• health policy;
  • patient participation


  1. Top of page
  2. Abstract
  3. Supporting and resourcing treatment decision-making: some policy considerations
  4. Conclusions
  5. Acknowledgements
  6. References

This paper considers some of the policy implications of issues raised during a conference about treatment decision-making in the clinical encounter held in Hamilton, Ontario in May 1999. Policies promoting patient participation in treatment decision-making need to be flexible enough to ensure that they are appropriate across the range of contexts in which health care decisions are made and acceptable to people with diverse preferences and abilities. They should also be formulated in consideration of other health policies and of available resources. Policies of informing people and involving them in decisions about their care are unlikely to be simple to implement. Various strategies might be needed to support them. These include the development of appropriate skills among health professionals and in the general population, the use of interventions to encourage people to play more active roles in decisions about their health care, the provision of decision aids for people facing specific decisions and the provision and accreditation of more general information resources and services. If information and other facilitators of patient participation in decision-making are seen as integral to good quality health care, then funding should be made available for them. This will, however, have opportunity costs. Policy makers’ decisions about how much health care funding should be invested in which strategies should be underpinned by good research evidence about the effects that different types of intervention have on a range of outcomes for individuals, health care systems and populations. The knowledge on which current policies are based is limited. The development of future policies will be enhanced if policy makers invest in critical conceptual thinking, reflective practice, imaginative development work and good quality evaluative research.

Supporting and resourcing treatment decision-making: some policy considerations

  1. Top of page
  2. Abstract
  3. Supporting and resourcing treatment decision-making: some policy considerations
  4. Conclusions
  5. Acknowledgements
  6. References

The 1999 CHEPA conference on treatment decision-making in the clinical encounter explored the patterns of interaction that may occur between individual patients and health professionals during treatment decision-making. It considered patients’ and health care professionals’ attitudes towards, and experiences of, particular approaches to decision-making. Since most of the research on approaches to treatment decision-making has focused primarily on the clinical encounter and the individuals who participate in it, it was not surprising that relatively little was said about the broader implications of promoting particular approaches to decision-making about individual health care.

There is a growing consensus that there are strong ethical reasons for arguing that people should be informed about, and able to influence, decisions about their own health care. Governments and professional associations in many countries in the ‘developed’ westernized world have stressed the importance of informing people about their health care options and involving them in decisions about their own health care. They have acted in the context of little being known about the practicalities of implementing treatment approaches that incorporate these features, or indeed about the broader impacts that they may have.

In this paper I consider the formulation of policies that promote the informed and active participation of individuals in decisions about their own health care, what may be needed to implement them, and how they relate in practice to other health policies, particularly those which might tend to constrain the choices available within clinical encounters. The paper is based on a presentation summarizing some of the policy implications of issues raised at the CHEPA conference.

Approaches to decision-making: thinking in terms of models

A range of philosophies and models have been developed which describe patterns of professional – patient interaction during consultations and decision-making. For example, distinctions have been made between paternalistic, informative or consumerist, interpretive and deliberative models of physician – patient interaction;1 between narrowly biomedical, expanded biomedical, biopsychosocial, psychosocial and consumerist patterns of communication in consultations;2 between patients who prefer or play passive, collaborative or active roles in treatment decisions;3 and between paternalistic, shared, informed and in-between models of decision-making.4, 5

While some of the people who have developed conceptual models of decision-making have stressed that these are meant to be descriptive, others have adopted normative positions and very strongly support one model – usually one in which the patient plays either a collaborative or an autonomous role. These people may seek to put pressure on professional associations, health care provider organizations or governments to promote a particular approach to treatment decision-making.

Policy makers should be extremely wary of advocating any one model of treatment decision-making as ideal, for several reasons. Firstly, treatment decisions vary considerably in terms of the contexts in which they must be made and the nature of the options available. For example, decisions may be more or less familiar to the decision-makers and more or less urgent in time scale. They vary in the seriousness and levels of certainty of their possible outcomes.6 No single approach to treatment decision-making will best suit all.

