Home Telemedicine for Paediatric Palliative Care Natalie BRADFORDa,b, 1, Anthony HERBERTc, Rick WALKERc, Lee-Anne PEDERSENc, Andrew HALLAHANb,d, Helen IRVINGd, Mark E. BENSINKa , Nigel R. ARMFIELDa,b and Anthony C. SMITHa,b a The University of Queensland, Centre for Online Health, Australia b Queensland Children’s Medical Research Institute, Australia c Paediatric Palliative Care Service, Royal Children’s Hospital, Brisbane, Australia d Queensland Children’s Cancer Centre, Royal Children’s Hospital, Brisbane, Australia
Abstract. Children with life limiting conditions require intensive, complex management of the physical, psychosocial and spiritual issues that evolve for the child and their family as the focus of care moves from curative treatment to palliation. Optimal palliative care for children can be limited by the lack of health professionals with the necessary skills and experience to confidently and competently manage the care of both the child and the family. The University of Queensland’s Centre for Online Health has been working closely with the Paediatric Palliative Care Service (PPCS) at the Royal Children’s Hospital (RCH) in Brisbane, Australia, to investigate the potential of telemedicine for the delivery of specialist support in the home or local community. Research conducted in Queensland has shown how telemedicine can be effectively used to link the specialist paediatric palliative care team into the home of families caring for a child receiving palliative care, regardless of their physical distance from the RCH. This qualitative report describes two case studies, each illustrating the value of home telemedicine for families at this vulnerable and distressing time. This work should provide a useful insight for other specialty disciplines contemplating home telemedicine applications. Keywords. Paediatric, palliative care, home care, telemedicine, telepaediatrics
Introduction Since 2003, The University of Queensland’s (UQ) Centre for Online Health (COH) has been working with the Paediatric Oncology Palliative Care Service at the Royal Children’s Hospital (RCH) in Brisbane, to investigate the use of telemedicine as an additional support to families caring for a child receiving palliative care at home. As an emerging field, there is limited evidence in the literature regarding telepaediatric palliative care. One home telemedicine study investigating the support post surgery of children with severe congenital cardiac abnormalities was found to decrease parental 1 Corresponding Author: Natalie Bradford, Centre for Online Health, Level 3 Foundation Building, Royal Children’s Hospital, HERSTON Queensland 4029, Australia. E-mail:
[email protected]
anxiety and facilitate early clinical interventions [1]. Other evidence surrounding the use of telemedicine in complex paediatric care focuses on the acceptability and feasibility of use in this population [2-5]. Bensink, Armfield et al (2009) also have reported the inherent challenges of evaluating this method of service delivery in paediatric palliative care for both families and clinicians. In 2009 the Paediatric Palliative Care Service (PPCS) at the RCH evolved from the Paediatric Oncology Palliative care team to include the care of children with nonmalignant life limiting conditions. At this time the Sporting Chance Cancer Foundation sponsored the home telemedicine program to enable expansion and establishment of the program as a standard service which is available to any child referred to the PPCS[6]. The program, now known at the RCH as the “Raelene Boyle Outreach Program”, is named in honor of Australian Olympic champion Raelene Boyle, a patron of the Sporting Chance Cancer Foundation. This paper describes the methods used to provide the home telemedicine service followed by two case studies which demonstrate the use of telemedicine in clinical practice. 1. Demographics Paediatric palliative care is a holistic approach to care for children diagnosed with a life limiting condition. The focus of care revolves around optimising quality of life for the child by managing distressing symptoms and supporting the family throughout the course of the child’s palliative phase and through to bereavement. The PPCS at the RCH accepts referrals from throughout the state of Queensland, Northern New South Wales, parts of the Northern Territory and the South Pacific Islands. During 2009-10, the PPCS received 59 new referrals and managed 37 deaths. The breakdown of referral by remoteness as classified by the Accessibility and Remoteness Index of Australia (ARIA) scores is shown in Figure 1[7]. Consistent with expectations, the largest numbers of palliative referrals and subsequent deaths resulted from an oncological diagnosis. 2. Estimated numbers of children requiring palliative care Geographically, Queensland is the second largest state with a population of about four million. Around 2.5 million people live in the South East corner, one million in towns along the coast with the remainder dispersed across the state in smaller rural towns [8]. During 2008-2009, a total of 519 children died in Queensland[9]. Of these cases about three quarters (76%) were from diseases or morbid states and approximately 61% involved infants and babies less than one year of age. Paediatric palliative care is an emerging sub-specialty within the broader discipline of paediatrics, with increasing recognition of the positive impact that a specialised multi-disciplinary team can have on the quality of life of children with life limiting conditions [10-14]. The provision of specialist, team-based paediatric palliative care could potentially have been of benefit to the 76% of children who died as a result of disease and morbid states in Queensland in 2008-2009. The use of telepaediatrics to support children requiring palliative care across Queensland is currently being explored by the COH with the establishment and evaluation of a novel home telemedicine service – referred to as the Raelene Boyle Outreach Program.
