Optimization of complex palliative care at home by making use of expert consultation via telemedicine - a socio-ethical study

Due to the extensive growth of non-acute ways of dying in Western countries and
a growing demand by people to die at home, Western societies have a desire to
locate high-quality palliative care at the patient's home. Good caring and
supporting relationships between the patient, the family, and the caregivers in
the practice of palliative medicine and care are at the basis of high quality
end-of-life care. Communication is central in building these relationships.
It is believed that the desire to locate high-quality palliative care at the
patient's home can be realized with telemedicine, while telemedicine
facilitates communication: both the general practitioner and the patient can
easily converse with the medical specialist. In addition to these conversations
the patient and his/her proxies have easy access to the home care institution
as well as other sources of information, and the patient has a multifunctional
tool to build new and maintain existing social networks. A
telemedicine-application, however, will not only facilitate communication
within existing caring and supporting relationships but also change it and even
create possibilities for new relationships.

The primary objective of this qualitative, socio-ethical study is to
investigate how patients, proxies, general practitioners, and medical
specialists experience a multifunctional telemedicine-application at the
patient*s home, introduced primarily for the purpose of a weekly palliative
care teleconversation with the patient, and whether (and why) they find this
telemedicine-application acceptable.
The secondary objectives read as follows: a) to investigate whether and how the
TM-application mediates interpersonal communication between patients, proxies,
caregivers, and medical specialists via the application as well as
computer-mediated communication with the application (e.g. Twitter), b) to
investigate whether and how the people involved in the process of care giving
in the last phase of life adapt to the weekly palliative care teleconversation
with an expert and create new every day routines in the care for the patient,
c) to investigate whether, how and why the use of a telemedicine-application
for the purpose of palliative home care can be reconciled with ideas about *a
good death* and *good palliative care* of patients, proxies, caregivers,
medical specialists, and bioethicists, and d) to investigate whether and how
the telemedicine-application empowers the patient to stay in control of his/her
own care.

The central focus in this study lies on the participants* experiences with as
well as their acceptance of a telemedicine-application in the practice of home
based palliative care. Inasmuch as experiences and acceptance are personal
matters residing in the subjects' inner thoughts these can be revealed by
asking them about their experiences with and the ways they (do not) accept the
telemedicine-application - this is called interviewing. In addition we will
monitor the patients' and others' conduct with the TM-application by doing
observations. In this study multiple observations at different points in time
will precede the follow up interviews.

A telemedicine-application, installed at the patient*s home for the purpose of
a weekly palliative care teleconversation between the patient and the medical
specialist

For the observations, participants have to open up their homes to the
researcher. For the interviews, participants have to reserve some time. For the
patient and proxies the interviews can be tiring, both physically and mentally.
For saving patients and proxies the burden of interviews taking too long,
sequences of shorter interviews have been introduced.
We also foresee that patients and proxies can somehow be affected by the topics
discussed during the interviews, although the (use of the) TM-technology will
always be the point of departure. A problem-solving protocol is designed to
manage potential problems (see section 7.2).
The benefit lies with the teleconversations with the medical specialist and the
home care institution, which can empower the patient to stay in control of
his/her own care process. Moreover, the telemedicine-application can help to
build new and maintain existing social networks. The teleconversations between
the medical specialist and the patient could also enrich the advisory
relationship between the medical specialist and the general practitioner.