Advanced home care technology: moral issues surrounding a new healthcare practice

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1 Advanced home care technology: moral issues surrounding a new healthcare practice Council of Public Health and Healthcare Maartje Schermer, PhD Jessica van Kammen, PhD THIS REPORT HAS BEEN DRAWN UP BY THE CENTRE FOR ETHICS AND HEALTH Zoetermeer, June 29,

2 Centre for Ethics and Health The Centre for Ethics and Health (Dutch abbreviation CEG) is a joint venture of the Health Council (Gezondheidsraad) and the Council for Public Health and Health Care (Raad voor de Volksgezondheid en Zorg). Under this heading, both advisory councils produce short alerts, identifying developments that, from an ethical point of view, merit the government s attention. These are intended to serve as building blocks for the Health Ministry s Ethics and Health policy agenda, which is appended to the national budget each year in September. The CEG s annual Ethics and Health Monitoring Report (in Dutch) provides a compilation of these alerts. In June 2004, the second of these monitoring reports was presented to the State Secretary of Health. It contains alerts on six topics, including the one on Advanced home care technology, presented here in translation. Via its website the CEG also functions as a source of information on ethical issues in the field of (public) health. 2

3 Contents 1 Introduction 4 2 The rise of home care technology 5 3 Analytical framework 7 4 Changes to the domestic situation 10 5 Changes to care arrangements 13 6 Changes in funding 17 7 Conclusions and recommendations 20 Bibliography 22 Appendix 24 3

4 Advanced home care technology: moral issues surrounding a new healthcare practice 1 An increasing number of types of medical technology are becoming appropriate for home application. In addition, developments in demand for and supply of healthcare are leading to an increased use of home care technology. However, transferring hospital care to the 'domestic' setting does bring about changes to the home set-up, to the way care is arranged and funded, and to the technology itself. These changes can give rise to new ethical questions. This report looks at issues surrounding 'built-in norms' in the technology, the way that tasks and responsibilities are assigned to various groups of people involved in providing care, the arrival of new facilities such as monitoring centres and partitions in the funding of home care technology. The key ethical problems that arise here relate to limited and unequal access to home care technology, freedom of choice, quality of care and privacy. 1. Introduction Home care technology is technology that allows paramedical and medical interventions to be undertaken outside the walls of healthcare facilities. It is becoming increasingly possible to use various forms of medical technology in the home, though not every domestic situation will lend itself to every conceivable technology. Relocating paramedical and medical interventions into the home leads to a number of consequences for the content and organisation of the care, and raises new ethical issues and dilemmas. This report deals with the changes brought about by the use of home care technology and the ethical aspects of these changes. A parallel report drawn up by the Health Council report (Chapter 4, 2004) specifically looked at changes to the domestic situation. This report focuses more closely on the organisational and financial aspects. First, we describe the current situation with regard to home care technology in Section 2. Then, in Section 3, we introduce a theoretical framework that may help in analysing ethical aspects of home care technology. We subsequently investigate the changes that result from home care technology in terms of the home situation (Section 4), the organisation of care (Section 5) and funding (Section 6). Each Section looks at the ethical issues and dilemmas associated with these changes. These relate mainly to unequal and limited access to home care technology, the quality of care, the assignment of responsibilities, the freedom of choice available to patients and informal carers, and privacy. The final Section puts forwards some suggestions for future policy in this area. 1 Original author: Dr. JR van Kammen, ZonMw, report written by Dr. MHN Schermer, advisor to CEG/RVZ. The full text of the Van Kammen background report can be consulted at Report on ethics and health _ RVZ 4

5 2. The rise of home care technology Definition of terms 'Home care technology' is a relatively new term that has as yet not been clearly defined. Broadly, it relates to all forms of technology that are used in order to allow a patient to remain at home for as long as possible and to return home from a healthcare facility as quickly as possible. Sophisticated equipment can be used in a domestic setting to provide medical treatment, to monitor the patient or to help in nursing him or her. There are also much simpler devices that help patients and any informal carers in providing day-to-day care for the patient and in allowing him or her to function independently. The use of this technology is also referred to as transferred hospital care'. The disadvantage of that term is that it fails to reflect the specific nature of this new form of care. It implies that hospital care is being transferred to the domestic setting, but that nothing else changes. But transferring technology to the home setting does produce real changes, both to the home situation and also to the way in which care is organised and funded. Another drawback of the term transferred hospital care' is that it suggests that this care can only be developed and delivered by a hospital. In practice, however, a wide range of providers are involved, including hospitals, home nursing organisations, specialised centres, private firms, and various forms of multidisciplinary teams. We therefore prefer to use the term 'home care technology'. This report concentrates on advanced home care technology used in monitoring, supporting bodily functions and administering treatment. Examples of this technology currently used in the Netherlands include: Monitoring: measuring blood pressure and blood glucose, monitoring cardiac failure, measuring clotting values, monitoring pregnancy and oximetry. Support of bodily functions and administration of treatment: artificial ventilation, peritoneal dialysis and haemodialysis, catheter-administered nutrition, treatment of sleep apnoea, light therapy, blood transfusion, intravenous chemotherapy, administration of antibiotics and pain-killers using infusion pumps, traction, and nebulisers. In addition to sophisticated home care technology, there are also forms of technology that make day-to-day care at home easier and help patients remain independent. Examples include bathing and toileting aids, devices used to prevent bedsores, and mobility aids of varying sizes that help patients move about and relieve the burden on informal carers. These relatively simple (medical) devices are extremely important to proper patient care in the home. In future, domotics and robotics may become very significant in enabling recipients of care to remain independent for longer periods and in easing the task of informal carers (Van Boxsel 2000, Rathenau 1997). However, these forms of technology are not the subject of this report. Reasons for increasing use Home care technology is growing both in quantitative terms and in what it is able to offer. The increasing use of sophisticated domestic care technology has come about as a result of developments in the demand for and supply of care, and in the available technology. Developments in demand for care There is a growing demand for technology that can be used in the home. People are living longer, but this means that they spend more of their lives in poor health (OECD 1998). The changing make-up of the population in terms of overall numbers, age and sex means that we 2004 Report on ethics and health _ RVZ 5

