Making consent patient centredBMJ 2003; 327 doi: https://doi.org/10.1136/bmj.327.7424.1159 (Published 13 November 2003) Cite this as: BMJ 2003;327:1159
- John Bridson (), acting director of studies, MSc in health care ethics1,
- Clare Hammond, specialist registrar in cardiology2,
- Austin Leach, consultant in anaesthesia and pain management2,
- Michael R Chester, director2
- 1Unit for the Study of Health Care Ethics, Department of Primary Care, University of Liverpool, Liverpool L69 3GB
- 2National Refractory Angina Centre, Cardiothoracic Centre, Liverpool NHS Trust, Liverpool L14 3PE
- Correspondence to: John Bridson
- Accepted 28 August 2003
Taking the time to explore patients' objectives not only improves consent procedures but may avoid some interventions altogether
Guidance on obtaining patients' consent for treatment encourages doctors to consider their needs and priorities when disclosing information.1 However, the focus on disclosure, which has arisen from the need to tell patients about risk, has meant not enough attention is given to patients' objectives. To make consent properly patient centred, clinicians need to ask patients what they want from treatment before they discuss treatment strategies.2 We believe this approach is essential, especially in the management of chronic illness. It should also help protect reticent patients, whose objectives may differ from the assumptions made by clinicians.
Several UK organisations have published guidance on improving procedures for consent in the past few years (box 1). Despite this, the BMA's working party on consent stated that “current awareness of the relevant ethical and legal principles relating to consent among the medical profession is largely inadequate.”3 Although other initiatives have sought to improve guidance, the working party emphasised the need to improve implementation of what was already recommended as best practice.
The BMA's view, that patients would benefit if more clinicians were familiar with guidance on consent, may be right. However, our experience suggests that even full compliance with current guidance may not prevent unnecessary procedures in some patients.6 Box 2 gives an example of one of the many patients at the National Refractory Angina Centre who conclude that coronary intervention is not necessary once they are given an opportunity to define their objectives and the risks are put in context. In this patient's case, only his first angioplasty was consistent with his objectives as it improved his chances of survival. The other procedures were aimed at relieving symptoms and may be associated with an increased risk of death.7
Box 1: Recent developments in guidance on consent practice
1998: GMC encourages clinicians to find out about patients' individual needs and priorities when deciding what information to disclose about interventions.1
2000: NHS Plan calls for change of culture in consent practice “to recognise the central importance of the rights of each patient”4
2001: Report of the Bristol Royal Infirmary inquiry calls on clinicians to acknowledge patients as partners with different but equal expertise5
2001: BMA consent working party emphasises consent as a process that gives patients the opportunity to express concerns about treatment3
2002: New model consent policy and consent forms implemented, incorporating check list to ensure clinicians disclose appropriate information when seeking patients' consent
Information disclosure: standard and content
For consent to be valid, patients must be competent to make the particular decision and give consent voluntarily after receiving appropriate information. The issue of what constitutes appropriate information incorporates two questions: firstly, what is the standard for determining if clinicians have properly discharged their duty to disclose information and, secondly, what categories of information should be discussed?
Two standards for disclosure have been prominent. A professional standard applies in England and Wales. This requires clinicians' practice to be “in accordance with a practice accepted as proper by a responsible body of medical men” of ordinary skill in the relevant clinical specialty.8 In Mrs Sidaway's landmark case, the House of Lords rejected her claim that a surgeon was negligent in not disclosing a risk of spinal cord damage, which she subsequently sustained.9 Four of five Law Lords found that a responsible body of neurosurgeons in that position would not have disclosed the risk. Although recently courts have been willing to assert their ultimate authority, they rarely over-rule medical opinion.10
Box 2: Case history
A 44 year old man was first admitted to hospital with a myocardial infarction in 1997. Two months later, he presented with recurrent angina. Angiography showed moderate left ventricular impairment and two vessel coronary disease. He had angioplasty and stenting, but over the next year he was admitted 11 times with chest pain. He had five angiograms and three complex coronary interventions, which gave short term pain relief. After four further admissions, he was referred to a psychiatrist, who diagnosed depression and prescribed antidepressants with little effect. Over four more years he had multiple admissions, three angiograms, and three angioplasty procedures. When further angiography showed no revascularisable disease, he was referred to a refractory angina programme.
Patient's beliefs and objectives
Counselling enabled him to articulate his underlying concerns. He believed each episode of angina was a mini-heart attack that might kill him. His main objective was to stay alive so his son would not be taken into social services care. He had believed his frequent admissions and coronary interventions were necessary to keep him alive.
Explanation of the pathophysiology of coronary artery disease and angina helped correct his beliefs about his prognosis and enabled him to become more involved in decisions about his management. He decided against further coronary interventions to relieve symptoms as he thought that any procedure related risk of mortality was incompatible with his objective of surviving to oversee his son's welfare. For the past two years he has been able to manage his angina with simple non-invasive measures,including relaxation, and has not been admitted with chest pain in the past 21 months.