Secondly, individual patients and clinicians vary in their preferences for different approaches7, 8 and their ability to adopt particular roles in decision-making. Imposing an approach with which either or both parties in the clinical encounter are uncomfortable may be inconsistent with the notions of respect for individual choice that many of the approaches aim to support. It may also have undesirable effects.

Thirdly, while models and role labels can be useful for concise communication about different approaches to decision-making, many of them fail to accommodate the complexity of decision-making processes. They tend to ignore the fact that there are several analytic stages to decision-making,5, 9 and to assume that all treatment decisions are discrete entities made within single consultations involving one doctor and one patient.

Anyone who is formulating a policy relating to informing patients and involving them in decisions about their care should consider their words carefully. The various terms that can be used to describe professional–patient interactions and different approaches to treatment decision-making have been inconsistently used and may mean and imply different things to different people.

Putting clinical decision-making in context

When considering treatment decision-making, it is often convenient to imagine discrete (major) decisions being made by one doctor and one patient within a single consultation. In practice, however, many treatment decisions are difficult to isolate. They may be considered and revisited over extended time periods. They may have several component parts. For example a decision to have a hysterectomy also requires decisions about how the hysterectomy will be done (abdominally, vaginally, laparoscopically) and which organs will be removed.

The processes of treatment decision-making are not always contained within formal consultations. People consider and make decisions about their health care between, as well as within, visits with health professionals. For example, people with chronic illnesses can become very knowledgeable about their condition and about how particular treatments affect them. They may make many decisions about when and how to use both prescribed and over-the-counter medications during the course of their daily lives.10 Health professionals may encourage people facing major decisions for example, about surgery to think about their options (or about whether to accept a particular recommendation) and come back to a future consultation to discuss or convey a decision. This means that people may have decision-related information needs between consultations (see below).

There are often multiple ‘players’ in treatment decision-making. People may see several different health professionals in relation to a particular (or multiple) health problem(s), and family members are often affected by and influential in decision-making. As soon as more than two people are involved in a decision-making process, a wider range of patterns of interaction becomes possible. For example, different combinations of people may meet on different occasions and alliances may be formed, such as between a patient and family member, or a doctor and family member.11

More remote players such as policy-makers in government and health care funding organizations, pharmaceutical companies and health care providers may also influence the decision-making that takes place within clinical encounters, not least by constraining the choices that are available.

Strategies and interventions to support treatment decision-making

In many situations, substantial cultural and behavioural changes will be needed in order to implement approaches to treatment decision-making which allow patients to influence the process. A range of strategies, not all of which are delivered and contained within clinical encounters, may be needed to promote the changes. Four basic types of strategy are listed in Box 1.

Table 1. Box 1  Strategies for supporting (patient participation in) treatment decision-making Thumbnail image of
Development of health professionals’ skills

Responsibility for implementing appropriate approaches to treatment decision-making and supporting patients’ involvement in decisions about their own care is often placed with health professionals. This implies that health professionals need a variety of skills and resources beyond those necessary to make diagnoses and execute treatment interventions.

Health professionals are only likely to facilitate a patient’s involvement in decision-making if they recognize a decision as such. They must accept that there is a choice to be made, rather than assuming that there is only one course of action in a given situation. The distinction between clinical-deciding and clinical-doing needs careful consideration and has implications for policy and for professional training. Policy makers might usefully pay attention to clinical situations in which health professionals routinely DO something which might be sensitive to patients preferences. Training could help sensitize health professionals to the vast number of decisions they make and highlight some of those that they may have been making routinely, but about which patients’ preferences vary.

