Physical and digital proximity: emerging ways of health care in face-to-face and telemonitoring of heart-failure patients
Address for correspondence: Nelly Oudshoorn, Science, Technology, Health and Policy Studies, University of Twente, Capitool 15, Enschede, 7500 AE, The Netherlands
The introduction of telehealth-care technologies profoundly changes existing practices of care. This paper aims to enhance our understanding of these changes by providing a comparative study of health-care services for heart-failure patients based on face-to-face contacts in a policlinic (department of a health care facility treating outpatients) and remote consultations at a telehealth-care centre. I will show how changes that take place when care moves from physical to virtual clinical encounters cannot be understood in terms of a replication of existing health-care services. Instead, it is more useful to conceptualise these health-care provisions as practices that create and value other kinds of care, incorporating different forms of proximity to patients. The physical proximity created at the policlinic facilitates contextualised, personalised care in which responsibilities for monitoring are delegated to nurses and patients and heart failure is constituted as an illness. The digital proximity that characterises the telehealth-care centre supports individualised, immediate care in which responsibilities are largely delegated to technological devices and heart failure is constituted as a disease. A major policy implication of these differences is that telehealth-care cannot simply replace physical consultations without changing the nature of health care.
In the last decade, the health-care sector in Western Europe, North America, Australia and Asia has witnessed the testing and introduction of an increasing number of telehealth-care technologies covering a variety of clinical specialties (radiology, dermatology and cardiology) and different aims (patient telemonitoring, peer consultation, health advice and education).1 The major characteristic of these technologies is that health care can be provided at a distance by using information and communication technologies (ICTs), thus replacing face-to-face contacts by technology-mediated interactions. Telehealth-care technologies emerge as part of a discourse that emphasises cost-effectiveness and active involvement of patients as policy to meet the growing demand of care and the expected scarcity of health-care professionals due to demographic changes. In this discourse telehealth-care is portrayed as a means to reduce costs by delegating tasks and responsibilities from doctors to less expensive nurses, patients and technical devices (Chetney 2003, Montfort and Helm 2006). To make health care cost-effective, telehealth-care technologies will eventually replace existing health-care services.
The policy to replace face-to-face care by tele-care is based on the implicit assumption that these services provide basically the same care. The means by which care is delivered may change, but the nature of care and medicine will remain untouched. Policy makers tend to consider telehealth-care technologies as technologies rather than health care (Mort et al. 2004). Technologies are thus portrayed as neutral mediators, as just another means of delivering care. This assumption underlying the discourse on telehealth care is problematic. As sociologists of science, technology and medicine have argued, technologies are never neutral but should be considered as active transformers of health care (Berg and Mol 1998, Webster 2002). Instead of facilitating care, technologies interact with and shape the ways in which bodies and disorders are defined, treated and experienced. The introduction of technologies, such as diagnostic tools, protocols, and drugs, creates differences and multiplicity of treatments, bodies, patients and diseases rather than a coherent unity in which a technology smoothly replaces and replicates the other (Berg and Mol 1998). We thus may expect that telehealth-care technologies are likely to introduce different forms of care from the existing kinds of care.
Based on a case study, this article aims to explore the differences in care created in health-care services based on face-to-face interactions and telemediated contacts, focusing particularly on the work of nurses.2 As Cartwright (2000) has described, telehealth care has led to an increased reliance on ‘intermediary figures’ like nurses, who often have to do their work in the absence of the doctor (2000:351). Most importantly, this delegation of work is not restricted to nurses in the hospital, but also includes health-care professionals outside the traditional health-care infrastructure of clinics, namely the new category of telenurses and physicians (Cartwright 2000:351; May et al. 2005:1490, Oudshoorn 2008). The article begins with an explanation of the case study and methods, and proceeds with a discussion of relevant studies to elaborate the conceptual approach. This is followed by an analysis of the health care provided in face-to-face and telemediated nurse-patient interactions and by a reflection on the major differences between these health-care services. I will argue that telehealth-care technology is not just another way of delivering existing health care, it introduces a different form of care that redefines nursing and illness.
Case study and methods
To analyse the different forms of care that emerge in face-to-face and telehealth-care, I will compare health-care services provided by nurses at policlinics for heart-failure patients with the emerging forms of care offered to these patients by nurses at a telehealth-care centre in The Netherlands. Since the mid-1990s, major hospitals in The Netherlands have established special outpatients’ departments, known as heart-failure policlinics, staffed by the newly established nursing specialty of heart-failure nurses. In 2006 some of these policlinics participated in a clinical trial to test a telemonitoring system for heart-failure patients initiated and financed by a major Dutch health-insurance company and the medical division of one of the world's largest electronic companies. The testing of this new technology in co-operation with heart-failure policlinics enabled me to make a close comparison between these emerging forms of care.
