Withholding policies from patients restricts their autonomy
1 Dalby Old Rectory, Terrington, York YO60 6PF
Keeping clinical information about themselves from patients is now considered unacceptable, but transparency about clinical and institutional policies that may affect care is less universal
Introduction
Patient autonomy is regarded as a basic value for modern health care in Western countries.1 The UK regulatory body, the General Medical Council, states that patients must be given enough information to enable them to give informed consent to treatment.2 It does not, however, state whether patients must be told about all the procedures or treatments that might help them or only those provided locally.2 Yet policies about what information to offer or to withhold are crucial to patients' autonomy. In this article I show the harm that can be caused by withholding information about policies from patients and discuss some of the ethical and political issues.
, 百拇医药
Importance of policies
Policies set the context, the opportunities and limits, within which clinical care is provided. They shape health professionals' behaviour, sometimes for decades.3 They may be written down as statements of instruction or as guidelines. Or they may be what every member of a clinical service knows informally. Policies are so taken for granted by many health professionals that if patients question some aspect of care, they may simply be told, "It's hospital policy" as a barrier to further questions, discussion, or negotiation.4 Policies are part of the situation in which patients find themselves, whether in hospital or in their general practitioner's surgery. So arguably, patients who might be affected by specific policies should be told about them.
, 百拇医药
Patients need policy information to make informed decisions about their treatment
Credit: BSIP, RAGUET H./SPL
This does not always happen because information for patients is contentious. Doctors and patient representatives (patients speaking for the interests of other patients5) often hold passionately opposed views about what should be included or excluded.6 Each may see implications in the withholding of policies that the other does not see or thinks unimportant.
, 百拇医药
Ethical implications
The ethical issues of not disclosing a policy often relate to patient autonomy. Autonomy is variously defined but broadly means self determination and freedom from coercion.1 Respect for patient autonomy can mean upholding patients' opportunities and abilities to act in accordance with their own values; their responsibilities to themselves, their families, and their communities; and their interests as they define them.7 Patient autonomy is supported by principles or general guides to action.7 8 Those principles are expressed through rules about what ought to be done in specific situations—that is, in institutional and clinical policies. The principles include information, access, equity, shared decision making, choice, safety, support, representation, redress, and respect.7 8 Not informing patients about policies can undermine some of those principles. The following example illustrates this.
, 百拇医药
The National Blood Service published a leaflet about blood transfusion, current in 2002.9 It discussed allogeneic or donor transfusion in detail and mentioned autologous transfusion, the collection of some of the patient's own blood beforehand for use in elective surgery.9 Some hospitals did not provide routine autologous transfusion and had a policy of not giving the national leaflet to patients. Autologous blood is safer than allogeneic blood because it cannot transmit viruses like HIV or prions like new variant CJD or cause immunological reactions.10 11 Most haematologists would prefer autologous transfusion for themselves.12 As transfusion is a treatment with risks that patients might think important, they must consent to its possible use before elective surgery.2 But if patients are not offered information about alternatives to allogeneic transfusion, shared decision making is vitiated. The doctor knows something relevant—the clinical policy—that the patient does not know.
, http://www.100md.com
This bears on respect because withholding information from patients that they arguably ought or need to have denies them equality. Here, it also negated choice because patients could not choose between accepting the risks of allogeneic transfusion, discussing with their doctor other ways of saving or conserving blood, changing to another hospital, or forgoing the elective surgery. Moreover, patients' safety was threatened, and not just by the lack of a routine service.
, 百拇医药
Some hospitals provided autologous transfusion on request.13 But before patients could ask for it, they had to know that it was a usual procedure. Equity is undermined if a hospital does not offer all patients relevant information because educated, energetic patients are more likely to find out things out independently than disadvantaged patients. Access comes in indirectly. A patient who asks for and is granted something not routinely provided can set a precedent as well as benefiting personally. But even if a request is refused it can alert staff to consider that demand for the future. That can lead to a change in policy or service, so benefiting future patients. Asking for something is one of the few ways individual patients can influence local services or take responsibility for the quality of health care.