Opinions vary about which decisions should be deliberated with some kind of input of patients’ views and which should be made by doctors as part of the execution of a recognized decision. These opinions will probably evolve over time. Consider, for example, a woman with heavy periods who decides (with her gynaecologist) that she wants a hysterectomy. Should the woman be involved in the related decisions mentioned above, (e.g. how the hysterectomy will be performed and which organs will be removed), or are those matters for the gynaecologist to decide? As the popular media raise awareness of the advantages and disadvantages of different surgical approaches and the effects of removing or retaining particular organs, the balance of opinion is likely to shift more towards the greater involvement of the woman in these decisions. There are other questions to be asked in relation to this scenario. For example, should the woman be involved in decisions about which anaesthetics and suture materials will be used or will they be determined by the anaesthetist, theatre staff, hospital policy or the contents of the theatre stock room?

The question of which decisions require patients’ input raises further questions about which decisions people want to participate in, which are likely to be sensitive to individual preferences, which options any given health care system can afford to offer, and how many decisions people can cope with. The answers are likely to vary across health care systems and cultures.

For whichever decisions patients are to be involved in, health professionals need to be able to identify and meet their needs for information. If someone is to understand and participate in decisions about their care, then most people would agree that at a minimum they need to know: what is wrong with them; what the relevant treatment options are for their condition; what benefits and harms might result from each of these options (and from the option of doing nothing); and how likely those benefits and harms are likely to occur. However, individual preferences for levels of detail in information vary, suggesting that health professionals also need skills to be able to identify and satisfy individual preferences.

Provision of decision support for specific decisions

It is difficult for health professionals to keep all the relevant information for all treatment decisions in their heads. They cannot realistically be expected to be able to remember and communicate unprompted all the relevant information that each person they see might need. Also, many people find it difficult to remember verbally delivered information well and for long enough to make a decision. Thus, printed or audiovisual information materials seem like a good idea.

A range of decision aids were displayed during the CHEPA conference. They presented information about treatment options in different media formats, including interactive videodisk programs, audio-guided booklets with accompanying personal worksheets, decision boards and videos with accompanying booklets. Like most decision aids, they had been developed to help people make fairly big decisions about their health care. They aimed to help people consider, for example, whether or not to have hormone replacement therapy, whether or not to accept prenatal testing and which type(s) of treatment to select for particular types and stages of breast, lung and prostate cancer.

It is striking that so many of the groups developing decision aids have focused on the same relatively small number of treatment choices. The treatment decisions supported by decision aids seem to involve several clear-cut options, each of which are basically accepted as relevant by most doctors, and for which there is a fair amount of research evidence about effects. Decision aids may be most useful for value-sensitive decisions which involve treatment options with different, uncertain outcomes. Their use has also been advocated for decisions in which there are wide variations in professional practice.12

Interventions to promote patient participation more generally

In addition to supporting specific decisions, interventions have been developed to promote patients’ active participation in consultations and treatment decisions more generally. For example, the Consumers’ Association of Canada and the Alberta Medical Association collaborated to develop a booklet for patients with tips to help them improve communication during office visits with clinicians; a wallet-sized card to remind people of things to think about before they visit the doctor and with space to note down any questions, concerns or things they want to discuss; and a tear-off pad on which doctors or patients could fill in key points about the patient’s health status and treatment at the end of a consultation. Others have encouraged people to ask questions,13 or to maintain diaries of their symptoms to give themselves and their health care providers a clearer picture of their problems and of the apparent effects of any treatments.14

Interventions to increase awareness and skills in the general population

The notion of being able to contribute to major decisions about their health care is still novel to some people. Although interventions that aim to encourage and support patients’ involvement in specific treatment decisions seem promising, it seems odd that people may be first encouraged to participate in decisions about their care at times when they are seriously ill and perhaps emotionally distressed. Policy makers in health and education could consider the potential benefits of making sure that people are aware before they get sick of the general issues associated with treatment decision-making and the potential advantages of participating in decision-making about their own care. It would also help if people were equipped with the types of information processing and decision-making skills that they are increasingly expected to use when they fall ill.