Heart failure is a complex of complaints and symptoms caused by an impairment of the heart's pump function. Most patients can be treated with a combination of drugs, diet and lifestyle changes. In cases of late diagnosis, however, insufficient treatment or non-compliance with therapy, the disorder can eventually be fatal (Montfort and Helm 2006:33). The close monitoring of patients by specialist nurses in heart-failure policlinics or nurses in telehealth-care centres aims to support patients to adhere to a bodily regime (including medication, diet and exercises) to reduce the risk of medical crises. An early detection of worsening heart failure and its cause may prevent immediate transportation by ambulance to the hospital and admission to the emergency room (Cleland et al. 2005:1654; Anonymous 2004:17). Both health-care services are therefore expected to lead to a decrease in the number and the length of hospital (re)admissions thus reducing the costs of health care (Montfort and Helm 2006:33, Chetney 2003:680). Equally important, both health-care services aim to improve the quality of life of chronic heart patients by trying to stabilise their condition and by giving them support to play a more active role in improving their health and lifestyle (Montfort and Helm 2006:33; Anonymous 2004:17). Although there are similarities, both health-care services have adopted two different approaches to solve the tension between demand and resources. Heart-failure policlinics represent a strategy that aims to reduce costs by delegating tasks and responsibilities from cardiologists to less expensive, specialised nurses. Telemonitoring technologies for heart-failure patients can be considered as a more drastic strategy because they delegate care to a new health-care infrastructure (the telemedical centre), a new category of health-care staff (telenurses and physicians), and new technological devices.
The empirical study was conducted in the period between December 2005 and November 2007 and consisted of an analysis of relevant documents.3 Interviews were conducted with three nurses of the heart-failure policlinic of Medical Spectrum Twente (the main general hospital in Enschede, one of the five biggest cities in The Netherlands); a nurse, a physician, and a manager at the telehealth-care centre in Zwolle; a cardiologist of the Erasmus Medical Centre in Rotterdam (responsible for the scientific management of the clinical trial); two managers of the health insurance company (in charge of the testing and implementation of the telemonitoring system); and the business development manager remote patient management of the electronic company (responsible for the implementation of the system in The Netherlands and other European countries). By choosing interviews as the main method, the paper is restricted to an analysis of the perceptions of the involved health-care professionals. This may produce a different account of what goes on in face-to-face and remote consultations from a study involving observations. Nevertheless, the views of health-care professionals can be considered as very relevant to investigate because they witness and have to learn to live with the current changes in health care.
Technologies and nurses’ proximity to patients
To analyse the different forms of care created in face-to-face and telehealth-care services, I will draw on insights developed by scholars interested in the ways in which telehealth technologies challenge and transform long-standing practices of nursing. Telehealth-care technologies affect one of the major dimensions of nursing: nurses’ proximity to patients. As Ruth Malone (2003) has suggested, being close to patients has been considered as one of the key features of nursing. She defines nursing as ‘a human practice to which relationship is considered essential’. Nursing therefore depends upon ‘sustaining an often taken-for-granted proximity to patients’ (2003:2317). These traditional forms of proximity are drastically challenged by telehealth-care services because these systems separate the nurse from the patient. Telehealth-care technologies replace face-to-face contacts between nurses and patients by contacts mediated by telephone, television, web-cam, and/or electronic networks. The absence of physical contacts scripted in these technologies introduces a lack of vision (for phone- and computer-based systems) and touch (for tv- and webcam based systems). Most studies of telehealth-care services therefore emphasise the consequences of the fact that nurses or physicians cannot see or touch the patients. Because nurses are usually trained in making decisions based on observing patients, the absence of visual cues or the ability to touch the patient reduces the sources of information nurses can rely on, such as colour and texture of skin, odour and body language (Johnson-Mekota et al. 2110:32, Pettinari and Jessopp 2001:669, Wahlberg et al. 2003:43, Mort et al. 2003). Studies of telephone-based health-advice services indicate that the inability to observe visible signs of illness influences the assessment of the patients’ health condition and determining the credibility of patients (Pettinari and Jessopp 2001: 670, Wahlberg et al. 2003). The challenge to nurses, particularly but not exclusively those working in telephone-based health-care services, is that they must learn to rely on auditory rather than visual cues to know what is wrong with patients. Practices of ‘seeing the patient’ are replaced by practices of carefully listening to patients, both to what patients say as well as to auditory, nonverbal cues such as the degree of breath control and silences (Edwards 1994).
