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BRIEF RESEARCH REPORT
published: 24 May 2019
doi: 10.3389/fneur.2019.00510
Frontiers in Neurology | www.frontiersin.org 1May 2019 | Volume 10 | Article 510
Edited by:
Marianne De Visser,
University of Amsterdam, Netherlands
Reviewed by:
Alvaro Sanchez-Ferro,
Centro Integral en Neurociencias A.C.
HM CINAC, Spain
Benjamin Aaron Emanuel,
University of Southern California,
United States
*Correspondence:
Christiane Eva Weck
christiane.weck@khagatharied.de
Specialty section:
This article was submitted to
Neurocritical and Neurohospitalist
Care,
a section of the journal
Frontiers in Neurology
Received: 31 July 2018
Accepted: 29 April 2019
Published: 24 May 2019
Citation:
Weck CE, Lex KM and Lorenzl S
(2019) Telemedicine in Palliative Care:
Implementation of New Technologies
to Overcome Structural Challenges in
the Care of Neurological Patients.
Front. Neurol. 10:510.
doi: 10.3389/fneur.2019.00510
Telemedicine in Palliative Care:
Implementation of New Technologies
to Overcome Structural Challenges in
the Care of Neurological Patients
Christiane Eva Weck 1
*, Katharina Maria Lex 2and Stefan Lorenzl 1,2,3
1Krankenhaus Agatharied GmbH, Hausham, Germany, 2Institut für Pflegewissenschaft und -Praxis, Paracelsus Medizinische
Privatuniversität, Salzburg, Austria, 3Palliative Care, Ludwig Maximilian University of Munich, Munich, Germany
Telemedicine provides a possibility to deal with the scarcity of resources and money in the
health care system. Palliative care has been suggested to be appropriate for an increasing
number of patients with neurodegenerative disorders, but these patients often lack care
from either palliative care or neurology. Since palliative care means a multidisciplinary
approach it is meaningful to use palliative care structures as a basis. There exists no
systematic access to neurological expertise in an outpatient setting. A successful link of
two existing resources is shown in this project connecting the Department of Neurology
of an University Hospital with specialized outpatient palliative care (SPC) teams. A
videocounselling system is used to provide expert care for neurological outpatients in
a palliative setting.
Methods: A prospective explorative single arm pilot trial was implemented to provide
a mobile telesystem for 5 SPC teams. The opportunity was given to consult an expert
in neuropalliative care at the specialized center in the hospital (24/7). Semistructured
interviews were conducted with the physicians of the SPC teams after a trial duration of
9 months.
Results: Our data provides strong evidence that the technical structure applied in this
project allows a reasonable neurological examination at distance. Qualitative interviews
indicate a major impact on the quality of work for the SPC teams and on the quality of
care for neurological patients.
Conclusion: The system proves to be useful and is well accepted by the SPC teams.
It supplies a structure that can be transported to other disciplines.
Keywords: neurological, telemedicine, neuropalliative care, specialized outpatient palliative care team,
videoconsultation
BACKGROUND
A multidisciplinary palliative care approach improves patient’s quality of life and symptoms in
advanced neurological diseases (1). End of life care in neurological diseases is often challenging
since disease trajectories are less predictable compared to cancer patients (2). Furthermore, either
the palliative care expertise might be lacking in neurologists or the neurological expertise be missing
in palliative care experts (3).
Weck et al. Telemedicine in Neuropalliative Care
Outpatient Palliative Care services are a multidisciplinary
approach with a network around the core team. A specialized
outpatient palliative care (SPC) support which enables patients
to stay at home is currently seen as the most appropriate form
of palliative care. Usually, the neurological expertise is lacking
in SPC teams which makes it difficult to handle patients with
either neurological diseases or neurological symptoms. In most
countries no regulated approach to a neurological consultant in
an outpatient setting is established.
Owing to the increased awareness of the benefits of palliative
care for non-cancer patients, telemedicine might provide a
solution to cope with the growing requirements in the health
care system. It enables the provision of expert medical opinion
over long distances and can transport the support to virtually any
place. It offers the opportunity to enhance quality and capacity
of medical care (4). Especially in rural areas a lack of experts due
to a lack of human resources could be overcome by providing
expertise via telemedicine. It gives the possibility to monitor
patients with advanced illnesses at home (5).
