtain redress.9 In parallel with this, an internal market has been set up within the NHS in England, with services competing for ‘business’ in a drive to increase efficiency, responsiveness, quality of services10 and, many would argue, to facilitate the privatisation of services. General practitioners’ income has become linked to performance against specific clinical and organisational indicators. The government has also set out to further empower patients by enabling them to write ‘trip advisor’ style reviews of primary care services. The combination of factors has resulted in patients increasingly adopting the role of consumers of healthcare, entitled to certain rights.
However, rights are only valid so long as they do not conflict with the rights of others.1 In a resource-constrained health system, the rights of one individual to avail, for example, an expensive cancer treatment may compromise the affordability of treatments and services for other patients. Whilst (Kantian) citizens have rights and responsibilities, consumers only have rights and the political response has been to create heteronomous rationing systems.11 In England, this is the role of the National Institute for Health and Care Excellence (NICE) and Clinical Commissioning Groups (CCGs), whose guidelines recommend and limit treatments not only on the basis of clinical evidence but also on the basis of cost.
The consequence has been the replacement of clinical paternalism with bureaucratic and political paternalism, which compromises the autonomy of both clinicians and patients. Such paternalism is unresponsive to the individual circumstances and best interests of the patient and may therefore be even more detrimental to their autonomy. Patients may be confused with and frustrated by the conflicting messages, which may undermine the clinician–patient relationship, further challenging the expression of either party’s autonomy.
With this in mind, the extent to which political interventions have enhanced patient autonomy remains unclear.
CASE STUDY
Baby Abdul has recently moved to Abdul came to the UK from Pakistan with his parents. His parents speak little English and a relative acts as an interpreter. Abdul is diagnosed with a serious medical condition and his consultant recommends and prescribes a course of treatment. The next week the family present to their general practitioner (GP), having attended the pharmacy and discovered that the only available preparation contains pork gelatine. His parents are Muslims and are very concerned about the prospect of giving him a non-halal medication. They have spoken to family members and their Imam, who advised them to seek an alternative medication. The GP rea...