, 百拇医药
Withheld policies
Thus what seems like a simple decision by doctors or managers not to tell patients about a policy can have important ramifications. Withholding some policies prevents patients from knowing what will happen; withholding others prevents them from knowing what will not happen. Some of the withheld policies relate to local idiosyncracies, but others cover widespread practices that are so secret, scarcely any patient or patient representative would know about them. Examples of these that have come to light include the retention of children's organs after postmortem examination, vaginal or rectal examination of anaesthetised patients, and do not resuscitate orders.14-16
, http://www.100md.com
Other national policies were (or are) less secret but are nevertheless unsuspected by many patients. These include national guidelines for general practitioners that restrict patients' access to specialist diagnosis until their symptoms match those for established cancers17 and guidelines that restrict access of some categories of patients to potentially beneficial drugs like statins.18 Examples of information withheld by some hospitals but not by others include protocols for treatment that give the evidence for and against professionally disputed practices, such as the length of preoperative fasting,19 and the national leaflets that describe and evaluate women's choices in childbirth.20
, http://www.100md.com
The ethical and moral consequences of withholding information on such policies are serious. It hinders patients from playing an autonomous part in their own care; from taking actions that could benefit other patients; and from direct altruism, like donating their child's organs for research or teaching.14 It also hinders patients from understanding the strengths and limitations of the health service. Withholding denies moral agency to patients, irrespective of the personal or institutional motives. Doctors may withhold policies with good intentions. But though we judge ourselves by our intentions, other people judge us by the effects of our actions on them.21
, 百拇医药
Political implications
Withholding information on policies affects patients both individually and as interest holders in the political arenas of policy making at every level of health care. Individually, the effects relate again to autonomy. Not telling patients about policies that might affect them can deny them self determination. If they are unaware of what might happen to them, they are denied even the power of refusal. That is coercion. The control of people is part of all social and institutional life.22 But control through coercion is usually regulated by the law and subject to legal challenge. Hidden coercion is not subject to such safeguards.
, 百拇医药
Summary points
Healthcare policies may be withheld from patients for clinical or resource reasons
Withholding policies from patients can undermine many aspects of their autonomy
Withholding policies from patients can also repress their political voice
Doctors who offer patients access to policies act ethically
Withholding can also disadvantage patients collectively. Patients and patient representatives must be knowledgeable when they speak for patients' interests in policy making groups or arenas.5 But patients speaking from their own experiences may be unaware of policies that were withheld from them. Patient representatives, who study patients' experiences and views, may also be unaware. If they do not know about withheld policies, they cannot identify and speak about the possible harms that might result from them. In political language, patients' interests are repressed because they have no voice to speak for them.8 23 Hidden power can exert extensive control through its indirect consequences.24
, 百拇医药
Withheld policies can and do become disclosed, however. Patients or patient representatives may discover withheld policies through chance or through reading professional journals. Or individual doctors may tell them in clinical or working relationships, perhaps as a result of doubts about withholding the information. When patients discover a withheld policy by chance, it may cause distrust of doctors.
What can doctors do
Doctors can do several things in clinical relationships to support patients' autonomy. These include:
, 百拇医药
Offering patients easy access to the institutional and clinical policies and guidelines that might affect them
Deciding how to make available to patients any policies that are unwritten
Discussing with patient representatives and groups of patients how best to offer information about policies that might distress or worry patients
Reviewing the justification for withholding policies that they would seek to circumvent if they or their families were affected by them
, 百拇医药
It can be difficult to distinguish between policies that are withheld because of doctors' personal or clinical views and those withheld because of shortages of resources or covert rationing. Most healthcare systems, however financed, attempt some sort of rationing and use doctors to carry it out.1 Some doctors feel that telling patients about policies for rationing would be doing the state's dirty work. But the opposite is true. To conceal policies that dictate rationing is to collude in the state's silence.
, 百拇医药
Most doctors wish to practise medicine ethically. Ensuring that patients have access to policies that might affect them is an important aspect of ethical practice.
I thank Elisabeth Hartley and Andrew Smith for their helpful comments.
Contributors and sources: CW is a patient representative. She is particularly concerned with elucidating the ways in which patients' individual and collective interests are repressed. This article arose from many discussions about patient information between doctors and patient representatives in three royal medical colleges between 1995 and 2003. CW has been awarded the Humphry Davey Medal of the Royal College of Anaesthetists and the College Medal of the Royal College of Pathologists.
, 百拇医药
Competing interests: None declared.
References
Jensen UJ, Mooney G. Changing values: autonomy and paternalism in medicine and health care. In: Jensen UJ, Mooney G, eds. Changing values in medicine and health care decision making. Chichester: John Wiley, 1990: 1-15.
General Medical Council. Seeking patients' consent: the ethical considerations. London: GMC, 1998.
, 百拇医药
Eddy DM. Practice policies—what are they JAMA 1990;263: 877-80.
Charlwood A. "It's hospital policy..." AIMS Journal 2004;16: 5.
Williamson C. The rise of doctor-patient working groups. BMJ 1998;317: 1374-7.
