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  • ETH1: What are the known and estimated benefits and harms for patients when implementing or not implementing STS?
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What are the known and estimated benefits and harms for patients when implementing or not implementing STS?

Authors: Plamen Dimitrov, Gottfried Endel, Anelia Koteva

Internal reviewers: Pseudo293 Pseudo293

New Ethical Challenges Posed by the Intersection of Medicine, Telecommunications and Home

Although met with initial enthusiasm for their potential to bring a number of improvements and positive changes in the way healthcare is provided, teletechnology-related opportunities should not be overemphasized, especially in the context of scarce empirical material. As will be discussed later in the text, on the agenda stand many ethical challenges, with the border between the benefits and harms associated with telemedicine remaining vague and fluid rather than sharply defined. This high ambivalence, interrelation and two-way impact hamper them from being placed in a dichotomous category as either benefits or  harms, but for the purposes of the present paper such a categorization will be made.

In the literature the benefits associated with the provision of medical/health services at a distance through the use of ICT are widely recognized , where the benefits can be viewed from several points: 1.) for patients; 2.) for health personnel and healthcare providers; 3.) for the families and relatives of patients and 4.) for society as a whole.

As far as the focus is on the positive and negative impact for patients solely, here an attempt will be made to present both sides.

 

Anticipated Benefits and Positive Effects for Patients-Recipients of Telecare:

In general, the expected effects are oriented in the direction of improving patients’ health status and quality of life through:

  1. Overcoming/Minimizing temporal and geographical boundaries – teletechnologies  allow transfer of synchronized real-time information, thus making it possible to deliver the right care at the right time and in the right place for an individual patient (especially useful in emergency situations);
  2. Applicability in remote, hardly accessible and isolated regions; reducing transportation costs to the hospital and avoiding difficult and inconvenient travelling for patients in serious condition or those living in very remote areas. On the other hand, the decrease in travelling costs and time may reciprocally increase their time spent on pleasant daily activities, hobbies, household chores, etc.;
  3. Ensuring equal access to medical care for patients living in isolated areas;
  4. Reducing the risk of complications; decreasing rehospitalization and repeated invasive procedures or at least achieving prolonged remission periods;
  5. Increasing patients’ confidence/tranquility in obtaining an adequate advice and/or qualified care; the remote monitoring system may serve as a reminder of getting certain prescribed medications by controlling their intake and the one of regular meals (for lonely patients or those exhibiting cognitive problems);
  6. Avoiding the “white coat syndrome”;
  7. Potential improvement in verbal sharing on the part of anxious or easily disturbed patients, who generally tend to avoid face-to-face communication;
  8. Highly promising sector for improved patient access to services and information as well as expanding the scope of services provided;
  9. Facilitating the management, storage and transmission of health information;
  10. Opportunities for patients to be treated in the comfort of their own home combined with lower costs as a result of the replacement of institutional care with homecare;
  11. Opportunities for patients, their families and friends to access unlimited online health information and resources about certain diseases, potential therapies and specific healthcare providers (partially applicable in the case of mobile phones/smartphones). In the majority of cases, patients may get access to the same medical information that healthcare providers normally are entitled to. Although too much medical information that may be hard to understand by a layman could be as dangerous as a total lack of information, it may also be true that most verified and accurately presented information could often produce better informed patients and families, providing more power in their hands as to the selection of specific healthcare professionals and the decision-making process – this is the result of the ongoing changes in recent years, thanks to the mass media and education, demystification of medical practices and adoption of liberal democracy values ​​and market culture, the corollary of which is the growing desire of patients for more control over their own health together with the recognition of their active role. Due to the process of “importing” medical culture from clinical into home environment, with an increasing number of medical procedures being carried out in the homes of patients and their families, thus leading to a close acquaintance and better understanding of medical technology and procedures, it may be quite unlikely to expect that patients would remain just passive recipients of care;
  12. The culture of modernity as well as the growing share of noncommunicable diseases (NCDs) have led to transition from paternalism towards greater equality and autonomy of patients, indicative of which are the desire to control one’s own health and daily schedule, combined with a growing trend of empowerment and “self-care”, assuming more personal health responsibilities for the patient and diminishing the role of the physician by placing doctor’s functions as secondary, supporting;
  13. Shifting health services from previously primarily clinical to domestic environment may minimize the intrusion of outsiders into the house. Therefore, remote consultations are of key significance to the maintenance of the physical privacy and integrity over the non-public and intimate sphere that home implies, thus reducing undesired penetration of healthcare professionals within its boundaries;
  14. Avoiding the depressing clinical atmosphere that normally makes patients feel helpless in managing their condition;
  15. Communication with the patient through a variety of means: 1.) telephone: highly effective communication tool allowing flexibility and enabling both sides to keep one another mutually cognizant of therapeutic advances and complications. To a certain extent telephone may replace unnecessary, unwanted and expensive clinical visits. The phone could also be an excellent instrument in maintaining empathy by conveying the emotional nuances in the tone of voice and an adequate tool for articulating time-sensitive information crucial to the health of home patients; 2.) online groups for mutual support and medical websites: their value is in providing the chronically ill and their family caregivers with places for virtual meetings for sharing personal experiences, information and mutual support. By providing psychosocial support online groups have the potential to reduce social isolation, improve adherence to the therapy as well as reduce costs as a result of the increased welfare of persons (applicable in the case of smartphones);
  16. Computerized patient records: its advantages are related to the opportunity for home patients to view, modify, correct their file and have a personal copy of it (applicable to the use of smartphones);
  17. Structured telephone support contributes in preventing the trend of leaving elderly parents in nursing homes through the reduction of fear and anxiety of family caregivers and allowing the elderly to remain in the comfort of their own home, thereby reducing the costs associated with institutional care.

