The Values of the Patient within the Quantitative Discourse

Idiosyncrasies in constitution aside - as they are outlined previously, derived from the literature recognizing the old and the young patient - lets have a gander at the values underlying the patient stakeholder group and how the research addresses them (or not).

The patients, old and young apparently are very positive towards the TCT in general, as their diseases often carry limiting effects in mobility and socializing options the improvement of their communicative means is a welcome addition to the regularities of their palliative treatments. Ever since the first experiments198 _{the patients have shown instinctive mapping of the possibilities of the} TCT; the contact between patients, to their family and friends as well as contacting their physician on issues regarding the care and disease are expressed199_{. They seem to follow the experimental} outlines set by the researchers as well as the intended usages by the doctors/providers in such a fashion that these positive attitudes are all the promotional effect needed, with very little

encouragements beside recommending general usage needed from the medical professionals for the patient to engage in TCT200_{. The only discontent towards the TCT introduction from the patients,} old and young is in fact technological breakdowns, or catastrophic material failures201 _{[fail to} connect, choppy/blurry images/sounds, feedback in hearing aids202_{, etc.], as the technological} capacities cannot advance fast enough for them to use.

As for value constitution and realization, the patients are second only to the doctors in terms of them actually getting what they want regarding practical values, like economic benefits (or at least no drawbacks from utilizing the device), utility of the devices and overall respect for their personal ethical alignment - most commonly faith based prescriptions regarding medical treatment/care options [e.g. the sex of care nurse when facing Muslims]. In short, the primary stakeholders value realization is largely up to choice, and personal idiosyncratic alignment of values (different

198 POTS demo in: D.R. Park et.al.: "The usability of videophones for seniors and hospice providers: a brief report on two studies" in E. Ciaccio (ed.): "Computers in Biology and Medicine" Vol.35 No. 9 Amsterdam, Elsevier (2005) pg. 782 - 790 [one of the earliest demos showed that patients liked TCT, even in a very unstable form tech wise, and that 80+% would accept the device if their doctor thought the usage beneficial]

199 D.R. Park et.al. (2005) pg. 784ff 200 ibid.

201 A. Stern et.al.: "Use of home telehealth in palliative cancer care: a case study" in V. Wade (ed.): "Journal of Telemedicine and Telecare" Vol. 18 No. 5 New York, Sage Publications (2012) pg. 299

emphasis on autonomy between patients for example) as the patients right movements achievements are the definite ethical imperative all other stakeholders in the TCT experiments have to subject to. Patients know best if the technology utilized is not properly attuned to them, regarding the value and ethical imperative of non-maleficence being that the device does at least not impair care

trajectory203_{. Yet depending on personal attitude and disposition of contingent nature the patients are} quite disturbed by the device, especially material or organizational shortcomings on the providers side can lead to value deterioration and discontent with the TCT and then quickly to dissatisfaction with the care trajectory in general.

What is odd and almost schizophrenic about this constitution is that the patient is assumed to be a stable actor, with stable value configurations over the whole trajectory, when especially palliative care patients are subject to vast swings in attitude, expressing shifting values and considerations over time – something none of the papers did address. More so, the respect for the patient autonomy is derived from the classic medical ethics set of values that are eligible to be considered, and here we find a contentious issue. The values that are recognized as legitimate part of ethical concerns – the macro headers of beneficence, non-maleficence, etc. that are expressed in detailed, idiosyncratic micro actions between specific patient-doctor constellations – are determined by the classic medical ethics and in essence by the doctors. Which would not be as big a problem if not the professional adherents of said ethical set, the doctors were not also responsible for advising the patient on the choices that they can make.

The patients value alignment and choice is depending on the quality and degrees of freedom that the doctors information about available choices entails. Meaning that there is the possibility that their value alignment is curtailed by at least some potential sins of omission on the professionals counseling side – as the doctors have to submit to the patients choice, but regulate access to or at least the understanding of medical professional choices by the patient. In a simple sentence, the factual authority of the doctors has to yield to the decisional authority of the patient - that is

assuming an active, capable patient which values over the trajectory are somewhat stable that has to rely upon, and trust the medical expertise of the medical doctor advising him/her.

There is close coordination and an odd absence of fundamental conflict of values between the patient as the chief stakeholder and the doctor as the medical consultant, that is regarding the transformative effects of TCT as a high-tech, open ended communication device. Mirroring the doctor-nurse absence of conflict – which is more severe regarding ethical systems, see further below – the patient contingency on the doctors recommendations regarding TCT utilization and the experimenters. Allowing the doctors a somewhat privileged influence on the specific usage of the TCT – see following paragraph – seems to indicate an unresolved (-able?) aspect of power distribution within the primary care interaction. That is one apparently insoluble aspect of

regaining/re-invigorating doctors authority by virtue of control that the experimenters subscribe to as a hidden presupposition in engaging the patient with TCT – which appears also as part of their implicit promotional stance on the technology.

203 N. Bradford et.al.: "The case for home based telehealth in paediatric palliative care: a systematic review" in I. Pala (ed.): "BMC Palliative Care" Vol. 12 Article No. 4 Berlin, Springer (2013) pg. 8f