Use of Telehealth in Pediatric Palliative Care

Abstract

Objectives:
Pediatric subspecialty care, including multidisciplinary palliative care, tends to be located in urban academic centers or children's hospitals. Telehealth provides the opportunity to care for patients who would otherwise not be able to access services. We present cases wherein telehealth was used to provide counseling services to patients who would not have been able to receive this service.

Methods:
We discuss cases of telehealth use for patient and family counseling in the setting of palliative care and bereavement follow-up. Patients who live a great distance from the hospital with limited access to services were followed by a hospital-based pediatric palliative care team. Patients and families gave feedback after use of telehealth for counseling services.

Results:
Counseling through telehealth by our hospital-based palliative care social worker was successful for all parties involved: patient, family, and social worker.

Conclusions:
Telehealth helps relieve disparity in access to services and care, which is particularly problematic in pediatrics and mental health. For the patients in this case series, it was an effective modality to receive counseling services and meet needs that otherwise would not have been addressed.

Full text

Case Report
Use of Telehealth in Pediatric Palliative Care
Billie Winegard, MD, MPH,
1
Elissa G. Miller, MD,
2
and Nicholas B. Slamon, MD
3
1
Pediatric Supportive Care, Department of Pediatrics,
University of Illinois at Peoria, Peoria, IL.
2
Division of Palliative Medicine, Department of Pediatrics, Nemours/
Alfred I. duPont Hospital for Children, Wilmington, Delaware.
3
Division of Critical Care Medicine, Department of Pediatrics,
Nemours/Alfred I. duPont Hospital for Children, Wilmington,
Delaware.
Abstract
Objectives: Pediatric subspecialty care, including multidis-
ciplinary palliative care, tends to be located in urban aca-
demic centers or children’s hospitals. Telehealth provides the
opportunity to care for patients who would otherwise not be
able to access services. We present cases wherein telehealth
was used to provide counseling services to patients who would
not have been able to receive this service.
Methods: We discuss cases of telehealth use for patient and
family counseling in the setting of palliative care and bereave-
ment follow-up. Patients who live a great distance from the
hospital with limited access to services were followed by a
hospital-based pediatric palliative care team. Patients and fam-
ilies gave feedback after use of telehealth for counseling services.
Results: Counseling through telehealth by our hospital-based
palliative care social worker was successful for all parties
involved: patient, family, and social worker.
Conclusions: Telehealth helps relieve disparity in access to
services and care, which is particularly problematic in pedi-
atrics and mental health. For the patients in this case series,
it was an effective modality to receive counseling services and
meet needs that otherwise would not have been addressed.
Keywords: telehealth, telemedicine, telecommunications,
pediatrics
Introduction
The increasing use of telemedicine to provide home-
based medical care, education, and other services
1
is
particularly relevant in pediatrics, wherein subspe-
cialists are concentrated in academic medical cen-
ters and children’s hospitals, predominantly located in urban
areas.
2
Rural areas account for about 20% of the United States
population, and the children in these areas have access to
fewer resources and subspecialists or require significant travel
for care. Several recent studies have examined the feasibility
of telemedicine use for hospice and palliative care purposes.
Telehospice has been endorsed by nurses and administrators,
3
and a recent systematic review of telehospice showed 26
empirical studies that indicate ‘‘telehospice technologies hold
promise to be useful and important tools for the future de-
livery of hospice care.’’
4
In the past, the cost of telemedicine equipment and software
provided a significant barrier that prevented many hospice
institutions from participating. Now, with the ubiquity of
smartphones, tablets, and their associated videoconferencing
applications, anyone with this technology can videoconfer-
ence securely from their homes.
Until recently, our hospital’s telemedicine program has
focused almost exclusively on intervention in the high impact
area of pediatric critical care medicine. Our telemedicine
network has grown to include >27 ‘‘spoke’’ hospital sites in our
critical care hub and has provided >500 consults in the past
year. With this success, 36 specialty services within our
medical system have sought to expand the use of telemedicine
to their practices. One of our best applications of the tech-
nology has come from the field of palliative care.
The palliative and supportive care team consists of an in-
terdisciplinary group of individuals who provide both medical
and psychosocial support. This includes a social worker who
often provides counseling services to palliative care patients
and their families. In addition, we provide 13 months of be-
reavement follow-up to families whose children have died,
consistent with Centers for Medicare &Medicaid Services
guidelines for hospice bereavement services. Palliative care
and bereavement counseling often involve our limited staff
traveling long distances for in-person counseling visits or less
personal telephone check-in visits. The following cases outline
our success using FaceTime (Apple, Cupertino, CA) video-
conferencing through an iPad (Apple) to provide services
to the families that would not have been feasible without
the technology.
FaceTime allows secure transmission of live video feeds and
is shown to be Health Information Portability and Account-
ability Act of 1996 (HIPAA) compliant. ZDNet.com wrote that
DOI: 10.1089/tmj.2016.0251 ªMARY ANN LIEBERT, INC. VOL. 23 NO. 11 NOVEMBER 2017 TELEMEDICINE and e-HEALTH 1