Enhancing access to information outside of consultations

Information needs are unlikely to be fully met within consultations and formal health care episodes. Some health professionals still underestimate patients’ information needs. Others may forget to provide key elements of information, may not have time to do so, or may think that they do not need to tell a patient something because someone else will have done it. Patients may not be able to understand, take in or remember everything they are told. They may be reluctant to seek clarification of information given or to ask additional questions, and indeed often do not think of questions until they have left the consultation.

For these reasons, and because many decisions are thought about or made by patients between consultations, access to good quality information, advice and counselling services is likely to be important. People should be able to find the information they need at the time that they need it.

Various information services and sources can help meet information needs outside consultations. The internet has enormous potential as a source of health-related information but it also presents many challenges. The quality of much of the available information is poor and patterns of access are currently extremely inequitable.15 Telephone helplines and drop-in services can also be helpful, although again there may be concerns about the quality of the information they provide, particularly about health care options and their effectiveness.16

An increasing number of organizations with vested commercial interests are developing and supporting the distribution of information about particular types of treatment, which again raises concerns about the quality of information that people are accessing. Governments might want to consider the extent to which their policies can encourage and support independent information producers. They might also want to consider the possibility of independent accreditation of good quality information resources and investment in the health and science literacy of the general population so that information is more likely to be used critically.

Considering resources for treatment decision-making

Strategies to ensure that people can access good quality information and other forms of support for decision-making will require resources if they are to be well implemented. There are costs associated with developing, providing, using and dealing with the consequences of using interventions to support different forms of patient participation in treatment decision-making.

Policy-makers and managers at various levels have to decide how much health care funding should be invested into which decision-support strategies and interventions. There is some concern that, particularly in publicly funded health care systems, funding has not followed in support of policy rhetoric about the importance of informing people and enabling them to participate in decisions about their care. If information and other facilitators of such participation are seen as an integral part of good quality health care, then funding should be available for them. However, the opportunity costs of such investments must be taken into account and policy-makers will need to consider how best to deal with and present them. For example, in a resource limited health service, additional funding for interventions to promote patients’ participation in treatment decision-making could be top-sliced from across a range of health care budgets, or it could be made available by selectively reducing a few specific budgets.

Evaluating interventions

It is increasingly accepted that decisions about investment in health care technologies should be based on consideration, among other things, of research evidence about their effectiveness. There is a strong case for arguing that decisions concerning investment in particular strategies, or interventions aiming to provide information and support patient participation in treatment decision-making, should also be underpinned by research evidence about their effectiveness.

Evaluations are, however, as the name suggests, value-laden, even when they take the form of rigorous randomized controlled trials. Researchers make decisions about the type of control against which an intervention will be compared, and about the types of criteria that will be used to judge their effectiveness (the processes and outcomes that will be assessed, the ways in which they will be measured and the time period over which they will be measured).

Strategies and interventions to support decision-making might impact on a range of processes and outcomes, including: knowledge and understanding; who contributes in what way to decision-making; what factors influence the choice made; the lengths of (and hence the costs and number of other available) consultations; the quality of the decision made; professional-patient relationships (in both the short and longer term); the delivery of health care; health-related behaviours; the outcomes of health care; people’s general sense of wellbeing; and the expectations and satisfaction of patients, their families and health professionals with various aspects of health care and its outcomes.12, 17 People will have different opinions about which of these criteria are most important and how they value particular effects.

Different outcomes may be more or less important to policy-makers operating in different contexts. For example, if professional associations focus on their members’ relationships with individual patients in specific clinical encounters, they are likely to place a high value on individuals’ perceptions of the processes and outcomes of the care that they themselves deliver and receive. Policy-makers focusing on the health care system or the health of a nation as a whole, however, may place greater emphasis on the costs and broader system impacts. An intervention may perform very well against some criteria, yet poorly against others.