6 can expect the prevalence of age-related disease to rise by between 25 and 60% over the next twenty years. Most of the conditions in this category will be chronic diseases such as cardiovascular disease, diabetes, chronic lung conditions, locomotor system disorders, various forms of cancer, dementia and sensory disorders (Ruwaard 1997, Murray en Lopez 1999). These demographic and epidemiological trends will lead to changes in both the extent and nature of the demand for care. Traditionally, the healthcare system and the use of technology has been targeted principally at preventing death and at cost management. In future, the emphasis will shift towards nursing, care, and preventing complications associated with chronic conditions. Sociocultural trends will also lead to changes in the nature of the demand for care. Most people want to retain their independence and freedom of movement for as long as possible. Home care technology can play an important part in this. Developments in the supply of care The supply of care is changing, too. This is due, among other things, to technological progress and the rationalisation of the care process undertaken by the authorities and healthcare insurance providers (RVZ 1998). These developments have led to healthcare institutions adopting policies aimed at reducing admission times. The rise of minimally invasive surgery also allows people to spend less time in hospital and accelerates patient flow. In-patient times have been falling steadily over the past ten years (Wasowicz 1998). A patient undergoing gall bladder surgery years ago ten would spend ten days in hospital, but now this procedure does not require an overnight stay. Patients who are discharged early need more intensive postoperative monitoring at home. Shorter in-patient times and the opportunities offered by technology have led to new players joining the sector and to a reassignment of roles. Medical procedures that were previously only possible in hospital are now carried out at home (STOOM and KITTZ, 1999a and 1999b). Domestic versions of treatment techniques originally designed for hospitals are being developed. Housing associations, firms specialising in particular syndromes and call centres now have a role in the provision of care. Medical insurance providers are interested in running these centres and in the information that they generate. Firms that operate alarm response systems used by vulnerable people see opportunities for expanding the services they provide by offering medical and care monitoring. Providers of home care technology are also taking on new tasks in patient care. Not only do they install, maintain and service the equipment, they might also tailor it to the patients requirements and respond to alarms. Technological developments Remote care has become a more feasible option thanks to developments in sensor technology measuring pressure, fluid, movement, location, various physiological parameters (lung and heart function; including ECG, blood pressure, heart and muscle action), blood values (such as glucose, oxygen and clotting), and testing of urine and faeces. These techniques can be applied in the context of long-term and post-operative care at home. The incorporation of ICT into sophisticated sensors and medical equipment is vital in supporting patients at home, partly because it allows the equipment to be adjusted and remotely read, but also because it facilitates telemaintenance. The increasing ubiquity of PCs, 'handheld' computers ('palmtops'), the Internet and web browsers also broadens the options for (para)medical and nursing care in the home. Image displays (via webcam) and two-way voice connections are used in this context. Other important factors in the provision of (medical) care at home are developments in voice technology, moving images that can be transmitted via broadband, and mobile applications (EZ 1999) Report on ethics and health _ RVZ 6

7 Miniaturisation has led to the development of portable, powerful, energy-efficient applications, which means that healthcare provision is becoming less location-dependent. It is important that equipment to be used to provide (medical) care in the home has a well-designed user interface. Developments in operating systems and a certain degree of standardisation of displays mean that equipment is becoming increasingly easy to use in a variety of ways (Van Kammen 2002). 3. Analytical framework Increased use of home care technology will lead to changes in the home situation and the way care is arranged and funded. Before going into these changes and their ethical consequences, let us first explain the analytical framework we will be using. Script approach The underlying view of technology we are taking in this report is the 'script approach'. This approach makes it clear that the significance and effects of home care technology is shaped by an interactive process in which users and their intentions, the context, and the design features of equipment all have a role to play. The 'script' concept was introduced by the French technology sociologist Madeleine Akrich to understand the effect of technology in interaction with its users. Akrich says that technologies contain a script, technical objects that define the ways in which they can be used together with the actors and the setting in which they are assumed to operate. Just like a script for a film or a play, technologies contain rules as to the assignment of responsibilities and ascribe roles to users and other parties involved. The 'script' concept allows the effect of technology to be analysed in a manner that is neither deterministic nor voluntaristic (Akrich 1992, 1995). For example, nebulising equipment is used to administer drugs to patients with respiratory tract conditions such as asthma, COPD and cystic fibrosis. The script of nebulisers for domestic use states that the accessories must be cleaned regularly if the device is to work properly. The properties of the equipment assign this task to the user. But this script is the result of a design process in which designers are constantly taking decisions, whether deliberately or not, on the basis of countless technical and economic factors (such as material properties, structure of the market), individual competence, preferences and experience, company features (such as the structure of the design office and the company's market profile), knowledge and assumptions with regard to intended users, estimates of future trends, et cetera. Thus, the script might have been different. For instance, nebulisers could have been designed in such a way that the accessories could be put in the dishwasher, or they could have been made disposable. The underlying idea is therefore that the technology itself has a role in determining how care is provided. It plays this role in interaction with the users and the context of use. This view of technology has consequences for ethical analysis. First, it allows us to avoid a number of known pitfalls in considering ethics and technology. Second, this approach means that a normative analysis of home care technology cannot be limited to the material objects. It must also comprise the design phase and the sociotechnical arrangement of which the technology is a part. Technology is not just the equipment. Technology is part of the overall package of care. For example, the technology imposes certain requirements on the social network (Health Council 2004), but in turn the context in which the technology is placed also has an effect on how it functions Report on ethics and health _ RVZ 7