Parroy S, Thoms G, Williamson C. The practicalities of developing patient information. In: Lack JA, Rollin A-M, Thoms G, White L, Williamson C, eds. Raising the standard: information for patients. London: Royal College of Anaesthetists, 2003: 15-23.
, 百拇医药
Williamson C. The patient perspective on information. In: Lack JA, Rollin A-M, Thoms G, White L, Williamson C, eds. Raising the standard: information for patients. London: Royal College of Anaesthetists, 2003: 73-6.
Williamson C. Whose standards Consumer and professional standards in health care. Buckingham: Open University Press, 1992.
National Blood Service. Receiving a blood transfusion. London: NBS, 2002.
, 百拇医药
Kay LA. The need for autologous blood transfusion. BMJ 1987;294: 137-8.
Holland PV. Viral infections and the blood supply. N Engl J Med 1999;340: 1734-5.
Chapman C. Pre-operative autologous donations—the NBS experience. Bull R Coll Pathol 1999;105: xiv.
Stubbs S. Autologous donation—a patient's story. Blood Matters 2001;8: 4-5.
Royal Liverpool Children's Inquiry. The Royal Liverpool Children's inquiry report. London: Stationery Office, 2001.
, http://www.100md.com
Coldicott Y, Pope C, Roberts C. The ethics of intimate examinations: teaching tomorrow's doctors. BMJ 2003;326: 97-101.
Doyal L, Wilsher D. Withholding cardiopulmonary resuscitation: proposals for formal guidelines. BMJ 1993:306: 1593-6.
Summerton N. Cancer recognition and primary care. Br J Gen Pract 2002;52: 5-6.
Raithatha N, Smith RD. Paying for statins. BMJ 2004;328: 400-2.
, 百拇医药
Markham R, Smith A. Limits to patient choice: example from anaesthesia. BMJ 2003;326: 863-4.
Stapleton H, Kirkham M. Thomas G. Qualitative study of evidence based leaflets in maternity care. BMJ 2002;324: 639-43.
Rhodes P. Father knows best. AIMS Q J 1982 Spring: 1-3.
Sites P. Control: the basis of social order. New York: Dunellen, 1973.
Alford RR. Health care politics: ideological and interest group barriers to reform. Chicago: University of Chicago Press, 1975.
Lukes S. Power: a radical view. London: Macmillian, 1974., http://www.100md.com(Charlotte Williamson, mem)
Keeping clinical information about themselves from patients is now considered unacceptable, but transparency about clinical and institutional policies that may affect care is less universal
Introduction
Patient autonomy is regarded as a basic value for modern health care in Western countries.1 The UK regulatory body, the General Medical Council, states that patients must be given enough information to enable them to give informed consent to treatment.2 It does not, however, state whether patients must be told about all the procedures or treatments that might help them or only those provided locally.2 Yet policies about what information to offer or to withhold are crucial to patients' autonomy. In this article I show the harm that can be caused by withholding information about policies from patients and discuss some of the ethical and political issues.
, 百拇医药
Importance of policies
Policies set the context, the opportunities and limits, within which clinical care is provided. They shape health professionals' behaviour, sometimes for decades.3 They may be written down as statements of instruction or as guidelines. Or they may be what every member of a clinical service knows informally. Policies are so taken for granted by many health professionals that if patients question some aspect of care, they may simply be told, "It's hospital policy" as a barrier to further questions, discussion, or negotiation.4 Policies are part of the situation in which patients find themselves, whether in hospital or in their general practitioner's surgery. So arguably, patients who might be affected by specific policies should be told about them.
, 百拇医药
Patients need policy information to make informed decisions about their treatment
Credit: BSIP, RAGUET H./SPL
This does not always happen because information for patients is contentious. Doctors and patient representatives (patients speaking for the interests of other patients5) often hold passionately opposed views about what should be included or excluded.6 Each may see implications in the withholding of policies that the other does not see or thinks unimportant.
, 百拇医药
Ethical implications
The ethical issues of not disclosing a policy often relate to patient autonomy. Autonomy is variously defined but broadly means self determination and freedom from coercion.1 Respect for patient autonomy can mean upholding patients' opportunities and abilities to act in accordance with their own values; their responsibilities to themselves, their families, and their communities; and their interests as they define them.7 Patient autonomy is supported by principles or general guides to action.7 8 Those principles are expressed through rules about what ought to be done in specific situations—that is, in institutional and clinical policies. The principles include information, access, equity, shared decision making, choice, safety, support, representation, redress, and respect.7 8 Not informing patients about policies can undermine some of those principles. The following example illustrates this.