Some other jurisdictions apply a reasonable patient standard. One influential US judgment asserted that “it is the prerogative of the patient, not the physician, to determine where his interests seem to lie.” A risk should be disclosed if “a reasonable patient in what the doctor knows or should know to be the patient's position, would be likely to attach significance to the risk or cluster of risks in deciding whether or not to forgo the proposed therapy.”11
Neither the professional standard nor the reasonable patient standard provides the right framework for patient centred consent. The professional standard is paternalistic, emphasising what clinicians consider appropriate to disclose rather than what patients want disclosed.12 The reasonable patient standard is inherently hypothetical, upholding the autonomy only of patients who behave like a typical patient. It asks what risks should be disclosed to a “reasonable” patient in the particular patient's position, not what risks the particular patient would regard as important. Lord Scarman applied the reasonable patient standard in the Sidaway case but still rejected her claim because a reasonable person in her position would not need to know about the risk to be able to consent.
To achieve patient centred consent we need to change our approach from disclosing information to sharing information. At present, the various guidelines all agree about what categories of information should be discussed. Clinicians should disclose what treatments and their alternatives broadly involve, their foreseeable risks and benefits, and the implications of declining treatment.13 However, clinicians are not required to ask patients what they want. Such an obligation is the natural response to the Bristol inquiry's recommendation that healthcare professionals should adopt “the notion of partnership between the healthcare professional and the patient, whereby the patient and the professional meet as equals with different expertise.”5
Putting patients' objectives first
Patient centred consent must be founded on the patient's objectives. The GMC's thorough guidance encourages clinicians to “find out about patients' individual needs and priorities [as their] beliefs, culture, occupation or other factors may have a bearing on the information they need in order to reach a decision.”1 However, suggesting treatment then tailoring information disclosure to patients' priorities may give only a patient centred veneer to disease centred management.
Patient centred practice requires clinicians to offer patients an opportunity to participate in a shared decision about treatment options.14 In our experience, patients who want to share decisions find it easier to do so if the process begins with an exploration of their objectives. Only then should treatment options be considered and relevant information disclosed. Discussion of risks, benefits, and alternatives has greater resonance for patients if it is put in the context of their expressed objectives.
Discussing objectives may seem superfluous in simple cases when the benefits of intervention seem obvious but the risks are not. For example, a clinician might assume a patient with hay fever understands the benefits of an antihistamine but acknowledge the basic duty to disclose its sedative side effect. However, our experience at the National Refractory Angina Centre suggests clinicians make similar assumptions about what patients expect from invasive procedures. Many patients are uncomfortable questioning clinicians and may not declare their objectives unless asked.3 The onus, therefore, is on clinicians to explore patients' aims rather than merely discussing risks and benefits associated with procedures.15 Clinicians can then be led by what patients want, rather than by professional assumptions about management of a disease.
Challenges for doctors and patients
Ultimately, it is for patients and their carers to decide if a treatment is appropriate. To do so, patients must be competent and decide voluntarily on the basis of appropriate information. This must include a realistic assessment of likely benefits as well as a discussion of the risks and alternatives. To give this information clinicians need to ask patients what they count as a benefit. The question may be challenging for patients, and some may prefer not to share in the decision making process.16 Chronically ill patients will often have to compromise because what can be achieved by treatment falls short of their ideal health state. Some, though competent to consent, will not be able to state an objective. Patients may express objectives in terms of life goals—for example, the patient in our case history wanted to avoid his son going into care (box 2)—rather than in disease centred terms, and clinicians will need to be creative to respond with appropriate strategies. Nevertheless, these challenges must be overcome as involvement of patients in setting goals is fundamental to the concept of patient centredness.17 Clarifying patients' objectives is not a substitute for the GMC's guidance on good consent practice. Rather, it provides the ideal reference point for tailoring treatment and information to individual patients' needs. Conversely, if patients' objectives are not established, offers of treatment with even full disclosure of risks, benefits, and alternatives, may yet fail to be patient centred if made in ignorance of what a compliant patient truly wants.
Clinicians have been encouraged to make consent procedures patient centred
Guidance implies this is achieved by tailoring disclosure of information to individual patients' needs
Consideration of patients' objectives has been neglected
Failure to agree objectives can lead to inappropriate treatment
The disclosure based model needs to be replaced by shared decision making, with objectives agreed before treatment is discussed
Contributors and sources Contributors and sources: MRC and AL founded the National Refractory Angina Centre in 1998 to provide an innovative chronic angina service focused on patient defined objectives. CH has collaborated with MRC and AL for the past six years, both as a member of the clinical team and in the centre's programme of research into the management of chronic refractory angina. JB is a graduate in philosophy and theology and in health care ethics, with experience in pain research. He has worked with MRC and AL for the past two years to develop the centre's patient centred philosophy of care and to articulate the wider ethical implications of this approach.
Competing interests None declared.
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