8 Finally, this view of technology also allows the unintended and unforeseen effects of technology to be highlighted. Pitfalls The script approach allows us to criticise three very common but incomplete views of technology in care. These are pitfalls that can stand in the way of a proper analysis of ethical dilemmas. The following are the views in question: 'technology is bad', 'technology is good' and 'technology is neutral'. 'Technology is bad' represents the idea that equipment stands in the way of the essence of good care. There was a dominant train of thought, particularly in the development of palliative care for terminal patients, that held that the use of sophisticated technology impaired a dignified death. Some recipients of care find that a PC on the desk in the GP's surgery creates distance. This applies even more strongly to all forms of telemedicine. This is not a new concern. One of the first medical devices invented was the stethoscope, introduced in Even back then, French newspapers were writing that the device would come between the patient and the physician. 'Technology is good'. Set against the fear that technology might have negative effects is the expectation that technology will lead to better care. Some authors expect telemedicine to improve access to care and think that home care technology gives patients more power to decide how to use their own time (Thie 2001, De Vries 2002). This hope that (communications) technology will bring us closer together is also not new. But the question is, how far is this hope realised? Forms of telemedicine might also lead to more distance and isolation. 'Technology is neutral'. The third possible view of technology is that it is neutral and 'just a tool'. According to this viewpoint, the positive or negative effects of technology are due not so much to the technical artefact itself as to the intentions of the users and the context within which it is used. For example, a syringe can be used to give a life-saving or a fatal injection, which might be desirable in one context but not in another. The script approach emphasises the inherent 'activity' of the technology. Built-in values and norms The script approach makes clear that values and norms are embedded in technology. They are, as it were, 'built in' to the device (Berg en Mol 2001). Along with legal and instrumental rules, technology also contains notions of a good life. The script approach allows these ethical implications of particular designs to be considered at an early stage. Of course, the values and norms contained in technology are themselves open to debate. Let us consider a few examples of home care technology. Invisibility versus ease of use Medical devices such as infusion pumps and the interfaces of monitors and alarm equipment are becoming smaller all the time. The advantage of this miniaturisation is that the technology is less obviously present. Everything seems the same as it used to be, and the patient is less clearly confronted with various types of equipment. This has the benefit of constituting less of an intrusion into private life. This is an important plus when it comes to technology that is to be used in someone's home. When equipment is less visible, this means that communication does not necessarily pass through or via the equipment, and this is beneficial in terms of human contact. The downside, however, is that small operating panels are 2004 Report on ethics and health _ RVZ 8

9 more difficult to read and small buttons are harder to operate. This can affect the independence of patients and informal carers. So we see that the desire for less intrusive technology is in then conflict with the patient's wish to remain independent and lead as normal as possible a life. 'Foolproof versus 'tinkering Technology in the home will largely be operated by people with little knowledge and experience of it. There is a strong tendency to design technology so that nothing can go wrong with it, as safety is an important principle. This means designing technology with as few adjustable functions and moving parts as possible. However, as a result of this it is difficult to adjust the equipment to reflect the end user's individual wishes and difficulties. The attempt to increase safety then stands in the way of the patient's self-determination and control over the situation. Multi-functionality versus ease of use Many different types of infusion pumps are available for administering drugs. Some pumps are suitable for only one type of treatment, such as pain control, while others are more versatile. However, multi-functional pumps are larger, heavier and more expensive. This makes them more difficult to use and restricts patient mobility. The conflict between multi-functionality and ease of use also applies to monitors (Kastermans 2002). The question of how much we are willing to spend on the principles of mobility and freedom of movement also arises here. Anticipating the consequences of home care technology Care situations change under the influence of technological interventions. Devices sometimes have unforeseen consequences on the way people interact and the way working and care processes are structured. and mobile phones are obvious examples. Looking closely at developments and their ethical dilemmas at an early stage may allow potentially undesirable changes to be anticipated. Some patients may find that going to the thrombosis clinic has unforeseen functions for them. For instance, it can put some structure into their day or give them the opportunity to come into contact with fellow-sufferers. These implicit functions will be lost if this form of care is replaced by home care technology. Transferring care to the domestic setting with the help of technology leads to changes in the roles, tasks, responsibilities and mutual relationships of those involved. The organisational setting and funding also undergo change. Therefore, the ethical analysis must look not only at the technology itself but also at the care arrangements within which it operates. Which forms of care are made possible by technology, and which are made more difficult? What organisational, financial and individual requirements are to be met if the technology is to properly operate? These kinds of questions also need to be considered in an anticipative ethical review. Conclusion The script approach offers a view of technology that is also useful for ethical considerations. Taking this approach means, among other things, that account has to be taken of 'built-in norms' and desirable and undesirable effects when new home care technology is being designed and implemented. This has ethical relevance as many important principles (such as safety, independence and freedom of choice) are at stake. The issue of which values and norms should be expressed or encouraged via technology is also important from an ethical point of view Report on ethics and health _ RVZ 9