 

Expected Negative Implications, Inconveniencies and Harms to Patients-Recipients of Telecare:

  1. Telemedicine poses the risk of dehumanizing medical profession through the modification of the physician-patient relationship and by weakening the preliminarily built mutual trust and empathy, shifting all these at the background while undermining the importance of the patient individual approach at the same time. The fear is that the machines will create a cold and impersonal abyss between the clinician  and the patient, with the doctor simply being seen as a mechanic repairing the human body insofar as he/she treats the disease itself but not the person. Here the conflict between medicine as science and medicine as an art is clearly manifested. A view of the human should be adopted that is not fragmented but calls for more holism and comprehensiveness. In the context of electronic environment, personal interaction between both parties in the relationship is minimized, with the interaction being reduced to an abstract and digitized patient data set. Main drawbacks are the undervalued affective aspects of the bilateral relationship where, instead, the role of scientific facts is favorized and doctors are perceived as only technicians responsible for the diagnosis and therapeutic options; although the verbal element in the communication regarding the choice and implementation of a structured telephone support is not completely lost, a serious disadvantage may pertain to healthcare taken not by the clinician-therapist, to whom the patient is accustomed and has built a relationship of trust but by a completely unknown healthcare staff – most frequently an unfamiliar nurse charged with the duty to conduct the telephone interviews;
  2. The association between the quality of clinical communication and positive health outcomes should not be underestimated. The more cumbersome and insufficient communication is (which is more or less true for the structured form that healthcare is provided in), the less likely patients are to be improved;
  3. The prevalence of information over humans and their relations may prove problematic in ethical terms, particularly in the context of telemedicine, where empathy is less valued compared to timely and accurate health service;
  4. Disadvantages of some of the communication tools: 1.) telephone: highly vulnerable as far as unauthorized third parties may intercept unprotected information that is being transmitted through the mobile network as well as anyone having access to the healthcare provider’s account could log in, alter and answer the patient on the pretext of being an authoritative figure (applicable to mobile devices/smartphones); 2.) interactive video connection, also accompanied by some restrictions: by changing the temporal and spatial organization of movements, typical of a video picture, some non-verbal gestures, body positions and movements can be underestimated (for example: some facial expressions, subtle glances, etc.), to the extent that the gesture one produces may be transformed, distorted and received in quite a different manner by the other in the interaction. Similarly,  when communicating via landlines that do not permit a video image, some nonverbal bodily characteristics, particularly delicate facial expressions bearing relevant information, may remain hidden for both parties in the communication process and therefore undervalued;
  5. The concerns related to privacy and confidentiality of identifiable personal information will be discussed in detail in the next section; here they will be mentioned only briefly. Generally, they are concentrated around the risk of leakage of information to third parties in the process of collecting, handling, transmitting and storage of information, all mediated by mobile devices and applications, unauthorized access to personal data, security breaches, abuse of one’s official position, being the target of hacker attacks, data manipulation and destruction, technical errors, etc., resulting in diminished public confidence in the new technologies in the field of medicine. A reasonable question arises as to whether the fine membrane separating the public from the private sphere won’t be dissolved as well as won’t the overuse of medical equipment result in too great and undesirable medicalisation of the intimate space called “home”: 1.) the issue of “cookies” allowing to track users’ IP addresses when visiting certain websites and online servers installed by web developers and sponsors (applicable in the case of smartphones). This potential lack of anonymity could be especially problematic for patients suffering from socially stigmatized conditions; 2.) electronic information can be more easily accessed (including