These studies provide important insights into the ways in which telenurses try to manage the absence of visual cues by developing skills and competencies to cope with these challenges. It is however important to emphasise that telehealth-care technologies should not be understood in terms of absences of vision or lack of visual cues (Wilson and Williams 2001). By doing this, we run the risk of producing accounts of what gets lost and not what is gained. What makes telehealth-care technologies so interesting as novel health-care practices is their reliance on different sources of information, including visual sources (in tv- and webcam-based systems), auditory sources (in phone-, tv- and webcam-based systems) and textual sources (in systems that rely on computerised decision-support software). In this respect, telehealth-care technologies may be conceptualised as rather similar to face-to-face monitoring that also draws on many different forms of information, materials and systems. I therefore suggest that it is important to consider both face-to-face and telehealth-care services as complex and heterogeneous practices that require skills and competencies to make sense of visual, auditory and textual sources.
In order to analyse the different forms of care created in face-to-face and telehealth care, I will use the different forms of proximity introduced by Ruth Malone. In her study of spatial dynamics of nurse-patient relationships, Malone describes different kinds of proximity that are threatened in current health-care practices: physical, narrative, and moral proximity.4 Physical proximity refers to ‘a nearness within which nurses physically touch and care for patients’ bodies’ (Malone 2003:2318). Narrative proximity is used to refer to practices in which ‘nurses come to “know the patient” by hearing and trying to understand the patients’ story’ (2003:2318). Health-care services introduced to monitor patients, face-to-face as well as remote, change nurses’ proximity to patients as performed in hospitals. Guarding the health condition of so-called ‘outpatients’ (patients who are discharged from hospital but still receive care) is delegated to nurses in outpatients’ departments or telehealth-care centres that take over the care when patients leave the hospital. Telehealth-care services clearly eliminate physical proximity, but physical proximity is challenged as well in face-to-face care because nurses in outpatients’ departments see the patient less frequently than in the hospital. Narrative proximity can be enacted in face-to-face as well as virtual encounters, but will be performed in different ways. To capture the changes related to the introduction of telehealth services, I suggest it is useful to distinguish a yet other form of proximity: digital proximity, that I define as proximity mediated by information and communication technologies. The question thus becomes: what kinds of care are created and valued or neglected in monitoring services based on physical or digital proximity to patients?
Physical proximity and care
‘Eyes can tell you more’: the importance of face-to-face contacts
Policlinics specialised in delivering care to chronic heart-failure patients discharged from hospital but still in need of care have been established in the mid-1990s. These clinics can thus be considered as a rather recent innovation in health care. The heart-failure clinic investigated in this study was founded in 2001 by Medical Spectrum Twente (MST), the main general hospital in Enschede in the Netherlands. Currently, all major Dutch hospitals run a heart-failure policlinic as part of their regular health-care services. The emergence of the heart-failure policlinics coincided with the rise of a new specialty in nursing: heart-failure nursing (Anonymous 2004:8,9). In most Dutch academic and general hospitals, care traditionally given by cardiologists has been partly delegated to this new category of nurses. In the past decade, heart-failure nursing has developed into a profession with a high degree of autonomy in which nurses can advise, educate, supervise, diagnose and treat heart-failure patients (Anonymous 2004:10).
Currently, the heart-failure policlinic at the MST hospital provides care to approximately 650 patients, which include elderly but also younger patients, and is run by three qualified nurses assisted by a research physician and supervised by a cardiologist (Interview heart-failure nurse B). Heart-failure patients are referred to the policlinic when they are discharged from hospital, particularly those patients admitted to the hospital because of asthma cardiale: severe breathing problems caused by redundant fluid that impairs the expansion of the lungs. A first consultation at the policlinic consists of anamnesis (a short history of the development of the disease), explanation of the disease, measuring blood pressure and weight5, giving advice concerning a healthy life style, and prescription of medication. Follow-up consultations consist of monitoring the health condition of patients and their compliance with medication and the bodily regime (Inspectie gezondheidszorg 2003:14).
To perform the multiple tasks involved in a consultation in the policlinic, nurses can rely on various resources to assess the conditions of patients, including an electronic patient record, measurement of weight and blood pressure, laboratory tests, and observation of the patient. The interviews with the nurses at the heart-failure policlinic show that visual cues are valued as crucial. Nurses emphasized the importance of ‘seeing the patient’. Or as one nurse put it:
The looks of a patient can tell you how they are doing . . . I want to see how tight in the chest he is, how swollen his legs or how blue his hands or lips are. I want to see it (Interview heart-failure nurse A).
As has been described for other nurses (Johnson-Mekota et al. 2001; Pettinari and Jessopp, 2001), the heart-failure nurses in the policlinic experience nursing as a profession with a visual attitude, although listening to patients to detect shortness of breath is considered as important as well. In the stories nurses told us, they easily switched between visual and auditory cues as important elements in their assessment:
Nurses are very much attuned to vision. This is what you learn in your training: ‘are there changes, do you notice anything when you look at the patient? Does he have swollen feet? Is he short of breath?’ You listen to the patient. You just look at the patient (Interview heart-failure nurse C).