10 4. Changes to the domestic situation 'Bringing illness home' One of the greatest changes in the domestic situation is that illness takes on a structural place in the domestic situation. What this might mean for people - in the sense of regained freedom and new feelings of competence, but also greater responsibility, fresh uncertainty and 'bringing illness home' - is clear if we look at one example. Peter is a child with cystic fibrosis. He is twelve years old and regularly suffers serious inflammation of the respiratory tract, which is a direct consequence of his condition. Special antibiotics that have to be administered intravenously (by infusion) are needed to treat these inflammations. In the past, this has meant that Peter regularly had to spend long periods in hospital, away from his home, school and friends. And for his parents these times involved daily trips between the home and the hospital, always worrying about questions like 'who is going to look after the other children?' and 'what about dinner tonight?'. But when Peter's paediatric pulmonary specialist told his parents about the possibility of home treatment, they weren't immediately keen. Peter's mother said, "It came as a complete surprise to us, because we had never heard of anything like this before. At first we had reservations, as we felt that in this way the whole issue of illness would come into the home. But we continued to think about it, discussed it with the consultant and she made it quite clear that it wasn't an indefinite commitment. If at a particular time the family situation meant that we couldn't take on home care, Peter would stay in hospital. And we would always have around the clock telephone access to someone at the hospital or from the home nursing service. It was clear that we would not be left to cope alone, and that nothing could actually go wrong." They were given extensive instructions beforehand, but the first time was quite tense. Peter left hospital with a drip in his arm and a portable infusion pump around his waist. Peter's mother said, "We went into town together and we were quite nervous. Imagine if the device set off an alarm". But this uncertainty did not last for long. Both Peter and his parents soon got used to the situation. The first time he wore his infusion pump he took all the kit to school and demonstrated it, with his father. Since then, his classmates know that they sometimes can't be too rough when they play with Peter. Peter said that the teacher thought it was all quite complicated, but he himself knows exactly what to do and who to call if something goes wrong with the drip or the pump. So he has considerable independence. The antibiotic cartridges only need to be changed once a day, and this can usually be done at home. Looking back, Peter's mother notices how much can change in such a short time. "It's all so simple now. When Peter is wearing his pump and it sounds an alarm, that is often because the infusion tube has got kinked. He just runs his fingers along it to straighten it out, and that usually solves the problem. It's fantastic for our whole family that we can use this opportunity and don't have to cope any more with endless hospital admissions." (KITTZ 1992). Autonomy and privacy The home situation changes dramatically when someone receives long-term (labour) intensive care at home to hospital standards ('big sister') or lives in a high-tech environment in which all his or her activities are controlled and monitored by pre-set computer programs, cameras and sensors ('big brother'). One important change relates to the high frequency of visits by healthcare providers. They often have to attend to set up and adjust, check and maintain equipment and to provide additional care. District nurses, GPs, home care nurses, technical team nurses, service engineers, physiotherapists and occupational therapists can all be regular visitors. The involvement of many healthcare providers (not always the same individuals) entering the home 2004 Report on ethics and health _ RVZ 10

11 at various times every day undermines the feeling of control over one's own life, and can also be detrimental to privacy. And another important practical issue arises with regard to bed-bound patients or patients with limited mobility: how does the healthcare provider gain access to the home? This problem, which touches directly on patient privacy, has not yet been resolved. TNO/PG (Dutch Association for Applied Scientific Research / Prevention and Healthcare) is currently conducting a study into this 'key problem in home care' as part of the Home Care Technology programme run by ZonMw (Netherlands Organisation for Health Research and Development) (www.zonmw.nl). Transferring tasks, relationships and responsibilities Home care technology creates new tasks and leads to a reassignment of responsibilities between professional healthcare providers, informal carers, patients and the technology. These issues are touched on in the Health Council's report (Chapter 4, 2004), but we also wish to address them here. When Utrecht University Medical Centre discharges patients to return home with a drip, the hospital asks the patient's health insurance company for permission to do so. The consultant treating the patient discusses the transfer of responsibility with the patient's GP. The GP then signs a requisition form for district nursing care, which will provide the actual care. The hospital contacts the equipment supplier under contract to the relevant insurance provider to arrange for the supply of the required technology (Van Boxtel, oral report, 2 April 2004). Professionals Some tasks are reassigned from one medical professional to another. For example, consultants may transfer responsibility to GPs, as in the case of infusion technology used in the home. However, it is precisely because most GPs are not often called on to deal with this kind of scenario that the question arises of whether they have the necessary resources to cope with a catastrophe. Clear agreements are needed between consultants and GPs if such arrangements are going to work. After all, GPs must be willing and able to accept responsibility for patients at home. GPs and consultants also transfer tasks to (district) nurses who perform medical interventions and provide care to patients at home. The Professions in Individual Healthcare Act regulates how (restricted) interventions can be delegated to nurses. No distinction is drawn between intramural care and home care. Examples of restricted interventions that can be transferred that are relevant to home care technology include injection of medication/vaccines, catheterisation, fitting drips and probes, removing drains, carrying out (venous) punctures and removing epidural catheters. Skilled and experienced nurses can be asked by physicians to carry out activities related to the physician's diagnostic and therapeutic activities. Examples of medical care at home include (performing and) assessing ECGs, deciding on a wound treatment policy, and interpreting lab results. Informal carers Home care technology also imposes new and different responsibilities on informal carers. Sophisticated home care technology (such as artificial ventilation at home or nocturnal dialysis) depends on the presence of informal carers, who are therefore indispensable Report on ethics and health _ RVZ 11