Here we describe an established system that provides the
opportunity to consult an expert in neurology/neuropalliative
care via a teleconference app.
METHODS
Study Design
A single center, multi-site, non-randomized trial was conducted
at a Bavarian Neurological Medical Centre with expertise in
neuropalliative care. Five teams were equipped with a mobile
telesystem to consult an expert in neuropalliative care at
the specialized center (24/7). The mobile telesystem allows a
videoconsultation between the patient at home and the medical
center. Patients had to meet the following criteria: (1) to be
attended by one of the five selected specialized outpatient
palliative care teams with a (2) diagnosis of a neurological
disease or having a cancer diagnosis suffering from neurological
symptoms. Ethics were approved by University Ethics committee
(Nr. 17-068) and the study was registered at the DRKS.
Each team selected has been equipped with a mobile
teleconsultation device consisting of a mobile phone with a
high resolution camera (Samsung Galaxy S6) supplemented
by a mobile WIFI router and a small tripod (see Figure 1A).
Additionally, a WIFI router which offers the opportunity to
generate a wireless LAN, has been supplied.
The videoconference software (MEYDOC R
) is installed on
the mobile device as an app. The acquired software ensures
high data integrity providing a point to point communication
with authenticated endpoints, the server is used only for call
control procedure and an end to end encryption is used. The
teleconsultation equipment at the medical center consists of a
laptop with the videoconference software installed.
Intervention
Teleconsultations are held on demand. When the outpatient
team identifies a symptom which is difficult to control, a call is
made to the expert medical center for an appointment.
Depending on the acuteness of the problem the
teleconsultation usually is scheduled within the next 1 to
5 days. Generally, the teleconsultations can be scheduled
beforehand. However, emergency calls are possible (24 h/day).
The screen to screen contact is built up between the patient’s
home and the specialist in the medical center. The hospital-based
neurological team consists of two neurologists (one having major
expertise in neuropalliative care). A physician or a nurse of the
specialized palliative outpatient team is involved by joining the
video consultations at the patient‘s home.
For data analysis we have used a mixed methods approach.
Quantitative data: We have documented personal data of
the patients, the neurological diagnosis, main neurological
symptoms, and the technical quality of the teleconsultation
(ranking by the physicians at the medical center on a NRS 1-5).
For qualitative analysis we have used a semistructured interview
guide (see Table 1a).
After a trial duration of 9 months the researchers conducted
five semi-structured ethnographic interviews with the leading
physician of each specialized palliative care team. The interviews
were recorded, transcribed and anonymized. They were subjected
to a pragmatic thematic analysis of the content conducted by CW
and KL.
RESULTS
Specialized Outpatient Palliative Care
Teams–Selection and Characterization
We asked seven SPC teams in Bavaria to participate. Finally,
five teams agreed to participate (One team never answered
the proposal. The other team already had the support of
a neurologist.) The teams covered an area of about 7,250
km2(ranging from 317 to 2,370 km2) with a population
density ranging from 113 inhabitants per km2to 4,713
inhabitants per km2, employing from two to 5.4 physicians.
In the five participating teams the specializations consist of
anaesthisiologists (9), general practitioners (6), internists (7), and
one geriatrician. In one team a neurologist stepped in during the
ongoing trial.
Technical Feasibility
The first 26 videoconsultations were evaluated for their technical
quality. A stable connection with a satisfactory quality of the
visual and acoustic components even in rural areas is feasible
using the dual phone card solution and the mobile wireless
LAN router (NRS 2). In two cases problems occurred with
the audio line. In some cases the pre-existing wireless LAN
of the patient‘s home was utilized. Redialling was sometimes
necessary to establish the connection. However, in every case a
teleneurological consultation with sufficient quality to determine
the acute problems and to make a neurological assessment
was possible.