Although auditory resources thus play a role in the evaluation of patients’ accounts of their illness, nurses prioritise visual cues. According to nurses, patients may often tell them they are doing fine, also when they have swollen feet or breathing problems:
Sometimes patients don't tell you what is wrong, simply because they don't want to be ill . . . In the policlinic I can see them. Maybe very simple, but this is how it is (Interview heart-failure nurse C).
Visual resources are considered as even more important than the objective measurement of blood pressure:
Look, a blood pressure tells you a lot, but not everything. Someone can have a nice blood pressure but look very miserable. A blood pressure does not reveal that. Therefore you want to keep seeing your patients. Eyes can always tell you more than . . . (Interview heart-failure nurse B).
Visual cues are thus valued more than other resources, particularly in those cases in which nurses detect contradictions with the measurements of bodily indicators or the accounts of patients (Interview heart-failure nurses B and C).
The ‘crying policlinic’: knowing the patient and psycho-social care
Physical proximity at the heart-failure clinic is not only important to monitor the physical condition of patients but plays other important roles as well. First, physical nearness enables nurses to communicate with patients with hearing deficiencies or patients who don't speak the Dutch language, particularly elderly immigrants from Turkey and Morocco. In face-to-face contacts with these patients, nurses can rely on non-verbal communication, or ‘talking with your hands and feet’ (Interview heart-failure nurse B). Physical encounters at the heart-failure clinic also enable recently immigrant patients to invite an interpreter, often a close relative, to accompany him/her to the consultation (Interview heart-failure nurse B).
Secondly, physical proximity enables nurses to build a relationship with patients, or as one nurse put it:
I simply realised that a tie arises between patients and us as heart-failure nurses. It is definitely different from the cardiology department in the hospital. You have much more time for people. People trust you very much (Interview heart-failure nurse C).
These close relationships between nurses and patients play an important role in lowering the threshold for patients to call nurses in case they gain weight or experience breathing problems. This is important because an early detection of the problem may prevent immediate hospitalisation (Interview cardiologist A). Knowing patients personally also plays an important role in learning to interprete patients’ accounts of their illness. Because of the wide variety in which patients voice their complaints, ranging from exaggerating to underestimating heart-failure symptoms, nurses have to rely on their knowledge of patients’ characters to decide how they should evaluate a patient's story.
As with nurses, cardiologists also consider it as crucial to ‘know the patient’, not only to interpret the ways in which they voice their complaints but also to differentiate between the various ways in which heart-failure symptoms are expressed by patients, and even value this more than actually seeing the patient:
If I have seen the patient several times, and I know the patient, then you can tell ‘this is the weak spot of the patient’. If you know patients then you can tell that if they are not doing well they don't eat any more. Another patient will be more short of breath. If you know these nuances of patients I can tell by phone, without seeing him, that he should visit the clinic (Interview cardiologist A).
Coming to know the patient thus seems to take place particularly during face-to-face contacts at the beginning of the care trajectory. If relationships with patients are well-established, ‘seeing the patient’ becomes less important and a first assessment of the seriousness of patients’ complaints can be done by phone. What all these experiences indicate is that physical proximity enables nurses to come to know the patient as a person as well as his/her illness. This is in line with Malone's argument that physical proximity is important to create narrative proximity, a term she introduced to refer to processes in which ‘nurses come to “know the patient”, by hearing and trying to understand the patients’ story’ (Malone 2003: 2318). Narrative proximity can thus be considered as an important aspect of nursing at the heart-failure policlinic and is crucial for the kind of care provided at this clinic.
Finally, physical proximity enables nurses to give support to patients to cope with the disease. The diagnosis of heart-failure has severe consequences for patients. They not only have to change their lifestyle and diet, take their medicines regularly, or measure their weight and blood pressure daily, they also have to learn to come to terms with the eventual fatal consequences of the disease. Learning to cope with the disease may involve intensive psycho-social stress for which patients often cannot find adequate support in their own environment. Therefore, heart-failure clinics consider the provision of psycho-social support as central to the care they give to patients. Actually, psycho-social care can be considered as one of the major achievements of heart-failure policlinics. Prior to the existence of these outpatients’ departments, care for heart-failure patients was restricted to medical care (Interview heart-failure nurse A). Psycho-social care is not only provided to patients but also given to their close relatives. Close relatives, often the partner, are explicitly invited to accompany patients to consultations at the heart-failure policlinic. Nurses thus have to take care of emotions of patients and their partners. Consultations at the heart-failure policlinic often involve expressions of strong emotions and a lot of crying. Consequently, the heart-failure policlinic is often referred to as the ‘crying policlinic’ (Interview heart-failure nurse A). Psycho-social care is not only provided at the policlinic; nurses also organise thematic afternoons and refer patients and their partners, often separately, to social workers at the hospital (Interview heart-failure nurse A). Contacts with partners of patients also provide nurses with an extra resource to come to know what the illness means in daily life for the patient and her/his family, including problems related to compliance to the bodily regime and medication. Patients’ partners are thus crucial to realise the two aspects of narrative proximity as described by Malone: they inform nurses about the illness of the patient, and, vice versa, nurses can transmit their knowledge to ‘others’, in this case partners who care for patients. Actually, heart-failure nurses go even one step further. They not only transmit their knowledge to partners, but also invite them to play an active role in the care for patients, particularly to help (male) patients keep to their diet. Nurses thus enrol partners as important intermediaries to extend their span of control over patients’ compliance to the patients’ home. As the provision of psycho-social care, the involvement of partners in care is one of the major achievements of the heart-failure policlinic
Summarising, we can conclude that the physical proximity to patients created in the policlinic facilitates a contextualised and personalised care: patients are approached as part of a relational setting and care plans are attuned to the character and life style of the patients. In this form of care, nurses act as counselors of patients and have a high degree of autonomy. Responsibilities for monitoring, including diagnosis, supervision and treatment, are delegated primarily to nurses.