‘‘The iPad supports WPA2 Enterprise to provide authenticated
access to your enterprise wireless network. WPA2 Enterprise
uses 128-AES encryption, giving users the highest level of
assurance that their data will remain protected when they send
and receive communications over a Wi-Fi network connec-
tion. In addition to the existing infrastructure, each FaceTime
session is encrypted end to end with unique session keys.
Apple creates a unique ID for each FaceTime user, ensuring
calls are routed and connected properly.’’
5
In addition, we
verified this statement directly with Apple and gained
approval through our legal department. HIPAA-compliant
Vidyo, a platform that allows for multipoint videoconfer-
encing and screen sharing, was also considered. The Vidyo
service is compatible across Apple and Android devices. For
our purposes, FaceTime was easier because all families
agreeing to test this modality were loaned an Apple device.
Families were offered counseling through telehealth based
on two criteria: (1) distance from the hospital—60 min of travel
time or greater, and (2) frequency of visits needed—every other
week or weekly sessions recommended by the palliative care
social worker offering counseling services. We describe
hereunder the first two patients for whom our palliative care
team provided this service.
Case Reports
CASE 1
An 8-year-old boy suffering from hepatic failure awaiting
transplant had renal failure on renal replacement therapy
and ventilator-dependent respiratory failure when our pe-
diatric palliative care team met him and his family. His con-
dition progressed, and he was removed from the transplant list
and underwent terminal extubation. In the weeks after his
death, his mother moved into a domestic violence shelter and
began a legal battle to gain custody of her surviving child.
These stressors, combined with the death of her son, resulted in
significant counseling needs. At the time, she was living more
than 1.5 h from our hospital and had no financial resources to
travel to our facility for in-person counseling. She was unable
to find care in her local area, so we offered telehealth be-
reavement counseling with our team’s social worker.
CASE 2
A 16-year-old boy had recently been diagnosed with re-
strictive cardiomyopathy when our palliative care team met
him and his family. He underwent left ventricular assist device
placement to palliate his progressive left heart failure. He was
assessed as a poor candidate for heart transplantation because
of a history of medication nonadherence and substance abuse.
The heart transplant team established a plan in which his eli-
gibility would be reassessed if he participated in personal and
family counseling, had good school attendance, strictly ad-
hered to medication regimen and clinic follow-up, and had
frequent urine drug monitoring. Owing to lack of mental health
services in his community and inability to travel to our hospital
for counseling, he could not have met these requirements had
we not offered the required counseling through telehealth.
Discussion
In both cases, telehealth counseling sessions were 45–60
min long. In the first case, the social worker held 10 tele-
health bereavement counseling sessions with the mother,
combined with 4 in-person visits during a 6-month period.
In the second case, the patient and his family participated in
weekly individual and family therapy through telehealth
and in one in-person visit per month for a 6-month period.
The image and audio quality of the telehealth sessions were
high. The social worker was able to observe facial and body
language as well as physical cues that would not have been
possible without the video component. This improved the
quality of the therapeutic interaction to equal that of an in-
person session. As with therapy provided by licensed clinical
social workers, if the counseling is part of treatment for
a Diagnostic and Statistical Manual of Mental Disorders,
Volume 5 (DSM) diagnosis and permissible in the medical
system in which it is being done, these services would be
billable. However, our team has opted to include this coun-
seling as part of the services provided to our palliative care
patients and their families. Multiple states have recently
enacted telehealth parity laws that require insurance com-
panies to provide full reimbursement for telemedicine ser-
vices when their quality is comparable to that of an in-person
visit. The clients in these cases expressed their gratitude and
told the social worker that they were extremely satisfied with
the telehealth services and that they felt that their lives had
benefited from these services.
As these cases demonstrate, ease of use, patient and clini-
cian satisfaction, and saved travel time are reasons to consider
telehealth for counseling and bereavement services in palli-
ative care. We recommend a trial of telehealth counseling for
patients who must travel long distances to access to coun-
seling services.
Conclusions
The emergence of mobile technology for videoconferencing
has provided an affordable, high-quality, secure, and safe
alternative to conventional, more expensive telemedicine
platforms. It has relieved the disparity in access to services
and care that is particularly problematic in pediatrics and
WINEGARD ET AL.
2 TELEMEDICINE and e-HEALTH NOVEMBER 2017 ªMARY ANN LIEBERT, INC.

mental health. For palliative care and bereavement counsel-
ing, the ability to provide frequent face-to-face encounters is
invaluable to patients and their families, although further
study is required to assess its true impact. Because of our
success with virtual palliative care counseling, we have begun
to expand palliative care services through telemedicine to
include home hospice pain and symptom management. Fur-
ther study of this expansion is also warranted.
Disclosure Statement
No competing financial interests exist.
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Address correspondence to:
Elissa G. Miller, MD
Division of Palliative Medicine
Department of Pediatrics
Nemours/Alfred I. duPont Hospital for Children
P.O. Box 269
Wilmington, DE 19899
E-mail: elissa.miller@nemours.org
Received: November 28, 2016
Revised: March 9, 2017
Accepted: March 10, 2017
USE OF TELEHEALTH IN PEDIATRIC PALLIATIVE CARE
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