12 But being indispensable can be a heavy burden, and has consequences for the self-determination of informal carers. The load can weigh heavily if care has to be constantly provided, over an extended period, or if it is required at unpredictable times. This is even more so when the informal carer also suffers from a chronic condition or impaired function. Indispensability poses less of a problem in other situations, for example, in the case of terminal palliative care or where home care technology avoids long-term institutional care for a child. The actual tasks carried out by informal carers can also change as a consequence of sophisticated home care technology. They are, for example, required to carry out medical and technical tasks such as operating and maintaining equipment. Responsibility and liability issues are not always clearly defined here. Blood transfusion at home is as yet of limited availability. Improvements to blood products mean that it is now safer than before. In Utrecht, some patients who have already undergone multiple blood transfusions and who find travelling to hospital a drain on their limited energy reserves can now receive erythrocyte concentration transfusion at home. Blood transfusion takes about three to four hours. A hospital nurse sets up the treatment. The infusion can be removed by various people. The nurse might come back to do it, the GP might do it, or an experienced informal carer is sometimes able to handle this procedure. (Van Boxtel, oral report, 2 April 2004). Patients The tasks, roles and responsibilities of patients also change, particularly when they are involved in self-monitoring at home. The desire for this form of care, which gives patients more control over and responsibility for their own care, is after all one of the driving forces behind the development of home care technology. Patients need to develop new skills to measure their blood glucose, blood clotting values, or the heart sounds of their unborn baby. This gives patients new opportunities and new responsibilities. Technology Finally, more responsibilities are devolved onto the technology. All forms of remote care involve the replacement of clinical and nursing observations by sensor-generated readings and data reported by patients. Blood pressure figures measured in the GP's surgery or the outpatient department do not always give an accurate picture thanks to the 'white coat effect'. Research has been carried out in Maastricht to find out whether asking patients to measure their blood pressure using an electronic blood pressure meter is a suitable alternative. GPs were initially sceptical as to the clinical viability of blood pressure figures reported by patients. But their confidence has increased now that modern electronic blood pressure meters have become available, which are capable of storing up to 500 readings along with the time of measurement in their memory. Patients are less able to fudge the figures. The same applies to electronic pill-boxes used in this project to monitor therapy compliance. The boxes record whether and how often a compartment is opened, but cannot indicate whether the patient actually swallows the pill (Verberk, oral report, 11 March 2004). Ethical issues The domestic situation changes as a result of the arrival of home care technology, and so do the tasks, relationships and responsibilities of those involved. This also raises ethical issues. Does it not constitute too great an intrusion into the domestic atmosphere, the feeling of being 'at home', for patients and other members of their household? Does home care technology help give patients more independence and control over their own lives, or does it in fact prevent this? Do healthcare providers 2004 Report on ethics and health _ RVZ 12

13 under whose responsibility home care technology is being used have sufficient resources? Is patients' privacy sufficiently protected when monitoring tasks are delegated to machines and when more healthcare providers enter the home? One important question is who decides whether or not to start (and continue) using home care technology, and who decides exactly how care will be provided. Patients and their carers should have a strong voice in this decision. The patient's ability to retain control over his or her own life and domestic situation plays a key part in this, as does the issue of the burden on carers and other members of the household. We can draw a distinction here between long-term care, postoperative monitoring, and terminal palliative care. This is because the impact of using home care technology on the domestic situation varies according to the length of time that it is in use. 5. Changes to care arrangements Technical objects are, of course, essential, but they are by no means the only factor required to enable home care technology ('allowing patients to remain at home for as long as possible and to return home from hospital as quickly as possible'). An effective home care arrangement depends on many other things in addition to equipment, such as training programmes, protocols, maintenance, quality control, and an information and communication structure. In the following section, we will first look at how this is done and by whom. We then turn to the ethical aspects. Providers of home care technology Home care technology is an innovative initiative not centred on any particular individual institution, and so there is not one single obvious provider. In practice, this form of care is arranged in a variety of ways, including on a project basis, by multidisciplinary teams, foundations, private firms, or administrative alliances set up between individual healthcare facilities (ranging from holdings to mergers). In addition, it is often initially unclear when new home care arrangements are set up how all the necessary tasks and functions will be organised and how responsibilities will be assigned. These issues need to be clarified. Various arrangements are possible. Home care technology set up by the hospital Hospitals are one of the providers. This is significant, for example, in arrangements such as home dialysis offered by dialysis centres. These are specialist hospitals with an organisational infrastructure comparable to other forms of hospital care. Dialysis centres own the dialysis equipment and water purifiers, and lend them to patients at home. Both devices are similar in size to washing machines. Patients are responsible for making sure that they have enough dialysis material at home and for ordering fresh supplies. They send blood and water samples for checking by normal mail in special packaging. Patients on diurnal dialysis can, if they so desire, have a nurse working for the dialysis centre come to call. Patients on nocturnal dialysis have their dialysis equipment switched on and off by their carer. This task is easy to master, and makes this form of care feasible as a result of dialysis centre workers no longer having to travel throughout the region late at night and early in the morning to give home visits. A monitoring centre is also open 24 hours a day to answer questions and deal with calamities (www.dianet.nl). Home care technology organised by transmural multidisciplinary teams Home care technology is also offered by transmural multidisciplinary teams. To take the example of intravenous infusion of drugs at home, this form of home care relies on a good 2004 Report on ethics and health _ RVZ 13