Quantitative Data
Until March 2018, 37 teleconsultations were held concerning
21 patients. Eleven of the consultations were conducted via
telephone, 26 consultations via videoconference. Figure 1B
Frontiers in Neurology | www.frontiersin.org 2May 2019 | Volume 10 | Article 510
Weck et al. Telemedicine in Neuropalliative Care
FIGURE 1 | (A) Teleconsultation device consisting of a mobile phone, a small tripod and a mobile WIFI router; (B) Number of patients co-supervised per SPC team
(team 1 to 5 on the x axis); (C) Frequence of symptoms discussed in the consultations.
shows the number of patients co-supervised per team varying
from nine to two patients. In 48% of the cases a re-consultation
was conducted with up to 4 follow up consultations for one
patient. Fourteen of the 21 patients were cared for by the SPC
for neurological disorders. The other seven patients had an
internal or oncological diagnosis and neurological symptoms.
Half of the patients suffered from motor neuron disease, three
of them from glioblastoma. The other four had Parkinson‘s
disease, Progressive supranuclear palsy, a non-convulsive status
epilepticus and unclassified dementia. Figure 1C shows the main
neurological symptoms discussed in the video and telephone
consultations from all of the 21 patients. The leading symptoms
were dysphagia, hypersalivation, laryngospasm, spasticity, and
epileptic seizures or non-convulsive status epilepticus.
Qualitative Data
A positive impact of the telemedical project for the teams
and the patients is the core tenor of the interviews. The SPC
teams perceived that the patients highly accepted a neurological
telemedical visit. Recommended therapy procedures, discussed
in the teleconsultation often led to efficient symptom control
thereby improving patient’s quality of life, as perceived by the
SPC teams.
TABLE 1a | Interview guide.
Questions
1) How did you handle neurological problems prior the participation in
the trial?
2) Did the project influence your job satisfaction?
3) Did the project modify your daily job activity? If yes, how did it change
your work?
4) How do you estimate your knowledge concerning neurological problems
prior to and post-trial participation?
5) Did you have problems with the technology, which were the most
disturbing ones?
6) Did you think there was a problem with the patient‘s acceptance of the
telemedical system?
7) Do you have any suggestions for the next trial stage?
8) Miscellaneous
Even if there has been no improvement with the suggested
treatment, the fact that everything possible was done by
consulting a specialist, has been significant enough to have a
positive effect on the patient‘s satisfaction. Physicians experience
an obvious increase in the satisfaction with the quality
of their work. SPC teams feel safer having a neurological
Frontiers in Neurology | www.frontiersin.org 3May 2019 | Volume 10 | Article 510
Weck et al. Telemedicine in Neuropalliative Care
TABLE 1b | Quotes of the semistructured interviews.
Patient‘s acceptance of the neurological telemedical screen to screen visit “…if we inform patients that we want to consult a neurologist, who is unable to come in
person but joins us via a videoconference, patients are actually enthusiastic”(interview C,
line 57–58)
“…they rather thought this was a really good idea and were excited, because when
suffering from ALS or MS they no longer manage to visit the resident
neurologist.”(interview D, line 192–194)
Symptom control by recommended therapy “Patient X… she lived quite a long time with a significant increase in mobility and was very
satisfied and extremely thankful.” (interview C, line 15)
The fact that everything possible was done by consulting a specialist “patients are highly satisfied also because they feel comprehensively cared for.” (interview
A, line 41)
Satisfaction with the quality of their work increases in the SPC teams “where a new neurological symptom supervenes … and I feel incapable of making the
right diagnosis and initiating the accurate therapy … it is really brilliant for this.”(interview
C, line 34–37)
“in other cases there were fewer consequences (therapeutically), but we got
certainty”(interview C, line 11–12)
Clear structures make it easier to discuss neurological problems “if we have a reasonable initial suspicion“ (interview C, line 23–24).
“It was extremely helpful, we may never have solved such questions” (interview D, line
125–126).
The visual component is a key feature of the system “… asking you without inhibitions, and not only calling and describing, but really
displaying, having you with us in the living room (via camera)” (interview D, line 26–27).
telemedical background. There was no clear structure in
handling neurological/neuropalliative questions in any of the
teams prior to the participation in this trial. Strategies used
before the telemedical application included asking the residential
neurologists or the nearest neurological department, reading
books and making treatment decisions on their own. Therefore,
using the telemedical application even these structures for the
teams have been improved. The project changed the awareness
of neurological symptoms, it resulted in a faster consultation.
It has been highly acknowledged to have a contact person with
neuropalliative care expertise. To further point out: a key feature
of the telemedical approach with a huge significance is the visual
component of the consultation.