Outer Regional, 8, (14%)
Remote, 2, (3%) Metropolitan, 33, (56%)
Inner Regional, 16, (27%)
Figure 1. Referrals to the PPCS 2009-10 (n= 59) classified by remoteness
As well as supporting this population of children and their families, it is estimated that the prevalence of children living with a life limiting condition in developed nations is approximately 15 per 10,000 children[15]. With the population of children in Queensland estimated at approximately 881,360 this translates to approximately 1,322 children living with a life limiting condition in 2009[16]. Whilst not all of these children would need the services of a specialised service, around 50% may benefit from either direct involvement with the PPCS or indirect consultation from the PPCS with their primary health care teams[17]. The use of telepaediatrics as a mode of service delivery to support this vulnerable group is developing within Queensland and presents a viable method of reaching both health professionals and families who require support. As shown in Figure 1, 44% of patients referred to the PPCS in 2009-10 lived outside of Metropolitan areas. For these families access to services is a significant barrier and one where telepaediatrics plays an important role [18-19]. The COH has been working collaboratively with the PPCS to provide services to families irrespective of geographical location. Services are delivered direct to the family, ensuring that the support, advice and care of specialist health professionals are available with real time audio-visual communication from the hospital into the patient’s home.
3. Equipment The home telemedicine program requires reliable telecommunications, personal computers (desktop or laptops), web cameras and the Internet to facilitate real time audio-visual communication links between the PPCS and a family at home.
3.1. Hospital Equipment Several dedicated systems are available at the COH in telemedicine studios, the oncology ward and oncology outpatients department. The systems are either wall mounted or fixed onto mobile trolleys [Fig 2 and Fig 3]. The video component of a call is made using the Internet with ‘Logitech Vid,’ software that is freely available online or supplied with Logitech web cameras. Desktop computers that are not used for any other purpose are setup with a flat screen television or monitor and a wide angle web camera. Broadband ADSL that is purchased specifically for this purpose enables a web-based video call to be made without using UQ or RCH networks. As no microphone is used, no sound is transmitted through the computer and Internet. The audio component of a call is not transmitted over the Internet for two reasons; these being sound quality and confidentiality. The Internet is not always reliable and at times a call may ‘drop out’, or experience freezing and interference. Previous studies have demonstrated that when clear, reliable audio is transmitted independently, clinicians and families are more likely to tolerate fluctuations in picture quality [4]. There are also privacy issues with the remote possibility of a web based video call being intercepted. For these reasons a Polycom teleconferencing phone is used for the sharing of audio. By using standard telephone lines for audio we are able to ensure the confidentiality of the call for both the clinicians and the family, while also maintaining reliable audio communication during the video link. 3.2. Home Equipment The majority of families referred to the PPCS already have a personal computer or laptop with broadband Internet access. For the few families that do not, loan computers have been made available and a prepaid wireless mobile Internet connection can be used. Families are supplied with a Logitech 1.3 megapixel web camera that is supplied with Logitech Vid software to be used for the video calls. If the family already has a web camera at home, they are able to download the required software from the Internet, or they can be supplied with the software on a compact disk. Using existing equipment and infrastructure in the family’s home reduces the costs of conducting a home telemedicine consultation and makes the service readily accessible, available and sustainable for those who need it.
Figure 2. Example of hospital based mobile telemedicine system.
4. Facilitating a home based video call The Logitech Vid software requires an email address to create an account. For privacy and confidentiality, personal identifying user names and email addresses are not used. De-identified email accounts have been generated for clinicians and individual email addresses are generated for each family. Logitech Vid accounts are created with generic user names such as ‘Video A’. Using these email addresses the relevant contacts are added. Once a family has installed the software on their computer, they log into Logitech Vid using the email address generated for them, and their hospital contacts are visible. To initiate a video call, a time and date is coordinated with the relevant clinicians and family members. The family is asked to have their computer turned on and logged into Logitech Vid with the email address generated for them. The patient’s chart and relevant information is gathered so as to be easily accessible for reference during a call. The family is telephoned from the conference phone on their home phone or mobile and asked to place the call on loud speaker. This enables multiple people at the home site to participate in the call. The video call is made from the COH and if sound is transmitted from the home site, this can be muted from the COH site. As there is no microphone connected to the RCH site, no sound is transmitted through the computer during the videoconference. The clinicians and family members are able to use the Internet for video communication while maintaining the security, privacy and quality of audio through a standard telephone call.