14 working relationship between the hospital, home care service, pharmacist and GP. The same applies to blood transfusion at home and the use of bladder catheters and probes under the supervision of district nurses. This way of arranging home care technology does not fit easily into the current funding and insurance system (see Section 6), and so causes considerable bureaucratic headaches. Most hospitals have assigned a specialist transmural or liaison nurse to deal with home care arrangements for patients needing infusion technology. A recent survey found that there are at present about fifty Medical Technology Teams working throughout the Netherlands, operating from home care organisations or hospitals. Many of the MTT nurses were trained by Utrecht University Medical Centre, and so increasingly follow the same protocols. This is important. In the past, nurses worked to widely varying standards (for example, frequency of injection and use of sterile gloves). This, in turn, can worry patients. One important factor in infusion technology is who decides on the choice of the pump. Medical insurance providers have contracts with service providers who manage and maintain the pumps. This means that there might be as many types of pump in use in any particular hospital district as there are medical insurance providers. Each pump has a different display unit and different design features. One pump measures infusion fluid in millilitres, while another measures it in millimetres. Some pumps show the memory for that day when you press a button, while another shows the memory for the entire past period. The peripherals are also different. This makes working with infusion technology complicated for nurses. Home care organisations therefore need to spend more time and money keeping nurses' skills up to date and guaranteeing safety. The healthcare sector has always tried to resolve problems like this through the way care is organised (training, consultation and agreed working practices). But if we consider the script approach, we find that solutions can also be found in the design features of the involved equipment. Standardising the display units of infusion pumps would be a good start. Home care technology offered by new players in the sector As a result of deregulation private companies see opportunities in the home care technology market. For example, suppliers of stoma aids and oxygen for home use are hiring technicians and specialist nurses. They also enter into contracts with medical insurance providers, not only for supplying equipment but also for adjusting it to patients' requirements and for providing support. They are in this way entering the area of patient care. Monitoring is an important activity in this context. Thus, Dräger Home Care Technologies, a major manufacturer of various devices including CPAP equipment (a type of artificial ventilation equipment) for people with sleep apnoea, now offers a sleep monitoring product. The company sees developing services for patients in combination with designing and producing equipment as an attractive strategy. New equipment is simple to copy, and manufacturing can quickly be transferred to low-wagecost countries. The company can generate added value by supplying 'solutions' for patients in need of sleep monitoring. The crux of this innovation is not so much the equipment and the related software as its rational integration into an existing process of care. A similar situation arises in the context of monitoring patients with heart failure. IMA Services and Philips Medical Systems have, for instance, developed self-measuring equipment and monitors for home use (for parameters including ECG, blood pressure, and blood oxygen saturation) in combination with service provision by a monitoring centre. These firms offer internal training to the call centre employees and quality assurance by an independent body. GPs continue to act as the gatekeepers, with responsibility for referral and determining indications. Heart failure patients are 'monitored' in this way in Germany, Switzerland and Italy. However, companies need a certain number 2004 Report on ethics and health _ RVZ 14

15 of patients for such systems to be profitable. A new category of patients is therefore being created, called the 'worried well'. These are people with risk factors (such as high blood pressure, high cholesterol or a familial predisposition). They need reassurance and pay a subscription for the service (Mampuya and Westerreicher 2002). Ethical issues The introduction of new care arrangements, new multidisciplinary teams and the arrival of new groups in the sector raises new ethical issues. Patient selection and privacy It would appear at first sight that specialist firms would be well placed to streamline care and so offer the continuity that is so important to patients. However, one potential ethical risk involves 'creaming and dumping'. Commercial providers of home care technology could select the 'easiest' patients, for example those who hardly ever call the call centre, leaving the 'difficult' and more expensive patients for the public sector to deal with. We also need to consider from an ethical point of view whether the medicalisation of people who do not have a medical problem (the 'worried well') is a desirable trend. Access to medical records is another potential problem. Privacy requires that access be restricted to the practitioner(s) and the patient. However, it might be important for call centres or service providers, for instance, to have access to some types of data for safety or quality of care reasons. Other important ethical aspects related to the organisation of home care technology concern the safety and quality of care, availability, and equality of access. We will deal with these aspects below. Quality and safety It is particularly important to focus on safety and quality of care as a patient moves from his or her current form of care towards an arrangement that involves home care technology. Problems can arise at this time, for example, because the protocols and agreements, instructions for users, recording system and quality assurance have not yet been clarified. A bottleneck analysis carried out as part of a ZonMw project on nebulisers used in the home found, among other things, a lack of coordination and agreement, some cases of excessively complicated procedures, inadequate information for users, and a lack of experience, skills and knowledge on the part of medical professionals (Quak 2001). Few investigations have been carried out to date into the bottlenecks and solutions to such problems that arise in the transitional phase. Further research should be carried out in view of the potential problems relating to safety and quality of care for patients as they transfer to a home care technology based package of care. Availability of home care technology Home care technology can offer considerable benefits to patients (such as the ability to stay at home for longer, more independence and greater freedom of movement), but its availability is still often limited. One of the reasons for this is what is known as the problem of scale. Home care service providers say that the small number of patients stands in the way of them offering, for example, home infusion technology. Setting up a specialist team to deal with these kinds of interventions is rarely profitable, and it is hard to keep skills and expertise up to date (Van 2004 Report on ethics and health _ RVZ 15

16 Poppel 2000). A pilot project offering home phototherapy to children with neonatal jaundice had to be terminated due to insufficient patient numbers. The problem of scale is difficult to deal with. So long as home care technology continues to be used on a small scale, this form of care will remain relatively unknown to potential referrers. They have little experience with it, do not have the opportunity to gain confidence in it, and referring patients does not become common practice. Consequently, patient numbers remain low and it is difficult for suppliers of home care technology to continue operating. Launching forms of care that involve home care technology also requires considerable investment. Starting up in a small way with round-the-clock monitoring is not possible, because qualified staff have to always be on hand. It can be possible to gain experience with various forms of home care technology via regional trial projects. Positive scale effects are to be expected if referrers, service providers and end users can gain more intensive experience. Involving patient organisations should also have a positive impact on the availability of home care technology. For example, the national CF patient association played a key role in a project carried out in Groningen into home treatment of patients with cystic fibrosis. After the success of the first home treatments, this information was quickly spread via the patient association's channels. Patients from all over the country got in touch or telephoned to ask for information, and so this new form of care spread more easily (Thie 2002). Equal access As well as some still limited availability, unequal access is another problem. There are currently regional differences as to whether patients can make use of home care technology that they desire. This is to some extent unavoidable due to differences in infrastructure and circumstances. For example, it would not necessarily be appropriate to offer sophisticated technology in relatively thinly populated parts of the Netherlands in cases where there needs to be quick response to alarms. And some upper-storey flats in cities are not suitable for installing a tilting bed and other accessories needed to nurse someone at home. Differences of this kind can create a division between people who have access to home care technology and people who do not. Furthermore, the use of home care technology has not progressed to the same extent in all regions. Innovations usually spread gradually, with innovators being followed by early adopters, and the late majority then coming to accept innovations with only the laggards remaining out of the loop (Rogers 1995). However, not all differences can be explained or justified. The Rivas Zorggroep in Gorinchem (a joint project involving local hospitals, home care services and GPs) was a pioneer in the use of home care technology in the Netherlands. A project funded by the Ministry of Health, Welfare and Sport was carried out between 1991 and 1993 looking at six different types of home care technology (ambulant blood pressure monitoring, oximetry, cardiomonitoring, pregnancy monitoring, traction equipment used at home, and intravenous therapy). The project examined whether it was possible to transfer hospital technology to a domestic setting. It was a success, and all six technologies are currently deployed in the region as part of the normal product range. Despite the positive experiences of patients and care providers, the availability of tried and tested protocols and suitable equipment, few other regions have followed this example (Van Vlaanderen 2002) Report on ethics and health _ RVZ 16

