Is patient involvement possible when decisions involve scarce resources? A qualitative study of decision-making in primary care

https://doi.org/10.1016/j.socscimed.2003.10.007Get rights and content

Abstract

Greater patient involvement has become a key goal of health care provision. This study explored the way in which general practitioners (GPs) in the UK manage the dual responsibilities of treating individual patients and making the most equitable use of National Health Service (NHS) resources in the context of the policy of greater patient involvement in decision-making. We undertook a qualitative study incorporating a series of interviews and focus groups with a sample of 24 GPs. We analysed GP accounts of decision-making by relating these to substantive ethical principles and the key procedural principle of explicitness in decision-making. GPs saw patient involvement in positive terms but for some GPs involvement served an instrumental purpose, for instance improving patient ‘compliance’. GPs identified strongly with the role of patient advocate but experienced role tensions particularly with respect to wider responsibilities for budgets, populations, and society in general. GPs had an implicit understanding of the key ethical principle of explicitness and of other substantive ethical principles but there was incongruence between these and their interpretation in practice. Limited availability of GP time played an important role in this theory/practice gap.

GPs engaged in implicit categorisation of patients, legitimating this process by reference to the diversity and complexity of general practice. If patient involvement in health care decision-making is to be increased, then questions of scarcity of resources, including time, will need to be taken into account. If strategies for greater patient involvement are to be pursued then this will have significant implications for funding primary care, particularly in terms of addressing the demands made on consultation time. Good ethics and good professional practice cost money and must be budgeted for. More explicit decision-making in primary care will need to be accompanied by greater explicitness at the national level about roles and responsibilities. Increased patient involvement has consequences for GP training and ways of addressing rationing dilemmas will need to be an important part of this training. Further research is needed to understand micro-decision-making, in particular the spaces in which processes of implicit categorisation lead to distorted communication between doctor and patient.

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

References (42)

  • BMA (2001). Healthcare Funding Review. London: British Medical...
  • BMA (2003). The New GMS Contract, investing in general practice http://www.bma.org.uk/ap.nsf/Content/NewGMSContract,...
  • C.H Braddock et al.

    Informed decision making in outpatient practice, time to get back to basics

    Journal of the American Medical Association

    (1999)
  • C Charles et al.

    Lay participation in health care decision-making

    Journal of Health Politics Policy and Law

    (1993)
  • J Coast

    Rationing within the NHS should be explicitThe case against

    British Medical Journal

    (1997)
  • J Coast

    Who wants to know if their care is rationed? Views of citizens and service informants

    Health Expectations

    (2001)
  • Department of Health (1999). NHS Executive, Patient and public involvement in the new NHS. Leeds: Department of...
  • Department of Health (2000). NHS Executive, The NHS plan: A plan for investment, a plan for reform. London: Department...
  • Department of Health (2001). Involving patients and the public in healthcare: A discussion document. London: Department...
  • I Deutscher

    Words and deeds social science and social policy

    Social Problems

    (1966)
  • L Doyal

    Needs, rights and equityMoral quality in health care rationing

    Quality in Health Care

    (1995)
  • Cited by (66)

    • Wasting the doctor's time? A video-elicitation interview study with patients in primary care

      2017, Social Science and Medicine
      Citation Excerpt :

      This gatekeeping role is key to ensuring overall efficiency of the system and avoiding unnecessary medical interventions (Starfield et al., 2005). Rationing is an inherent component of the British healthcare service (Mechanic, 1995), and general practitioners in particular are aware of the financial constraints within which they must operate (Jones et al., 2004). Increasing demand resulting from shifting demographics and advancing technology contributes to added pressure on the health service to control cost.

    • Developing a model of decision-making about complementary therapy use for patients with cancer: A qualitative study

      2012, Patient Education and Counseling
      Citation Excerpt :

      Patients attending sessions with complementary therapists value the extended consultation time, the in-depth attention given to their personal experience, the empathy shown by practitioners and their willingness to include the patient in the process of care [8–12]. Complementary therapy consultations are characterised as encouraging shared decision-making, and enabling patients to become active partners rather than passive recipients of their care [8–10,12,13]. In mainstream consultations, there is evidence that patients do not feel able to disclose elements of their personal experience, such as psycho-social and emotional factors [14–23].

    View all citing articles on Scopus
    View full text