Digital proximity and care
Building relationships with patients: the importance of phone contacts
As heart-failure policlinics, telehealth-care centres are a rather recent innovation in the delivery of health care to chronic patients. The telehealth-care centre investigated in this study, the Medical Service Centre, was established in 2002 by one of the major health-insurance companies in the Netherlands. The telehealth services provided by this Centre include a health-advice line; health assistance during holidays (‘the holiday doctor’) and co-ordination of transport services to hospitals (Interview managers health-insurance company). All these services are based on a computer-assisted triage system run by 50, often part-time, employees (Interview telehealth nurse and physician). In January 2008, the Health Insurance company included the telemonitoring service for heart failure patients, they had tested in the previous years, in their basic insurance policy. This implies that heart-failure patients who are insured by this Company can receive this form of care without additional costs (Zilveren Kruis/Achmea 2008).
The telemonitoring system consists of wireless devices for daily measurement of weight and blood pressure. These measurements, collected by patients at home, are automatically sent to the telehealth-care centre. In case of deviant measures, the telemonitoring system gives a signal to telenurses who phone patients to ask them why they have failed to keep their weight and blood pressure within the set standards. Consequently, telenurses inform nurses at the heart-failure policlinic who have the authority to change medication or to organise a visit to the heart-failure clinic or the cardiologist. Telenurses also give feedback to patients by providing ‘educational material and motivational messages to encourage prescribed medication, exercise and lifestyle’ (Balk et al. 2007: 56). These messages are sent by broadband connection to the home television of patients. The new service of the telehealth-care centre is run by four qualified nurses and a general practitioner, who assists in emergency situations and is charged with the end responsibility of the service (Interview telehealth physician and nurse). The nurses have experience with computerised decision-support software and have received additional training to become familiar with heart failure. In the period of this study, the Medical Service Centre provided care to 100 heart-failure patients who used the system for one year. The Centre operated on week days during office hours.
As described above, telehealth-care technologies introduce a major change in nurses’ proximity to patients. Whereas heart-failure nurses in the policlinic interact with patients face to face, telenurses rely on computer- and phone-mediated contacts. Instead of open communication initiated by nurses or patients, nurse-patient interactions at the telehealth-care centre are guided by the telemonitoring system and a computerised clinical assessment system (TAS). Physical proximity is thus replaced by contacts mediated by information and communication technologies. What are the consequences of this shift to digital proximity for nurse-patient interactions and the kind of care provided by the telehealth-care centre?
Practices at the telehealth-care centre show how the telemonitoring system provides nurses with a strict regime of nurse-patient interactions. Nurses are expected to phone patients when their computer screen shows a ‘flag’ to signal that patients’ weight or blood pressure exceeds the allowed standard. The phone call to patients is structured along three leading questions: ‘How are you doing at the moment?’‘Has anything changed in the past few days?’‘Are there any changes in your medication?’ (Achmea Zorg Services 2006:17). After a short conversation, nurses begin asking questions guided by the TAS-system in order to determine the urgency of the health problems of the patient. Depending on the cause of the deviation, telenurses may contact the heart-failure policlinic to ask them to change medication. In case of changes in medication, the telenurses call patients again to ask them to measure their weight and remind them to adhere to their diet. The next day they will phone again to hear whether the patients’ health condition has improved. This surveillance sometimes involves regular calls during several days or a week. In case patients still have complaints and their weight is not reduced, they will be referred to the heart-failure policlinic (Achemea Zorg Services 2006:21,22).
