Cloud-based platform for palliative care at home

Dr Yingwei Wang from Taiwan introduces this week’s special series on Palliative Care in South East Asia…

In December 2014, Sheila Payne, Emeritus Professor, International Observatory on End of Life Care, and past president of the European Association for Palliative Care, went to Taiwan to support the development of a new palliative care research network in South East Asia. In Tapei, she took part in the 3rd Building the Collaborative Research Platform and Professional Training Workshop for Cancer Treatment, Hospice/Palliative Care and Bioethics in South East Asian countries and took the opportunity to invite some of the delegates to contribute to this special series that continues this week.

Dr Yingwei Wang, Chief, Lotus Heart Hospice; Tzuchi General Hospital and Department of Medical Humanities at Tzuchi University, Taiwan, explains how modern technology is helping patients to die at home.

Dr Yingwei Wang demonstrating a telephone video consultation

People spend most of their time at home during the last year of their life in Taiwan. Home is the preferred place of death in most cultures, yet many people die in hospital due to various reasons. Studies show that the barriers to providing end-of-life care at home included the non-availability of a 24-hour medical support team, and lack of available medical facilities and resources in the community. In Lotus Heart (Buddhist) Hospice in Taiwan, we have been using modern technology to develop a ‘cloud platform’ to provide the resources that are necessary to enable patients to stay at home, and to supplement the support of competent caregivers.

A recent systematic literature review on home-based palliative care showed that the most frequently reported unmet need was effective communication with healthcare professionals. Yet families rely on the information, advice and support provided by clinicians.

Dr Wang and his team. Also pictured are visitors, Prof Sheila Payne, (4th from the left) and Prof Margaret O’Connor (third from right)

The development of the ‘cloud platform’ was based on the needs of patients and caregivers when providing end-of-life care at home. The platform comprises two interfaces (patient/caregiver and health professional) and six modules.

The patient/carer interface includes:

• Information about caring and the disease process, either in video or booklet format.
• A medical facilities resource module enabling patients and carers to access the required resources from the community.
• A collaborative care module enabling patients and carers to find a support group, social network and volunteers through the web-based platform.

The health professional interfaces include:

• A physiological monitoring module that allows the patient’s physiological condition, e.g. heart rate, blood pressure, blood oxygenation and even tele-stethoscope to be recorded in the cloud medical system. The medical team will be informed automatically of any abnormality in the data.
• A case management system that includes the input of the subjective symptoms from patient/carer and visual health consultation.
• A medical integration system integrates the hospital information system and home palliative care system enabling seamless transition between different care settings.

The Cloud Platform

We have noticed the following positive outcomes since using the cloud platform: a reduction in unplanned admission rates, reduced use of health resources, enhanced communication between clinicians and families, and decreased anxiety on the part of patients and carers.

Some people have questioned the use of physiological monitoring at the end of life but we found that the use of monitoring facilities decreased after one week of the programme. Carers feel safer and more comfortable when caring for dying family members at home. The platform also provides a multilingual system that enables many foreign healthcare assistants to overcome language barriers.

In traditional Chinese culture, dying at home is the ultimate goal for successful life completion. We all know that modern IT cannot replace the compassionate caring by family members. However, the cloud-based platform can improve the quality of care for those who want to stay at home in the final stage of life.

References
Bradford N, Armfield NR, Young J and Smith AC. The case for home based telehealth in pediatric palliative care: A systematic review. BMC Palliative Care 2013, 12:4. (Open access: available to download).

Ventura AD, Burney S, Brooker J, Fletcher J and Ricciardelli L. Home-based palliative care: A systematic literature review of the self-reported unmet needs of patients and carers. Palliat Med 28, no. 5 (2014): 391-402.

Coming up on the EAPC Blog…
Later this week we shall be publishing posts from Dr Rojim J Sorrosa (Philippines) and Dr Natalie Evans (Singapore).