Self-management, compliance and concordance

Telecare has many potential advantages, but may also evoke ethical questions that have been scantily addressed in the medial ethics literature up till now. Issues of consent, privacy and equal access are important, as well as considerations regarding medicalisation of lifestyle and the home environment, the consequences for family members and the impact on the care relationship.6 7 In the following, I will focus only on the consequences of telecare for patients’ autonomy and their responsibilities with regard to self-management and compliance.

One of the stated goals of telemonitoring systems is enhancing independence and the self-care of patients. As one producer’s website states: “patients are empowered to become more active participants in managing their own disease”. Apart from decreasing the dependence on the physical presence of a healthcare professional, telemonitoring is also said to enable the patient to cope better with his condition and to improve patient self-management. Such claims about the positive impact of telemonitoring on the empowerment or self-management of patients usually fail to define these goals very precisely. Rather, they seem to use these terms mainly rhetorically.

A clear definition of self-management states that it is “an individual’s ability to detect symptoms, and manage treatment, physical and psychosocial consequences, and lifestyle changes (such as exercise and diet) inherent in living with a chronic condition”.8 The term self-management thus refers both to the patient managing the disease or condition by himself and to the patient managing himself, ie, managing his life with the condition. Higher degrees of self-management can be reached, according to Redman8 by means of empowerment, which can be defined as an educational process “designed to help patients develop the knowledge, skills, attitudes and degree of self-awareness necessary to effectively assume responsibility for their health-related decisions.”9 Empowerment entails that patients are educated by healthcare workers to make informed decisions, to set health-related goals and to make health-related behavioural changes of their own choosing. This happens in an interactive process. It is directed at increasing self-management, responsibility and health-related autonomy of the patient.

Self-management of patients can be understood as a moral ideal. In a utilitarian vein, self-management is often seen as a means to increase healthcare efficiency and cut down costs; from a more deontological perspective it is seen as valuable because of its contribution to independence and autonomy of patients. It is important to see that there is a tension between these two views on the value of self-management. Holm10 has shown that pleas for more self-management in policy papers are often made with the presumption that self-management will be a more efficient form of disease management. Self-management is understood as a tool; it is considered in instrumental terms and appreciated if and when it increases efficiency in healthcare. According to Holm,10 this approach overlooks two other important patient-centred reasons to value self management: its contribution to autonomy and the fact that patients have special knowledge of their own body and their own life, which is relevant for the successful “managing” of the disease. This implies that the definition of “successful self-management” as seen from an evidence-based institutional perspective, need not coincide with the definition of “successful self-management” as seen from the patient’s perspective. For patients successful self-management may imply finding a balance between medical requirements and other values, eg, between keeping a strict diet and enjoying a good meal. This need not necessarily coincide with “successful self-management” from a policy perspective, ie, more efficiency or lower healthcare costs.

I would like to distinguish here between three degrees of self-management that can be promoted by the use of telemonitoring systems:

1. The patient takes over some practical tasks from the healthcare professional, especially the taking of measurements. The patient thus becomes an extension of the professional. This might help improve a patient’s health status or wellbeing, but it does not promote autonomy, because it does not involve any decision-making by the patient, nor are the patient’s own views or wishes involved.

2. The patient learns to manage his disease or condition in an almost professional manner. He takes over interpretative and decisional tasks of the professional; he understands the meaning of the measurement data, can interpret them and take action accordingly, eg, by adapting medication dosage or by changing certain lifestyle aspects such as fluid or food intake.11 The patient becomes a “proto-professional”12 who follows medical guidelines and knows and does what is best for him from the medical–professional perspective. The patient thus becomes less dependent on professionals—he has more executive autonomy—but he is not enabled to formulate and live his own views on “successful disease management” and quality of life, and become more autonomous in that sense. Phrased differently: compliance is promoted but the patients’ own perspective is not really empowered.iii

