TELEHEALTH SUCCESS STORY 7:
Telehealth in support of integrated care
For most people most of the time the home environment is the embodiment of independent living, where technology is serving to enhance and support optimal quality of life. Home based Assistive Technologies are often used to enable users of health and care services to remain at home, for as long as it is safe and desired, and continue to be an active and productive part of their local communities.
Remote healthcare provision (Telehealth) is found to be both efficient and effective, in terms of costs and clinical outcomes, and a powerful interface to support person centred integrated care. In most Telehealth services the technology is supporting the management and delivery of preventative and curative services, as well as the maintenance of wellness amongst patients with long term healthcare needs.
Empirical evidence also supports the assertion that Telehealth is a valuable patient driven tool, empowering users to report their symptoms on a regular basis. In this way the clinical team gets access to appropriate and timely data in an attempt to detect and promptly prevent rapid deterioration in patients’ condition. Managing treatment and related symptoms in this way is especially critical in cancer care, where many more patients now are being cared for at home.
However, can such ‘living technologies’ also support patients at their ‘end of life’? Can remote provision of service be used in terminal care to support the very emotional experience of grief and the sense of personal loss? Can this be done when the patient is a child and the entire family is involved in their care?
At The Scottish Centre for Telehealth and Telecare, we believe the answer to all these questions is YES and john’s story, below, is but one example of the care at home service that is being rolled across Scotland.
John and his family were known to the oncology team for a number of years, since before diagnosis at the age of 4. His lively character and the hardship experienced by the family made a big impact on the entire clinical team. The periods where he was admitted for prolonged treatments were characterised by all as ‘memorable’ and the challenges in coordinating care across various care environment were significant. Yet, despite much loving, support and excellent care John’s prognosis was poor and after 2.5 years of battling with cancer the focus of treatment was turned from curative to palliative care. The main effort was on enhancing John’s quality of his life during the precious few months he had left with his family.
The parents knew that they wanted to spend as much time together at home where John could be with the people who love him most. The clinical team were adamant that everything must be done to enable this family to exercise real choice in the place of death for their child. Indeed, despite the argument that care at home for children at the end of their life can be less expensive and less emotionally stressful for family members, the great majority of children in the UK still die in hospitals.
It was the clinical team who first thought of Telehealth, as a mechanism to link the home environment to the specialist services offered by the hospital based team. Video Conferencing technology is already used extensively across all inpatient units in Scotland where children and young people are being cared for. Most of the remote interactions are concerning clinician to clinician – case reviews – information exchange. However, many more clinical interactions are taking place where Telehealth is used to link patients in remote and rural locations to specialists in large urban centres of excellence.
Gaining the consent of the parents to using Telehealth at home and with total support from John, the laptop unit was installed in the home, tested and training was given to all users. We specifically chose to use laptops at homes as it is a common technology that enabled us to place specific content (guidelines and protocols) on the desktop for easy reach. Getting used to remote interaction via a small computer screen was the next hurdle to be conquered. Unsurprisingly, John adjusted very quickly to talking to his nurse on the screen. For the clinical team this was a very effective tool in the clinical management and the delivery of remote services when and where they were needed.
John died at home in the arms of his mother a few hours after the team visited him for the last time. The house call was prompted following a scheduled Telehealth session where it was clear that the end of life phase was nearly over. It was this call that made such a big difference and enabled John to experience a good quality of death – something that would have been more difficult without being able to establish the Telehealth link. Returning the unit shortly after John’s death, the mother wanted to stress that is was the machine and the effective link that made her feel safe at home. She only wished she could have had the use of Telehealth earlier on
The policy drive to shift the balance of care from acute hospital settings to provision of care closer to or in the home environment is being supported by Telehealth. The story of Baby R is another example where Telehealth is making a significant contribution to the lives of families across Scotland
Baby R was born with a medical condition that left her with severe disability, requiring extensive and intensive care and support. After an emergency operation, shortly after birth and weeks of inpatient care it was decided that she was ready to go home, for a short period before further surgery was performed. Living in one of the most remote and rural parts of Scotland it was suggested that along with the drugs, oxygen and special mattress Baby R would also be given a care at home unit, to link the family to the specialist surgeon.
Regular sessions were conducted between the family home and the treating clinician in the acute hospital. These were focused on parental support and education as well as surveillance of overall growth and development. The surgical wound site and the healing process was also monitored remotely. On some occasions primary care team members were also involved in the remote interaction and a joint action plan was agreed by all. The continuity of care, the personal attention and support were critical to ensuring that optimal care was delivered to this baby within her remote location.
However, for some patients and in some conditions the specialist input can only be delivered in hospital. Neonatal care is one example where interventions can only be provided in a specialist location and the story below is set to capture the impact Telehealth has amongst those service users.
Telehealth is already having a significant impact of the lives of families, neonates, children and young people across Scotland. Capitalising on our success in rolling out national ‘technology enhanced’ care solutions will enable us to go even further and offer the type of a National Health Service our users demand and deserve.
Scottish Centre for Telehealth and Telecare