Figure 3. Example of office based telemedicine system
5. Case studies 5.1. Case 1, Sophie A seven year old girl, Sophie was referred to the PPCS following diagnosis of a hepato pulmonary syndrome. Sophie’s medical history was long and complicated. As a three year old she was diagnosed with Hoyeraal-Hreidarsson syndrome, a rare congenital multisystem disorder which is characterised by progressive pancytopenia, microcephaly, cerebellar hypoplasia and growth retardation. Sophie was the only child of single mother, who lived hundreds of kilometers away from the hospital. Sophie received an unrelated cord blood transplant in May 2005 for progressive bone marrow failure which was successful in treating her panyctopaenia. Post transplant, Sophie suffered with graft versus host disease characterised by a skin rash and chronic diarrhea. She required several hospital admissions to managed infections. Two and a half years post transplant she developed micro nodular liver disease of unknown cause which stabilised after cessation of mycophenolate immunosuppressive therapy. She required ongoing enteral feeding via a gastrostomy tube. Because of ongoing complex medical care needs, Sophie and her mother elected to move closer to the hospital, leaving lifelong friends and family. In March 2009 Sophie was diagnosed with a hepato pulmonary syndrome following deteriorating respiratory function with significant cyanosis and oxygen requirements. The only option to treat this post stem cell transplant complication was a liver transplant, which given Sophie’s underlying medical problems was felt not to be in Sophie’s best interest by both her mother and her treating medical team. At the time of referral to the PPCS, it was unknown how long Sophie had to live, but it was estimated to be months rather than years. Sophie’s condition deteriorated to the point that she was bed bound and moving her was quite an ordeal. She required oxygen continually and around the clock care. Sophie became demanding of her mother’s time and reluctant to let anyone else care for her. Despite living only 8 km from the hospital, Kym was essentially house bound caring for Sophie’s needs and was feeling isolated.
Sophie’s condition had however reached a plateau and it became evident that she was stable at this new level of functioning. While telephone contact with Sophie’s treating physician and liaison nurse had been maintained, Sophie had not returned to the hospital for several months. Visits for ongoing medical review had proved extremely challenging and the alternative of support by telemedicine was welcomed by both Sophie’s mother and her physicians. Sophie’s mother was already familiar with using web based videoconferencing, and had a reliable laptop computer with a built in camera and wireless broadband Internet connected. An email was sent with instructions on how to download and install the Vid program to her computer and an account was generated for her and contacts added. Sophie’s treating physician, palliative care consultant and liaison nurse were present for the first telemedicine consult. Sophie and her mother were excited to see the team that had looked after them for so long in the hospital. Discussions of Sophie’s conditions focused on her current symptoms and their management. Sophie’s mother volunteered information about how she was managing the care situation and voiced concern regarding “how long things could go on for”. The hospital care team was able to respond offering emotional support as well as practical solutions for some of the problems raised. Sophie was interactive during the consult, and could be seen fondling her mother’s hair, cuddling her toys and generally demonstrating behavior that would indicate she was comfortable with the telemedicine consult occurring through the computer. There came a time when she had had enough of the talking and she hid under the bed clothes, a cue for the team to complete the consult. A follow up telemedicine consult was planned for two weeks time. The consults continued each fortnight and gave Sophie’s mother easy access to the specialist doctors and nurses at the hospital she had come to rely upon throughout Sophie’s treatment. As new symptoms emerged, her treatment plan was modified, and without needing to go through the difficulty of attending a hospital appointment, discussions regarding the issues that arose during the course of Sophie’s illness could be conducted face-to-face. The hospital clown doctors also started to connect with Sophie every week at home and this became the highlight of Sophie’s week as songs were sung and jokes told while the clown doctors preformed their antics and were ‘streamed’ into Sophie’s bedroom. Sophie enjoyed interacting with them, requesting favorite stories and songs. Over a time period of seven months, Sophie and her mother had 37 home telemedicine links. Twenty three links were with the Clown doctors and the remaining fifteen were with Sophie’s specialist health care team. Summaries of each consult were recorded and categorised for time spent on symptom management, psychosocial support, and practical issues such as organising supplies of medications and consumables. The breakdown of average time spent on these categories is represented in Figure 4. Sophie’s condition remained stable and her home telemedicine visits continued to provide on-going clinical management and support for Sophie and her mother on a weekly basis. For their health care team, a telemedicine consult is as easy as making a phone call with the bonus of a visual connection. The telemedicine consults vary from 10 to 20 minutes on average, comparable to an in person consultation at the hospital, with the benefits of the family saved the inconvenience of travel away from home.