Research evidence about the effectiveness of (interventions to promote) particular approaches to treatment decision-making in particular circumstances is currently limited. A recent systematic review of the effects of decision support interventions for people facing treatment decisions suggests that we can be fairly confident that evidence-based decision aids can increase people’s knowledge and understanding about their condition and their active participation in decision-making. Their impact on choices made is variable and may depend in part on the baseline levels of use of the different options.18 Many other aspects of their effects, including their impact on health care costs and outcomes, require further research. The extent to which particular aids are effective, appropriate and acceptable for people from different social and cultural groups, also needs to be investigated.

Research is also needed to improve our ability to assess various aspects of the quality of particular interventions and to investigate the relative merits of different approaches to their development. The development of decision aids can be skill-and resource-intensive. Developers must grapple with issues relating to identifying the information to provide, how to present it and how to facilitate the decision-making process, for example by structuring decisions and providing values clarification exercises.19 Development must therefore be underpinned by research to investigate, for example, the information priorities of patient populations and the ways in which people understand and use statistical information when it is presented in different ways.

In addition to allocating funds to the development and provision of interventions to support patient participation in decision-making, policy makers might want to consider setting quality standards and regulating the processes that are used to develop them. However, the current knowledge base may limit confidence in the validity of any standards that are developed.

Related policies

Policies relating to patients’ participation in treatment decision-making need to be considered, formulated and implemented in conjunction with other health care policies and in awareness of resource availability.

Policies that involve the promotion of clinical effectiveness and cost effectiveness, for example by the use of clinical guidelines and care pathways, may tend to constrain the choices that are available to individuals. There are potential tensions between these policies and those that tend to stress the importance of allowing individual patients to choose for themselves (or at least have a significant influence on) what treatments they will have.

The potential tensions between policies promoting patients’ involvement in decision-making and other health policies have not been fully explored, although concern has been expressed.20[21]–22 Policy-makers need to ensure that they make the issues clear. Health care professionals may be picking up mixed messages because the different policies appear to have been formulated and promoted independently of each other. Unthinking promotion of patients’‘rights’ to participation and choice may tend to generate expectations that make constraints on choice less acceptable.


  1. Top of page
  2. Abstract
  3. Supporting and resourcing treatment decision-making: some policy considerations
  4. Conclusions
  5. Acknowledgements
  6. References

Current policies about informing and involving patients are based on limited knowledge. There is still a lot to be learned about the appropriateness of different approaches to treatment decision-making in particular contexts and of the effects of the various interventions that aim to promote and support patients’ participation in decisions about their own health care. Policies should be adapted as our understanding progresses (see Box 2).

Table 2. Box 2  Some key messages for policy makers Thumbnail image of

Good policy-making at national, health care provider, professional association or interest group level, should be underpinned by rigorous research, critical thinking and open debate about the advantages, disadvantages and opportunity costs of different approaches to supporting clinical decision-making in a variety of situations. The future development of policy will be enhanced if policy-makers invest in further conceptual development, reflective practice, considered development of pilot interventions and imaginative good quality evaluative research.


  1. Top of page
  2. Abstract
  3. Supporting and resourcing treatment decision-making: some policy considerations
  4. Conclusions
  5. Acknowledgements
  6. References

Vikki Entwistle is partly funded by a special research fellowship from the Leverhulme Trust. The Health Services Research Unit receives core funding from the Chief Scientist Office of the Scottish Executive Health Department. The views expressed in this paper are those of the author and not necessarily those of the Department.

I am very grateful to the organizers of the CHEPA conference for inviting me to attend and for meeting the costs of my attendance. I would also like to thank Cathy Charles for helpful comments on an earlier draft of this paper.


  1. Top of page
  2. Abstract
  3. Supporting and resourcing treatment decision-making: some policy considerations
  4. Conclusions
  5. Acknowledgements
  6. References
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