3. The patient is enabled and stimulated to find his own way of living with his condition, by enhancing the relevant knowledge, understanding and practical abilities of the patient. The patient can make his own decisions and choices, which may not always be the most prudent from a medical perspective but might enhance the patient’s overall quality of life or enable him to fulfill important life goals or values. The emphasis here is on autonomy understood as the positive ability to lead one’s own “chosen or embraced” life. The patient’s own views of life, his own values and goals are more prominent and are not automatically identified with medical and health-related goals and values. For patients living with a chronic illness this can also mean tinkering with everyday activities such as eating, drinking or exercising; and integrating one’s own knowledge of one’s body and one’s bodily experiences into the prescribed treatment regimen or lifestyle.10 The relationship between professional and patient is not one of compliance, but rather one of collaboration or concordance. Clinical expertise of professionals is integrated with the concerns, priorities and resources of the patient.13 14 15

The first two forms of self-management can be called compliant self-management, the last form concordant self-management. Although I cannot argue for this position extensively here, I believe the latter form of self-management to be the ideal, because it does most justice to both patient autonomy and wellbeing. This requires active participation of both patients and practitioners.iv Some professionals may be reluctant to cede more control to the patient, and not all patients will, as a matter of fact, be able to live up to this ideal. Not all patients will have the cognitive or emotional abilities, and not all patients will have the ambition, to be self-managing to the same degree. This means it is not justified to pressure patients into self-management programmes that they do not feel up to or do not want; flexible solutions are to be preferred. However, at the same time, there is a certain degree of responsibility we expect patients to take for their own health and disease management whether they feel like it or not. I will come back to these issues in the final section. First, it is important to assess what forms of self-management telecare systems actually promote.

Telecare and self-management

Current systems vary in the degree to which they merely monitor or also educate patients. Some systems primarily monitor health data and give feedback in the form of direct patient instructions: “take more medication”, “drink less”, “do your daily exercises” and the like. In such a system, hardly any active involvement of the patient is expected. Patients have to take measurements and follow caregivers instructions; they do not need to interpret data or act upon them. They do not even have to take the initiative to report complaints or symptoms, for the initiative lies with the caregiver on the “other end of the line”. If the data show that something is wrong, the patient will receive a call or electronic message. In interviews with patients using such a system some reported feeling safe and secure because as long as they did not receive a telephone call, they knew they were all right.16 17

Such systems primarily intend to have the patients perform necessary actions to get the required health data, whereas the interpretation and decision-making based on these data remais the task of the professional caregiver. The degree of self-management that is aimed at lies somewhere between (1) and (2) described above. It is primarily the professionals who manage the patient and his disease, while the patient has a supportive and executive role. As it can be phrased: patients care for themselves by following their caregivers’ instructions.

Some systems have an explicit educational function in addition to a monitoring function. Patients receive information regarding their disease through electronic messages, quiz questions or instruction videos. Although the content of this type of patient education is similar to more traditional forms of patient education, these new technological means enable the provision of more extensive information and instructions. Patients are “empowered” in a certain respect: they are enabled to make better-informed decisions regarding their own disease management and health-related behaviour, although this empowerment is predominantly directed at enhancing compliance to medical regimens. To what degree this also promotes the third form of self-management, as described above, cannot be concluded without additional empirical research, but it does not appear to be the explicit goal of these systems.v 16

Finally, many systems directly assess and promote patients’ compliance, by enquiring about the use of medication or the adherence to lifestyle rules. If the patient’s answers indicate he is not following the instructions, the healthcare professional can take action, such as calling the patient or discussing the issue at a follow-up visit. The health data generated by the telecare system are also often considered to reflect the compliance of the patient with the medical regimen. Deviation from instructions or medication regimens is noticed quickly when this results in changes in the health measurements, and can be responded upon promptly. So, telecare systems stimulate patients to keep to their doctor’s prescriptions and follow medical instructions by (combinations of) patient education, daily reminders, telephone calls, instruction videos and messages, monitoring compliance and responding to signs of deviance.

From this brief discussion it can be concluded that telecare systems are likely to promote a form of self-management in which compliance to medical prescriptions and instructions is paramount, not a collaborative or concordant form in which the patient’s own perspective is empowered.

The future of telecare: compliance or concordance?