As heart-failure nurses, telenurses consider ‘knowing the patient’ as an important aspect of providing care. But how do nurses manage to build relationships with patients if they don't meet them in person? The interviews with nurses at the telehealth-care centre indicate that the frequency of phone contacts is an important condition to create relationships of trust with patients. As with physical proximity, digital proximity has a temporal dimension that depends on a minimum of contacts to create the nearness to patients required to provide proper care. Because nurse-patient relationships cannot be established in face-to-face contacts, the temporal dimension becomes more consequential. The script of the telemonitoring system is that nurses are only allowed to contact patients in case of deviating weight or blood pressure. Consequently, the frequency of contacts with patients who don't exceed the set limits will be very low. Nurses consider the restrictions on phone contacts scripted in the technology as the most difficult aspect of telemonitoring, or as a nurse put it:
When patients are not doing well you may have daily contacts for a certain period. But with people who are doing fine you may have contact only once in four months. This is the difficult side of telemonitoring: it is not so much the technical aspects, or the interpretative work, but to gain patients’ confidence (Interview telenurse).
The team leader of the telenurses articulated similar concerns and emphasised the ambivalence created by the technology:
This is the difficulty with our role in telemonitoring. On the one hand we would like to have contacts with patients; on the other hand, we notice that there is less need for contacts because of the telemonitoring system. Our experiences with the diversity among patients is that some patients prefer to have frequent contacts whereas others would like to have fewer contacts. It is very hard to find the right balance (Interview telehealth-care team leader).
To meet their own standards of care, telenurses established a practice in which they overruled the script of the technology, or as the physician told us:
In the beginning we did not call without any reason. When there was no medical indication, we did not call and we could not build a relationship. We take more initiatives now and then you learn that there is a willingness. But it takes time and you will have to find a good modus for each patient (Interview telehealth-care physician).
Telehealth-care workers thus prioritised their own experiental knowledge over the rules prescribed by the telemonitoring system. In their view, the technology had taken over too much of their responsibility. Because nurses are trained to grasp the whole situation before deciding on the care they can give, they wanted to keep the initiative to contact patients in their own hands instead of delegating this to the technology (Interview telenurse and physician). For telehealth workers frequency of contact is thus not only important to build trusting relationships with patients but also to gain control over the care they give.
‘Your ears become your eyes’: assessing physical changes
As described above, the most important difference between nurse-patient interactions in the policlinic and the telemedical centre is that telenurses can only use the phone to talk to patients whereas heart-failure nurses can communicate through the phone and face to face. For telenurses it took some time to become accustomed to the absence of visual resources. Or as the telephysician explained:
Not seeing is the big difference. In the beginning we had to get used to it very much. You are used to making your diagnosis or creating an understanding through a combination of what you hear and body language. Sometimes this does not match. Also, someone can look pale or is sweaty; these kinds of things are left out when you work with telephone contact only (Interview telephysician).
Colour or moisture of skin and body language are thus considered as important visual clues that are absent as resources for telenurses’ work. Because of the lack of visual resources, active listening has become a crucial skill to assess the health condition of patients. Or as Pettinari and Jessopp (2001:672) have captured nurses’ work at health-advice lines so nicely: ‘Your ears become your eyes.’ A similar practice has been established at the telehealth-care centre. All nurses have received training to become acquainted with phone communication and have developed specific skills for active listening in their previous work for other telehealth services at the centre. Or to quote the telephysician's experience:
The ear is equally important as the voice. During my work at the doctor's advice line we have learned a completely different way of listening. We are very much used to listening, to listen between the lines, that is what we have developed. And it really works, maybe even more than for someone who is used to seeing people and only lifts the phone once in a while. You can hear the breathing, the surrounding environment, the anxiety of the people nearby, or the partner. These things also tell you something (Interview telephysician).
To make up for the lack of visual clues, telehealth workers not only depend on skills to listen, they also rely on communicative skills. For those physical indications of poor health nurses cannot see, they will ask specific questions such as the colour of skin, whether patients feel tired, or whether they sweat. Or as the physician told us: ‘What I cannot see, I have to ask’ (Interview telehealth physician). Communication skills are very important to provide care for heart-failure patients, not only because nurses cannot see the patients but also because they constitute a difficult category of patient. Because of the chronic nature of their illness, the symptoms of heart failure are often more subtle than for acute diseases. Moreover, patients have become used to living with some pain, or being tired, or to having a swollen leg once in a while. Learning to keep asking questions is thus an important skill that requires intensive training and learning by doing. Usually it takes several months before telenurses have acquired this skill (Interviews telehealth physician and telehealth-care team leader). Communication skills are thus crucial resources for providing care at a distance. In the end, however, telenurses very much rely on their intuition:
You can never switch off your what we call ‘wrong-not wrong’ feeling. That is a sixth sense that you have and in which you have to learn to have confidence. If you have developed this then you learn to trust it and you don't deny it. Even if someone gives only negative answers on all your questions and the TAS-system remains white [ no score of urgency]: at the moment that your sixth sense tells you ‘something is not right’, you have to act accordingly (Interview telehealth physician).