17 Conclusion Ethical problems in the organisation of home care technology relate to limited availability of, and unequal access to, home care technology. The quality of care and safety may be put at risk as a result of the lack of skills, poor organisation and unclear assignment of responsibilities. This is particularly true in the transition phase from one care arrangement to another. The arrival of new players (specialist firms, monitoring centres etc.) also gives rise to new questions that relate, for example, to patient privacy and the confidentiality of medical data. Generating demand for certain services for commercial reasons can constitute medicalisation, and can therefore be undesirable. 6. Changes in funding 2 Transferring technology to the domestic setting also leads to changes and bottlenecks in a financial sense. These can also have ethical consequences in the form of limited or unequal access, less suitable care, and restrictions on patient choice. This sction goes into more detail on this issue. Current funding structure Varying funding systems Home care technology is currently funded from various sources, both from the first category (AWBZ [General Exceptional Medical Costs Act]), and from the second and third categories (ZFW [Statutory Medical Insurance Act] and top-up insurance). The WVG (Disability Provision Act), implemented by local authorities, also applies to people wanting medical appliances and alterations to the home. The way a particular technology is paid for still often depends on where it is used. Funding from, and contributions to, each category are separately regulated. This leads to financial partitions and makes the use of home care technology a complicated matter. Heart monitoring is one example of this. Heart monitoring carried out at a hospital is paid for from the hospital's budget, but the same does not necessarily apply to heart monitoring carried out at home. The consultant who examines the film of the heart's activity sent to the hospital is paid from the hospital's budget, but the GP who supports the patient at home is not. District nursing is paid for under the AWBZ, with patients making a contribution to this. The heart monitor itself is paid for from the ZFW. But medical insurance companies can argue that they have already paid for ten heart monitors at the hospital, and that this number covers the requirements of their policyholders in that area. They will then not pay for extra monitors at home. One solution to funding of home care technology is often found in special arrangements such as the Room for Initiative scheme (previously known as the Flexicare scheme). These arrangements are intended to allow medical insurance companies and healthcare providers (hospitals and home care organisations) to reach agreements on care that crosses the boundaries between different categories. However, these special arrangements are quite tricky to administer, and not all medical insurance companies are interested in new initiatives. Differences in payments The Medical Devices Schedule operated by the CVZ (Health Care Insurance Board) is an important part of the ZFW as far as home care technology is concerned. This schedule is a 2 We thank Ms. J Pleiter, ZonMw, for her contribution to this Section Report on ethics and health _ RVZ 17

18 restricted list of devices that is used as a basis for payment for devices needed by people with statutory health insurance. Most private health insurance companies also use this list. The current Medical Devices Schedule deals with claims for items including portable external infusion pumps (including the required fittings, disinfectants, connection tubes and needles), oxygen equipment and oxygen concentrators along with their accessories, and enteral/parenteral nutrition systems for home use. However, differences in the interpretation of the list by insurance companies sometimes leads to inequality between patients. For example, some private health insurance companies require patients to contribute to the costs of syringes, sterile gloves, gauze dressings etc., while other companies see these items as part of the device. No payment is usually made for electricity consumption, batteries or chargers. Some types of home care technology have to be used in combination with medication, such as chambers to which some kinds of nebulisers and insulin pens have to be attached. There is often some discussion as to whether combinations of drugs and equipment like these should be included in the package, as it is unclear whether the product should be classified under the Medical Devices Schedule or the Pharmaceutical Schedule. New modes of funding Both the first and second categories are seeing a change in the way care is funded: away from the system where it was paid for from the budget of a healthcare facility towards a system where it is paid for on the basis of individual products or functions, independent of the healthcare facility. Medical products and functions are no longer connected to a healthcare facility, but can be obtained from various providers. The modernisation of the AWBZ has led to a new system in which seven functions (domestic care, personal care, nursing, ADL support, behavioural support, treatment and accommodation for care providers in the patient's home) are paid for on the basis of units of time. These care functions can be purchased from a variety of providers or institutions. Lifting the location restrictions on funding could have a positive impact on home care technology. In the second category, the budget system is replaced by product-based funding. A project for hospitals has been launched, involving the creation of Diagnosis/Treatment Combinations (DTCs) with a tariff of prices. As from 1 July 2004, all hospitals will register the first 17 DTCs according to the new system. A comparable approach will be drawn up for other sectors, for example defining GP support in the form of products similar to DTCs. Devices will in future also be indicated in the light of particular functions, and they will also be included in DTCs. The precise consequences for home care technology are not yet clear. Under the new system, some care currently provided under the AWBZ will be included in, or transferred to, general medical insurance. This is relevant to home care technology insofar as home care aimed at restoring health will be transferred. Another part of care currently provided under the AWBZ will be transferred to the Social Support Act, which is administered locally. This Act covers domestic care and services such as alarm systems, meals on wheels, and day centres that local authorities will now offer. It is expected that local authorities will be better placed to offer the services that meet the needs of their citizens. They will need to acquire the necessary expertise and develop procedures to carry out this new task. However, the implementation of the WVG has shown that 2004 Report on ethics and health _ RVZ 18