, 百拇医药
The National Blood Service published a leaflet about blood transfusion, current in 2002.9 It discussed allogeneic or donor transfusion in detail and mentioned autologous transfusion, the collection of some of the patient's own blood beforehand for use in elective surgery.9 Some hospitals did not provide routine autologous transfusion and had a policy of not giving the national leaflet to patients. Autologous blood is safer than allogeneic blood because it cannot transmit viruses like HIV or prions like new variant CJD or cause immunological reactions.10 11 Most haematologists would prefer autologous transfusion for themselves.12 As transfusion is a treatment with risks that patients might think important, they must consent to its possible use before elective surgery.2 But if patients are not offered information about alternatives to allogeneic transfusion, shared decision making is vitiated. The doctor knows something relevant—the clinical policy—that the patient does not know.
, http://www.100md.com
This bears on respect because withholding information from patients that they arguably ought or need to have denies them equality. Here, it also negated choice because patients could not choose between accepting the risks of allogeneic transfusion, discussing with their doctor other ways of saving or conserving blood, changing to another hospital, or forgoing the elective surgery. Moreover, patients' safety was threatened, and not just by the lack of a routine service.
, 百拇医药
Some hospitals provided autologous transfusion on request.13 But before patients could ask for it, they had to know that it was a usual procedure. Equity is undermined if a hospital does not offer all patients relevant information because educated, energetic patients are more likely to find out things out independently than disadvantaged patients. Access comes in indirectly. A patient who asks for and is granted something not routinely provided can set a precedent as well as benefiting personally. But even if a request is refused it can alert staff to consider that demand for the future. That can lead to a change in policy or service, so benefiting future patients. Asking for something is one of the few ways individual patients can influence local services or take responsibility for the quality of health care.
, 百拇医药
Withheld policies
Thus what seems like a simple decision by doctors or managers not to tell patients about a policy can have important ramifications. Withholding some policies prevents patients from knowing what will happen; withholding others prevents them from knowing what will not happen. Some of the withheld policies relate to local idiosyncracies, but others cover widespread practices that are so secret, scarcely any patient or patient representative would know about them. Examples of these that have come to light include the retention of children's organs after postmortem examination, vaginal or rectal examination of anaesthetised patients, and do not resuscitate orders.14-16
, http://www.100md.com
Other national policies were (or are) less secret but are nevertheless unsuspected by many patients. These include national guidelines for general practitioners that restrict patients' access to specialist diagnosis until their symptoms match those for established cancers17 and guidelines that restrict access of some categories of patients to potentially beneficial drugs like statins.18 Examples of information withheld by some hospitals but not by others include protocols for treatment that give the evidence for and against professionally disputed practices, such as the length of preoperative fasting,19 and the national leaflets that describe and evaluate women's choices in childbirth.20
, http://www.100md.com
The ethical and moral consequences of withholding information on such policies are serious. It hinders patients from playing an autonomous part in their own care; from taking actions that could benefit other patients; and from direct altruism, like donating their child's organs for research or teaching.14 It also hinders patients from understanding the strengths and limitations of the health service. Withholding denies moral agency to patients, irrespective of the personal or institutional motives. Doctors may withhold policies with good intentions. But though we judge ourselves by our intentions, other people judge us by the effects of our actions on them.21
, 百拇医药
Political implications
Withholding information on policies affects patients both individually and as interest holders in the political arenas of policy making at every level of health care. Individually, the effects relate again to autonomy. Not telling patients about policies that might affect them can deny them self determination. If they are unaware of what might happen to them, they are denied even the power of refusal. That is coercion. The control of people is part of all social and institutional life.22 But control through coercion is usually regulated by the law and subject to legal challenge. Hidden coercion is not subject to such safeguards.
, 百拇医药
Summary points
Healthcare policies may be withheld from patients for clinical or resource reasons
Withholding policies from patients can undermine many aspects of their autonomy
Withholding policies from patients can also repress their political voice
Doctors who offer patients access to policies act ethically
Withholding can also disadvantage patients collectively. Patients and patient representatives must be knowledgeable when they speak for patients' interests in policy making groups or arenas.5 But patients speaking from their own experiences may be unaware of policies that were withheld from them. Patient representatives, who study patients' experiences and views, may also be unaware. If they do not know about withheld policies, they cannot identify and speak about the possible harms that might result from them. In political language, patients' interests are repressed because they have no voice to speak for them.8 23 Hidden power can exert extensive control through its indirect consequences.24
, 百拇医药
Withheld policies can and do become disclosed, however. Patients or patient representatives may discover withheld policies through chance or through reading professional journals. Or individual doctors may tell them in clinical or working relationships, perhaps as a result of doubts about withholding the information. When patients discover a withheld policy by chance, it may cause distrust of doctors.