Equally important, telenurses have learned to accept the boundaries of the care they can provide. In situations where the physician thinks it is important to do physical examinations such as using a stethoscope, they will refer the patient to another health-care professional. Knowing when to refer to other health-care providers is considered as an important expertise of telehealth workers (Interview telehealth physician).
From obstacle to provision of equal care: the advantage of not ‘seeing the patient’
Based on their training and experience, health-care professionals at the telehealth-care centre have learned to consider the absence of face-to-face contact with patients as a challenge rather than something ‘scary’, a feeling they initially had (Interview telehealth physician). In the interviews they emphasised that there were also advantages when you don't have face-to-face contacts with patients. Because of someone's appearance, nurses are often inclined to create a certain image of the patients’ personality and health condition, or as the physician put it:
The advantage is that you will treat each patient the same way because you don't have any prejudice, you don't think: ‘Oh, what a theatrical person’ (Interview telephysician).
The absence of visual clues thus prevents telehealth workers from making too quick judgments based on visual features alone. Most crucially, not seeing the patient is transformed from an obstacle to the provision of proper care into a condition that facilitates equal care for all patients, independent of their appearances. These experiences of telehealth workers thus show an ambivalent view of vision. On the one hand, telehealth workers consider visual clues as relevant resources to assess the health condition of patients and have to put in quite some effort to make up for the absence of visual resources. On the other hand, telehealth workers experience seeing the patient as a disadvantage because their judgment on patients’ appearances provides a constraint on giving adequate care. The interviews with telehealth workers thus indicate that they have developed skills to deal with and carefully balance the perceived disadvantages and advantages of the absence of physical proximity.
The experiences of telenurses also show an important difference in narrative proximity created in the telehealth centre compared to the heart-failure policlinic. Whereas heart-failure nurses constructed their assessment of the patients’ conditions on various bodily indicators and patients’ and their partners’ stories about the illness, telenurses rely on a more limited set of medical indicators (only weight and blood pressure and no lab tests) and patients’ answers to pre-structured questions of the TAS system that do not include psycho-social accounts. The narrative proximity created at the telehealth-care centre is thus more focused on bodily indicators of patients’ health condition. Moreover, the use of pre-structured questions reduces the chance of proximity rather than encouraging it. Reflecting on the second aspect of narrative proximity as described by Malone, i.e. how nurses transmit their knowledge to others, the telehealth-care centre also shows a different picture from the heart-failure policlinic. Instead of transferring knowledge to patients and their partners, the telehealth-care centre transfers knowledge primarily to patients. Graphs of weight and blood pressure, videos to explain the illness or to give advice on diet, and overviews of medication are sent to the patient at home. Although partners or other family members or other residents can look at the data as well, if the patient allows this, the graphs are meant as tools to provide self care. Although others can give support to patients’ self-care, they are not actively enrolled in providing or supporting care. Digital proximity thus creates a narrative proximity in which partners or others who care for patients are not included or made responsible.
On the other hand, digital proximity facilitates a form of care that provides patients with systematic tools for self-care, a resource that is not available to patients who receive care in the heart-failure policlinic. Although heart-failure nurses also encourage patients to take care of their health, the telemonitoring system transforms self-care into an obligation. If telenurses don't receive the patients’ daily measurements of weight and blood pressure, they will remind them about these. Telemonitoring technology thus changes health care for heart-failure patients drastically because it introduces a daily surveillance of patients’ health condition that enables quality control over the patient's self-care. Whereas care provided by heart-failure policlinics is characterised by monitoring the health condition of patients in regular time interludes, telemonitoring provides a form of care in which diagnosis is transformed into a continuous process. The increased temporal nearness to patients facilitates a form of care in which patients receive immediate care (medication or hospital admission) in a case of medical crisis.
Summarising, I conclude that digital proximity creates an individualised, immediate care that encourages a specific form of self-care of patients. In this form of care, nurses are granted much less autonomy than nurses at the policlinic. The telemonitoring system provides nurses with a strict regime of nurse-patient interactions in which responsibilities to detect changes in a patient's physical condition are delegated to the technology. Moreover, responsibilities for changing medication are delegated to health-care professionals at the policlinic.