19 this does not always lead to universal satisfaction. Furthermore, local authorities do not all have the same budgetary resources, which means that they will make different choices when it comes to offering care products. The Ministry for Health, Welfare and Sport currently plans to hold off from implementing the new system until 2006, at the earliest. In the meantime, the financial partitions in the funding of home care technology are likely to remain more or less relevant. Ethical issues Limitations in access to suitable care Funding partitions discourage the transfer of care from hospital to the home setting, even though this transfer might often be beneficial to the patient. Furthermore, it is in the interests of private medical insurance firms that the costs of home care technology (equipment, staff, organisational costs) are borne as far as possible by the AWBZ or the hospital budget. After all, the hospital budget is the outcome of negotiations between the hospital and the medical insurance company, which therefore sees it as 'money that has already been spent'. However, the costs of home care technology are 'an extra expense'. This means that medical insurance firms can be reluctant to authorise its use. This does not encourage the use of home care technology (Van Boxtel, oral report, 2 April 2004). The financial incentives generated by the present system do not always coincide with the principles of good-quality patient care and appropriate medical care in general. The government and medical insurance companies are trying to shorten in-patient times and boost hospital productivity by using budgetary methods. In relative terms, day admissions are more financially viable for hospitals than in-patient admissions. This budgetary system does not encourage the use of home care technology in practice. It is now more financially attractive for hospitals to have patients come to the hospital for day treatment for procedures such as blood transfusion or pregnancy monitoring (Van Boxtel, oral report, 2 April 2004). Freedom of choice Funding is not available for all types of home care technology for which patients might be suitable and that they might want to use. The Medical Devices Schedule is limitative, and does not cover all forms of technology. Since 1 January 2002, statutory insurance funds have been able to decide for themselves how many devices, and what devices, they are willing to supply. This means that patients do not always have the ability to decide whether or not they want to use home care technology. Another problem is that patients receiving care under the AWBZ have to pay a contribution (income-related, up to per hour), which is not the case for hospital care. A patient being treated at home and requiring a district nurse pays for this, while a patient receiving exactly the same treatment in a hospital or a specialist treatment centre does not have to pay. This restricts patient choice and the use of home care technology. Medical insurance firms take out purchase contracts with suppliers and offer preferred packages in order to keep the costs of home care technology down. For example, medical insurance firms will decide what kind of CPAP equipment they will pay for and how many oxygen machines and oxygen concentrators they will make available to their policyholders. The result of this is that the device chosen does not always meet a patient's specific needs and wishes. This can cause problems, particularly for patients with chronic conditions Report on ethics and health _ RVZ 19

20 Inequality As insurance firms interpret the Medical Devices Schedule in different ways and can have different policies as regards the numbers and types of devices that they pay for, inequalities exist between patients insured with different medical insurance firms. This is not, though, necessarily a problem. If patients are well informed and can opt for an insurance provider that offers them the best deal (including home care technology options), this can also be a positive incentive. Market forces should then more closely match the supply of and demand for care. The WVG is implemented by local authorities, and there are currently inequalities in terms of budgets, indication criteria and the nature of the products and services offered. In future, they will also be responsible for services under the Social Support Act. This might lead to unequal rights, as is the case with the WVG at present. On the other hand, it might also help to match supply and demand more closely at a local level. When we consider funding by insurance firms and local authorities, we must be careful to weigh up the possible advantages of a better match between supply and demand against the risk of inequality (of rights) and an unjustifiable distribution of care and of care technology. Conclusion The main ethical problems arising from the current funding system are the limits on access to home care technology that are sometimes caused by financial partitions and bureaucracy. This can result in patients failing to receive the most appropriate form of care. For example, a patient might be suitable for discharge if he has an infusion pump, but neither the insurance firm nor the hospital is willing to pay for it. This can even happen if the overall costs would eventually be lower and the patient himself wants to go home. This threatens the patient's freedom to choose whether or not he wants to make use of home care technology. Finally, patients in different local authorities or covered by different insurance companies may face inequality. 7. Conclusions and recommendations Home care technology is evolving, and has led to various shifts and changes in care. This report has considered the ethical implications of this in a specific context. A number of conclusions and suggestions for future policy are set out below. Interaction between ethics and technology More attention should be paid to ensuring that ethics keeps pace with technological progress. Following the script approach, this means that implicit and explicit views on quality of life should play a role in the design of technology. Normative considerations and choices would then be reflected in the appearance of technology. Designers of home care technology and training courses (such as the Health Care Technology course at Arnhem College, Nijmegen, the Human Technology course in Groningen and the Biomedical Technology course in Twente) will have to pay heed to this. Further investigation is also needed into ethical issues surrounding the use of technology in everyday practice, and methodologies for this investigation need to be developed (see also the report published by the RGO [Advisory Council on Health Research] in 2002). Research is needed not only in the form of health technology assessment, but also into the significance of old and new forms of care to patients and healthcare providers. Availability of home care technology Home care technology offers opportunities from the provision of high-quality health care that meets patients' wishes. It can increase patients' independence and autonomy, and improve 2004 Report on ethics and health _ RVZ 20

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