What can doctors do
Doctors can do several things in clinical relationships to support patients' autonomy. These include:
, 百拇医药
Offering patients easy access to the institutional and clinical policies and guidelines that might affect them
Deciding how to make available to patients any policies that are unwritten
Discussing with patient representatives and groups of patients how best to offer information about policies that might distress or worry patients
Reviewing the justification for withholding policies that they would seek to circumvent if they or their families were affected by them
, 百拇医药
It can be difficult to distinguish between policies that are withheld because of doctors' personal or clinical views and those withheld because of shortages of resources or covert rationing. Most healthcare systems, however financed, attempt some sort of rationing and use doctors to carry it out.1 Some doctors feel that telling patients about policies for rationing would be doing the state's dirty work. But the opposite is true. To conceal policies that dictate rationing is to collude in the state's silence.
, 百拇医药
Most doctors wish to practise medicine ethically. Ensuring that patients have access to policies that might affect them is an important aspect of ethical practice.
I thank Elisabeth Hartley and Andrew Smith for their helpful comments.
Contributors and sources: CW is a patient representative. She is particularly concerned with elucidating the ways in which patients' individual and collective interests are repressed. This article arose from many discussions about patient information between doctors and patient representatives in three royal medical colleges between 1995 and 2003. CW has been awarded the Humphry Davey Medal of the Royal College of Anaesthetists and the College Medal of the Royal College of Pathologists.
, 百拇医药
Competing interests: None declared.
References
Jensen UJ, Mooney G. Changing values: autonomy and paternalism in medicine and health care. In: Jensen UJ, Mooney G, eds. Changing values in medicine and health care decision making. Chichester: John Wiley, 1990: 1-15.
General Medical Council. Seeking patients' consent: the ethical considerations. London: GMC, 1998.
, 百拇医药
Eddy DM. Practice policies—what are they JAMA 1990;263: 877-80.
Charlwood A. "It's hospital policy..." AIMS Journal 2004;16: 5.
Williamson C. The rise of doctor-patient working groups. BMJ 1998;317: 1374-7.
Parroy S, Thoms G, Williamson C. The practicalities of developing patient information. In: Lack JA, Rollin A-M, Thoms G, White L, Williamson C, eds. Raising the standard: information for patients. London: Royal College of Anaesthetists, 2003: 15-23.
, 百拇医药
Williamson C. The patient perspective on information. In: Lack JA, Rollin A-M, Thoms G, White L, Williamson C, eds. Raising the standard: information for patients. London: Royal College of Anaesthetists, 2003: 73-6.
Williamson C. Whose standards Consumer and professional standards in health care. Buckingham: Open University Press, 1992.
National Blood Service. Receiving a blood transfusion. London: NBS, 2002.
, 百拇医药
Kay LA. The need for autologous blood transfusion. BMJ 1987;294: 137-8.
Holland PV. Viral infections and the blood supply. N Engl J Med 1999;340: 1734-5.
Chapman C. Pre-operative autologous donations—the NBS experience. Bull R Coll Pathol 1999;105: xiv.
Stubbs S. Autologous donation—a patient's story. Blood Matters 2001;8: 4-5.
Royal Liverpool Children's Inquiry. The Royal Liverpool Children's inquiry report. London: Stationery Office, 2001.
, http://www.100md.com
Coldicott Y, Pope C, Roberts C. The ethics of intimate examinations: teaching tomorrow's doctors. BMJ 2003;326: 97-101.
Doyal L, Wilsher D. Withholding cardiopulmonary resuscitation: proposals for formal guidelines. BMJ 1993:306: 1593-6.
Summerton N. Cancer recognition and primary care. Br J Gen Pract 2002;52: 5-6.
Raithatha N, Smith RD. Paying for statins. BMJ 2004;328: 400-2.
, 百拇医药
Markham R, Smith A. Limits to patient choice: example from anaesthesia. BMJ 2003;326: 863-4.
Stapleton H, Kirkham M. Thomas G. Qualitative study of evidence based leaflets in maternity care. BMJ 2002;324: 639-43.
Rhodes P. Father knows best. AIMS Q J 1982 Spring: 1-3.
Sites P. Control: the basis of social order. New York: Dunellen, 1973.
Alford RR. Health care politics: ideological and interest group barriers to reform. Chicago: University of Chicago Press, 1975.
Lukes S. Power: a radical view. London: Macmillian, 1974., http://www.100md.com(Charlotte Williamson, mem)