Suggestions for technical improvement were a bigger display
for the videosystem at the patient’s side and the request for a
timely fixed consultation hour beyond the videoconsultations,
for short discussions concerning neurological symptoms or
medications (quotes of the interviews are listed in Table 1b).
DISCUSSION
In this small pilot study we have been able to show for the
first time that telemedical support for SPC teams with a focus
on neurological patients or neurological symptoms in oncology
patients is technically feasible and supports the team’s treatment.
It enables the teams to get rapid access to neurological and
neuropalliative care expertise without losing contact to the
patient. Until now, there was no clear structure in the teams
in dealing with these issues which often caused troubles since
neurological expertise is usually only available during hospital
treatment. However, since patients with progressed neurological
diseases are usually bedridden and have severe communication
problems they are frequently difficult to transport to a hospital
or even a palliative care unit. Telemedical consultation therefore
enabled the patient to stay at home and the SPC team to be the
primary provider of care using expert opinion on demand. This
also strengthened the relationship between the patient and the
SPC team.
Patients with a neurological diagnosis are seldom cared for by
SPC teams. Due to the growing awareness of the usefulness of a
multidisciplinary palliative approach in progressive neurological
conditions, we suggest a growing number of neurological
patients in the specialized outpatient teams. The telemedical
project offered clearly defined consultance structures which
also improved the quality of work and job satisfaction of
the SPC teams. The interviews with the physicians report a
high acceptance of the telemedical application by the patients.
It is important to point out that in some cases where we
couldn’t add much to symptom control, only the patient’s
awareness of comprehensive medical care brought benefit to
the patient. To get an unbiased view of patient’s acceptance
further interviews with the patients and caregivers have to
be performed. The offered system, especially because of the
possibility of a visual way of appraisal, yields more safety in
the care for neurological palliative outpatients. Furthermore,
the system is small, easy to carry and it stands out due to a
simple application.
Since this is a pilot trial, the number of patients is too small
for statistical analysis. Not surprising is the fact that half of the
patients with a neurological diagnosis cared for by SPC teams
suffer from ALS. This is one of the few neurological diagnoses
where the need and the benefit of a palliative support is already
comprehensively proven (7). Therefore, the main symptoms
discussed in the videoconsultations were pseudohypersalivation,
laryngospasm/choking fits, dyspnoea, and spasticity.
The concentration on neurological and neuropalliative care
questions and the encompassed needs in a palliative situation
proves successful. A comprehensive palliative care approach can
be difficult to provide via telemedicine as shown in a telemedical
approach for pediatric palliative care (6). Further application
might provide access to specialist in cardiac or pulmonary
care (8).
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Weck et al. Telemedicine in Neuropalliative Care
The system we offer works even in rural area. The technical
construction (two mobile cards and the WIFI router) is stable
enough even with a low bandwidth. As a future task, we are
currently preparing to include more SPC teams as we have seen
that based on the amount for videoconsultation we can provide
our knowledge to an even larger number of teams. The suggested
improvements (bigger display of the videotool and a consultation
hour) will be implemented.
In conclusion, the qualitative interviews suggest that
expert neurological and neuropalliative consultation is
helpful in SPC teams concerning patients quality of life
and the quality of work for the SPC teams. Our telemedical
approach offers technical components which are easy
to handle and have stable communication lines even
in remote areas. The telemedical “home visitation” of
a specialized neurologist has been well accepted by the
teams. It provides an easy and effective way of symptom
discussion and treatment evaluation. Further research
is needed to explore telemedical applications in palliative
care consultations.
ETHICS STATEMENT
Ethics committee Ludwig Maximilians University Munich. 17-
068, 6.6.17. Written informed consent was obtained from all
participants in this study.
AUTHOR CONTRIBUTIONS
CW and SL are the Researchers in the Project. The Project
was initiated by SL and CW was part of the Project from the
beginning. KL and CW evaluated the qualitative Research part.
FUNDING
This project was funded in total by the Bavarian State Ministry of
Health and Care Services.
ACKNOWLEDGMENTS
The authors thank Helen Salcher for her support in English.
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Conflict of Interest Statement: The authors declare that the research was
conducted in the absence of any commercial or financial relationships that could
be construed as a potential conflict of interest.
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