anonymously), altered, viewed, copied, disclosed or deleted in comparison with traditional paper records; 3.) at risk is the information privacy of patients since personal physiological data may leak electronically and be shared with other clinicians and researchers; 4.) it is by the malefactor’s wish that only basic information that has been consistently collected about a specific person through cookies may be sufficient to restore the victim’s full medical profile, this time bringing his/her individual characteristics; 5.) next, medical websites and online groups for mutual support also face serious problems concerning the accuracy and quality of medical information (for example: anyone can put a badge on the Internet claiming that he/she is a doctor, i.e. self-proclaim himself/herself as such) (applicable when using smartphones); 6.) even assuming that all medical information generated on medical websites and online groups for mutual support is accurate, patients and their family caregivers can easily be overwhelmed by too much medical information that they have not been trained to read and comprehend, which may be attributed to their lack of knowledge of research methodology and statistical data interpretation making it hard for them to compare the results of several medical studies (applicable to smartphones);
  6. The “One size fits all.” principle is not valid. One should abstain from giving standardized regulations and prescriptions; the approach to the patient should be individual since what may be good and beneficial for one person may be detrimental to another. Everyone has his/her own preferences and needs that have to be respected and taken into consideration by the medical personnel, with the service provided to be tailored to patients’ individual characteristics and needs. E-health may increase marginalization of groups. The “digital divide” brings additional groups to the risk of marginalization;
  7. New may not be necessarily best – both practice and time prove this. Instead of blindly believing that new is always better, one must balance the enthusiasm for the potential of telemedicine against the recognition of the need for scientific (evidence-based) verification and evaluation. Therefore, hasty adoption on the basis of only early and insufficient empirical data, whose effectiveness has been demonstrated as limited, may not be the right point;
  8. Lack of trained personnel to work with telemedical technologies; people are still to be taught, but learning takes time and enough practice. The issue of applying teletechnologies in medicine is an interdisciplinary, multi-faceted field, which requires the need of broadening the narrow knowledge of the medical staff involved in the teletechnology application. Since of crucial significance are the privacy issues, the staff is required to have expertise on legal and ethical matters, as well;
  9. A humane field as medicine claims to be must not tolerate universalization, generalization and unification. Historically, universalization has always led to depersonalization;
  10. Excessive technologization in the field of medicine implies another drawback – lowering the clinical skills of the physician insofar as the doctors rely solely on technology, thus “forgetting” how to perform a simple routine physical examination, for example. Instead of the clinician it is the technology that is in charge of conducting a patient’s check-up and setting his/her diagnosis;
  11. If fallen in the wrong hands, any tool could cause damage, which in turn necessitates the presence of detailed regulations and guidelines for the application of the new technology;
  12. In the cases, in which risk is overestimated, telemedicine can restrict the freedom of the patient that may lead to strengthening his/her social isolation. Therefore, the right balance between patient’s autonomy and ensuring his/her health protection needs to be found;
  13. Despite the tendency of favorizing the automatization of most tasks, the need for patients to trust their doctors will never disappear as far as confidence in the physician is believed to be a key component of therapy. Often downplayed, the good character and virtues of a doctor are deemed crucial in the moral practice of medicine and the lack of the relevant emotional relationships between patients and healthcare providers could be interpreted as an unacceptable moral defect in clinical medicine.
Dimitrov P et al. Result Card ETH1 In: Dimitrov P et al. Ethical analysis In: Jefferson T, Cerbo M, Vicari N [eds.]. Structured telephone support (STS) for adult patients with chronic heart failure [Core HTA], Agenas - Agenzia nazionale per i servizi sanitari regionali ; 2015. [cited 16 June 2021]. Available from: http://corehta.info/ViewCover.aspx?id=305