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.
Introduction
The increasing use of telemedicine to provide home-based medical care, education, and other services 1 is particularly relevant in pediatrics, wherein subspecialists are concentrated in academic medical centers 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 delivery 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 videoconference 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 technology has come from the field of palliative care.
The palliative and supportive care team consists of an interdisciplinary 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 bereavement 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) videoconferencing 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 Accountability Act of 1996 (HIPAA) compliant.
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 pediatric palliative care team met him and his family. His condition 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 bereavement counseling with our team's social worker.
Case 2
A 16-year-old boy had recently been diagnosed with restrictive 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 eligibility would be reassessed if he participated in personal and family counseling, had good school attendance, strictly adhered 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 telehealth 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 counseling 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 companies to provide full reimbursement for telemedicine services 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 clinician satisfaction, and saved travel time are reasons to consider telehealth for counseling and bereavement services in palliative care. We recommend a trial of telehealth counseling for patients who must travel long distances to access to counseling 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 mental health. For palliative care and bereavement counseling, 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. Further study of this expansion is also warranted.
Footnotes
Disclosure Statement
No competing financial interests exist.