Is patient involvement possible when decisions involve scarce resources? A qualitative study of decision-making in primary care
Introduction
Patient involvement in medical decision-making is being promoted in a range of health care systems as an ideal form of the doctor–patient relationship (Jadad, Rizo, & Enkin, 2003). However, the conceptualisation of patient involvement is not clear. Ambiguities have been highlighted with respect to the concept of patient-centredness (Mead & Bower, 2000) while differences have been identified between methods of patient-centred communication and shared decision-making (Elwyn, Edwards, Gwyn, & Grol, 1999; Wensing, Elwyn, Edwards, Vingerhoets, & Grol, 2002). Furthermore, research involving primary care physicians in the USA suggests that the complexity of decision-making is an important factor in determining the extent to which patients are involved (Braddock, Edwards, Hasenberg, Laidley, & Levinson, 1999).
In the UK, patient involvement has become a key feature of recent changes to the organisation and delivery of health care (Department of Health (1999), Department of Health, 1999 (2000)). The Health and Social Care Act 2002 (The Stationery Office, 2001) made public involvement a duty of Health Authorities and Trusts. In addition, the National Health Services Reform and Health Care Professions Act 2002 (The Stationery Office, 2002) made provision for setting up The Commission for Patient and Public Involvement in Health to promote involvement of members of the public in health care decision-making. Patient involvement in the NHS includes an emphasis on patients’ duties to use services responsibly (Department of Health, 2001).
In parallel with these developments, general practitioners (GPs) have been drawn into decisions about allocation of resources. Primary Care Trusts (PCTs) now commission a range of health care services from community care to hospital treatment. The new GP contract (accepted by GPs on 20th June 2003) appears to recognise that GP time is a finite resource (BMA, 2003). How resources are allocated in the NHS however, remains the subject of considerable debate (BMA, 2001).
Doctors are required to treat individual patients to the best of their ability; simultaneously, they are expected to fulfil a duty to society to make the most equitable use of resources overall. The Royal College of Physicians recommends that doctors be involved in setting NHS priorities along with other stakeholders and that the lack of affordability of some medicines that are currently available should be discussed openly within the context of the doctor–patient consultation (Royal College of Physicians, 2000). Within primary care, tensions arise from the dual responsibility of providing for the needs of individual patients and the needs of society, perhaps most clearly manifested in the conflict for GPs between the role of commissioning care for populations, and the role of patient advocate (Royal College of General Practitioners, 1999).
Participation in health care decision-making has not been adequately evaluated (Charles & DeMaio, 1993) but it is useful to distinguish between public and private participation. Private participation refers to the involvement of individuals in their own care and treatment while public participation refers to involvement in decision-making processes concerning service planning and delivery, service evaluations and consultations over future service provision. It refers to a democratisation of decision-making with the public assuming greater responsibility for decisions regarding the wider aspects of health and social policy (Anderson, Florin, Gillam, & Mountford, 2002).
There is limited research on the way in which funding constraints influence the decisions of doctors, or about the criteria used when allocating scarce resources to individual patients. While there is a considerable literature on prioritisation of health care resources at a macro level (Klein, Day, & Remayne, 1996; New, 1997), there has been relatively little empirical research at the level of the doctor–patient relationship in primary care. Consequently, we are largely ignorant about communication between GPs and patients about resource allocation (Light & Hughes, 2001; Ayres, 1996). Furthermore, although there has been considerable debate about the relative value and efficacy of explicit and implicit decision-making, there is as yet no consensus on whether and how patients should be involved in health care rationing (Doyal (1995), Doyal (1997); Coast, 1997). Recent research suggests that opinion is divided on the need to be explicit and that there is some dissonance between health workers and the public. The former perceive rationing as inevitable while the latter focus on the lack of political will to increase funding and the ‘waste’ associated with unnecessary bureaucracy in the NHS (Coast et al., 2002). In a study of the views of UK citizens, a majority wanted to know about rationing of their health care and to be given an explanation for the decisions that had been reached (Coast, 2001). The researchers concluded that policies promoting increased explicitness with the public about the rationing of health care would be welcomed but added that greater explicitness goes hand in hand with a greater potential for conflict between patient and practitioner.
Our study explored the way in which GPs manage the dual responsibility of treating individual patients and making equitable use of NHS resources in the context of the push for greater patient involvement in decision-making (including the actual and potential role of the patient in the decision-making process). The fieldwork for the study was undertaken during a period of considerable change in UK primary care, such as new funding arrangements introduced with primary care groups and primary care trusts (PCGs/PCTs), clinical governance and demand management.
Section snippets
Methods
Between September 2000 and November 2001 we undertook a series of interviews and workshop focus groups with a sample of 24 GPs.
General practitioner's perceptions of patient involvement
GPs saw their role as one of professional advisor; there to provide information to patients. For example, one GP talked about discussing options and the various outcomes that such options may lead to.
I suppose if you give people options and they make a decision based on the options that you present them with, you could argue I suppose that they are all shared. You could also argue that they are all one-way because the doctor holds the reins on what the options are. It depends which way you look
Discussion
This study suggests that if patient involvement in health care decision-making is to be increased, then questions of scarcity will need to be taken into account. GPs saw patient involvement in positive terms but for some GPs, involvement served a more instrumental purpose and was used as a ‘tool’ that assisted them in managing or persuading patients. It remained the case, however, that most GPs tended to identify strongly with the role of patient advocate. However, they experienced role
Acknowledgements
The study was funded by the Department of Health, Health in Partnership Programme and NHS R&D support funding. The latter was administered by the East London and Essex Network of Researchers (ELENoR). We would particularly like to thank the GPs and patients who participated in this research.
We would also like to thank the following for their advice and support Kambiz Boomla, Nicky Britten, Colin Campbell, Yvonne Carter, Caroline Davies, Chris Derrett, John Eversley, Christine Farrell, Tim
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