Symptom Management, 31%
Psychosocial Support, 47%
Practical Issues, 22%
Figure 4. Purpose of home telemedicine consultations per Case 1 (n=37)
5.2. Case 2, Cassie Baby Cassie was diagnosed with a severe hypoplastic left heart syndrome in utero. The condition was most likely inoperable. Baby Cassie was the second child to a young family, who had another child, aged two. The family lived in regional Queensland, approximately two hours north of Brisbane. When Cassie’s condition was diagnosed, they were referred specialists in maternal and fetal medicine. It was here that the distressing news was given to this family that if Cassie survived birth, she was not expected to live for very long due to her heart defect. The family was advised to give birth in Brisbane to ensure Cassie and her mother would receive the appropriate care during birth. The family was devastated with this news and after some consideration; they elected to give birth to Cassie close to home, in their regional home town. Cassie was born in the regional hospital, was able to breathe unassisted and was even managing breast feeds. Cassie and her mother were discharged home after three days with very little planning for her care and no community support. The family received little information regarding the process and anticipated timing of Cassie’s expected death. After six days Cassie continued to do well at home, and this led to her parents questioning the original diagnosis. They drove to Brisbane to see the cardiologist, who confirmed that Cassie’s heart defect was very severe and with an aortic arch of only 2 mm was inoperable. The family was then referred to the PPCS who spent time with them before the return trip home. The family had a computer with broadband Internet access and they were supplied with a web camera. Once the software was installed on their computer, the family was able to log into Vid with the email account generated for them and a time was made to speak with the PPCS Senior medical officer. Cassie’s parents were still hopeful that she would prove everyone wrong and survive. The difficulty of hoping for the best, while needing to prepare for the worst was discussed. The family requested information on what to expect, like “how would they know” when Cassie’s health was deteriorating. Cassie was observed on camera to be feeding well, and appeared pink and well perfused. The doctor was able to explain that Cassie may become tired while feeding and experience changes in
her perfusion. Options to manage this were discussed including syringe feeding for comfort and other measures that Cassie’s parents could implement. Cassie’s mother was also able to discuss what would happen when Cassie died so that she was prepared.. A plan was developed for the different scenarios that could eventuate; Cassie could deteriorate and die suddenly without warning, or it could be a more gradual process. Explanation of the changes that would occur was gently given, and the family was advised of what action they needed to take when Cassie died. They were reassured that there was no need to phone for an ambulance, the police or indeed anyone immediately if they so wished. In their own time, when they were ready they were advised to call their General Practitioner, who had previously agreed to attend the home to complete certification. At the same time, the family was encouraged to phone the PPCS should they be at all concerned or worried about Cassie at any time. The home telemedicine consult lasted 45 minutes, giving Cassie’s mother the chance to express her emotions in the safety of her home, with her other family members present to comfort her. The PPCS were able to initiate and direct the conversations to ensure the family had the appropriate advice and a plan in place to deal with this situation, face-to-face despite being over 150km away. The majority of the consult (60%) focused on an anticipatory, practical plan for caring for Cassie during the terminal period of her life. Symptom management (20%) and psychosocial support (20%) constituted the remainder of the time spent during the consult. Cassie continued to live for several days, before deteriorating very quickly over a period of a few hours and dying at home in her mother’s arms. Only the one home telemedicine consult was undertaken. The family maintained contact with the PPCS via telephone and were able to care for Cassie in her last few days of life at home with the confidence of knowing they had a specialist team available to help them. 6. Discussion It is acknowledged that the care of children who are suffering a life limiting illness is complex and compared to the palliative care of adults, requires a greater number of and more frequent interventions throughout the trajectory of their illness [20,21]. The complexity relates to the logistics of ongoing surveillance and responsiveness in the management of symptoms at home [22-24]. We have demonstrated how a relatively low-cost telemedicine program can be used to deliver specialist health services into the home. The use of existing hardware and technology that is readily available is a viable avenue for instigating a sustainable home telemedicine program. The case studies described in this paper demonstrate a useful method of providing families access to specialist health care teams in their own home, regardless of distance. Further research is warranted to investigate the benefits for families who use home telemedicine to support the homecare of children with complex, life limiting conditions. Acknowledgements We thank the Sporting Chance Cancer Foundation and the Royal Children’s Hospital Foundation for funding this research program. This work has been approved by the RCH Ethics Committee (HREC/03/QRCH/16) and the Queensland Children’s Health Services District Executive.
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