How will telecare develop in the near future? It seems as if two factors steer towards a stricter enforcement of compliance. First, the expected technological developments in the field of telecare and telemonitoring—miniaturisation, automatisation, personalisation—will enable more intensive and more ever and omnipresent monitoring of health and health-related behaviours, and the degree to which compliance to medical instructions and a medically advised lifestyle is monitored, promoted and enforced will probably increase. It will become more difficult for patients to be non-compliant, to deviate from prescribed regimens, or to ignore lifestyle advice. At the very least, it will become much more difficult to do so unnoticed.

Second, on a normative level compliance has recently been promoted as a moral good—it has even been argued that patients have a duty to comply with medical prescriptions and regimens17 18 19 The main argument is derived from the principle of justice.vi Because the society shares the medical costs, patients have a duty to do everything in their power to reduce these costs, and therefore they should be compliant, the argument goes. Patients should do their best to get well, and not endanger their health. They must comply with medical instructions and they have a responsibility to adapt their lifestyle and live as healthily as possible because otherwise it would be an unfair waste of other people’s money. If it were generally accepted that such a duty to comply actually exists, this would raises new ethical issues for the developments in telecare. Would it be justified to use telecare systems to enforce compliance? Should there be sanctions if the telemonitoring system showed that a patient was not complying with instructions? It is easy to imagine a Big Brother scenario in which telecare systems support and enforce a paternalistic health regime legitimised by a moral argument of distributive justice.

Against this image I would like to propose a different route.

Although there are some good reasons to support a duty to comply, it is clear that this duty cannot be absolute, for this would violate the patient’s autonomy. Moreover, it seems as if a moral duty to comply could sometimes simply ask too much of patients, especially of patients whose disease is affected by everyday activities such as food and fluid intake, exercise, rest and the like. For those patients, full compliance would mean that their entire life would be regulated by medical guidelines. There should therefore be some room for deviating from rules and prescriptions and for being “unreasonable” at times. Especially with regard to lifestyle and routine activities of daily living that affect health and disease, a balance must be struck between the responsibility of the patient to take good care of his own health and his freedom to integrate lifestyle advice and instructions into his own way of life. Telecare developments should therefore emerge from a paradigm of collaborative or concordant care rather than from a paradigm of compliance. The aim should not be to promote compliant self-management but to promote concordant or collaborative self-management.

This means, first of all, that we should look for ways to enhance the interactive possibilities of new, developing telecare systems in such a way that more room is created for the patients’ own views, experiences, questions and lifestyle choices and for exchanging and discussing these with a professional. For example, education should not be offered solely on the basis of what professionals believe to be necessary for the patient to know, but also on the basis of what patients want to know. Their actual questions, worries and uncertainties could be taken as a basis for providing information and answers. Also, instead of merely asking patients for their health parameters and behaviour, telecare systems should enquire into a patient’s health-related values, opinions, priorities and the like. The patient profile emerging from the data should represent the whole person, not just his bodily functions.

Second, telecare systems ought to be flexible enough to adapt their built-in standards of behaviour or of symptom control to individual patients, and flexible enough to leave reasonable room for deviance from prescription and lifestyle.

Next, much more use could be made of information and communication technology-based possibilities for sharing experiences with fellow patients, and for exchanging solutions for everyday health-related problems. Possibilities for networking, on-line discussion groups, video conferencing and the like could be used to answer and discuss common questions and problems with groups of patients instead of with individuals. The use of telecare systems need not be limited to individual professional–patient interactions but could be used for group interactions, to stimulate contacts with fellow patients or with informal caregivers. Finally, telecare systems need not be limited to strictly medical functions such as monitoring health parameters but could also encompass social, educational and recreational elements in a way that truly helps patients to integrate their disease into their lives. Involving patients in the development of systems is a requisite to attain this.

Conclusion

Existing and emerging telecare systems promise to enhance patient self-management. However, technological developments in combination with normative and policy considerations tend towards implementing an interpretation of self-management in which compliance to a medical regime is prominent. Telecare developers—certainly the medical professionals involved, but also the technicians—should be more aware of the normative ideas regarding self-management, empowerment, compliance and concordance that lie at the heart of telecare systems and that are expressed in the specific functionalities and applications these systems get.

Instead of reproducing an outdated paradigm of patient–professional interaction in which compliance is the aim, the new technological possibilities should be seized to develop and implement a new paradigm based on collaboration and concordance.