Based on my analysis of the perceptions of the involved health-care professionals, I conclude that telehealth-care technologies are not simply another means to deliver existing health care. The telehealth-care service for heart-failure patients investigated in this study does not replicate the conventional health care provided at the heart-failure policlinics; it introduces a different kind of care. The major differences between the two health-care services are summarised in Table 1.6
Table 1. Different forms of care in face-to-face and telehealth-care services for heart-failure patients
|Physical proximity||Digital proximity|
|– intermittent monitoring||– daily monitoring|
|– open communication||– protocol-driven communication|
|– medical interventions and advice||– control and advice|
|– nurse as counsellor||– nurse as surveillant|
|– psycho-social care through dialogue||– psycho-social care through video|
|– self-care as option||– self-care as obligation|
|personalised care that||immediate care that|
|constitutes heart failure as illness||Constitutes heart failure as disease|
This overview clearly shows that changes taking place when care moves from physical to virtual clinical encounters cannot be understood in terms of replication. Instead, it seems to be more useful to conceptualise face-to-face care and telehealth-care as practices that create and value other kinds of care. The physical proximity created at the heart-failure clinic facilitates contextualised, personalised care in which open communication and dialogue with patients and their partners are valued as important aspects of medical and psycho-social care. The digital proximity that characterises the telehealth-care centre supports individualistic, immediate care in which protocol-driven communication, daily surveillance, and self-care emerge as important dimension of care. Most importantly, both health-care services do not leave the established practices of nursing and medicine untouched. First, they actively intervene in and shape the autonomy of nurses. In the policlinic, responsibilities for monitoring, including diagnosis, supervision and treatment, are primarily delegated to nurses. Heart-failure nurses act as counsellors of patients and have a high degree of autonomy. The telehealth-care nurses are granted much less autonomy. In this telemediated environment responsibilities for detecting changes in the health condition of patients are largely delegated to technical devices. Moreover, the responsibility to change medication is delegated to health-care professionals at the policlinic. Telenurses are expected to act primarily as surveillants who control the physical condition of patients based on the information provided by the telemonitoring technology and the computerised clinical assessment system. This paper thus contributes to recent debates on autonomy and responsibilities in health care. Whereas other researchers have described how technologies shape the autonomy of patients (Lehoux et al. 2004), this study indicates that technology plays an active role in redefining the autonomy of nurses. The introduction of the telemonitoring technology for heart-failure patients implies that nurses are only allowed to act when the system has detected a deviation from the set standards for weight and blood pressure. This study shows how telenurses sometimes resist this form of nursing because they consider it important to have more contact with patients than the system allows in providing care that meets their own standards.
Secondly, face-to-face and telehealth-care services not only shape the autonomy of nurses, they also introduce different definitions and treatments of heart failure. The physical proximity in the policlinic facilitates open communication and enables nurses to come to know the patient as a person as well as her/his disorder. As we have seen, patients’ and their partners’ experiences and feelings play an important part in the monitoring of patients. Equally important, the care provided to patients is not restricted to medical care but also includes psycho-social care. Psycho-social care can be considered as the major achievement of heart-failure policlinics when compared with conventional care provided by cardiologists. Drawing on the distinction between illness and disease commonly used in social studies of medicine (Mol 2002:9), in which illness refers to health-care practices that include medical and psycho-social aspects and take into account patients’ stories and experiences, whereas disease refers to practices in which the treatment of disorders only relies on medical expertise of health-care professionals, I conclude that the care provided at the policlinic constitutes heart failure as an illness. In contrast, the focus on the physical condition of patients and expertise of health-care professionals in the telehealth-care centre constitutes heart failure as a disease. The daily surveillance of bodily indicators assisting immediate medical care in case of crises can be viewed as the main asset of telehealth-care services. However, the definition of heart failure as a disease also has disadvantages for patients because it neglects psycho-social aspects of care. The choice to provide care based on physical proximity or digital proximity can thus be consequential for the ways in which disorders are defined and treated: as illness or disease.
A major policy implication of these differences between the two health-care provisions is that telehealth-care services cannot simply replace face-to-face care, as advocates of telehealth-care technologies often argue. Instead, policymakers should carefully balance the advantages and disadvantages of these health-care services for specific groups of patients and different phases of their illness.
I would like to thank Ivo Maathuis for conducting and transcribing the interviews and Aggie Balk, Trix Borst, Pieter Boutkan, Hanneke Glazenburg, Judith Grooters, Mathilde Helm, Judith Sorgdrager, Janneke Roukema, Anita van der Wal, and Jelle van der Weijde for sharing their experiences with the care they provide to heart-failure patients and for their views concerning the testing, implementation and use of the telemonitoring system for heart-failure patients.
See Lehoux et al. 2002 for references to these various technologies.
Although it is important to study patients’ experiences with telehealth technologies as well, I have decided to present the accounts of patients in another paper.
The documents included guidelines for the training of telenurses, the protocol of the computerised clinical assessment system used in the telehealth-care centre, policy documents on the profile of the heart-failure nursing profession and patient care, and an internal report on the clinical trial.
I will only focus on physical and narrative proximity because moral proximity, ‘in which nurses encounter the patient as other, recognise that a moral concern to “be for” exists, and are solicited to act on a patients’ behalf’ (Malone 2003:2318) falls out of the scope of this study.
Weight is an important indicator because a sudden increase in weight may be caused by retention of fluid related to an increased dysfunction of the heart pump.
I have included this table to tease out relevant issues for the conclusion, rather than presenting a fully descriptive overview of the differences between face-to-face and telehealth care services.