Is there scope for technology to add value in palliative care?
A blog post written by Priyanka Bhattarai, Research Associate, ELDAC (End-of-Life Directions for Aged Care)
Palliative care is an approach that aims to meet the needs of people living with or dying from a life-limiting illness and to support their families. Although sometimes used interchangeably, palliative care, end-of-life care, and terminal care, represent different things. Palliative care is applicable early during illness, in conjunction with other life prolonging therapies, and includes investigations needed to better understand and manage distressing clinical complications/symptoms. While terminal care (encompassed within palliative care) occurs as the person approaches the last days or weeks of life.
The Australian National Palliative Care Standards 2018 notes palliative care to be the ‘everyone’s business’ and that it should be available to all people living with advanced progressive disease regardless of the diagnosis. In any case, there is a need to ensure that care providers are able to understand the needs, values and preferences of their patients, and can plan and deliver person and family-centred palliative care utilising effective communication strategies and shared decision-making. Given the ubiquity of digital devices in today’s workplace and increasing ownership among consumers, there may be some scope in utilising these versatile machines to assist patients, families and clinicians in this process.
Computers and health informatics tools have been utilised in the domains of health care for over three decades, however, their diffusion has not greatly penetrated the field of palliative care. While use of telehealth, telemonitoring and tele-hospice approaches has been trialled, potential of advanced technologies such as integrated palliative web-platforms, mHealth based approaches, and use of sensor-based assessments in palliative care remains greatly unexplored.
The enormous growth and usage of internet over the last 15 years has resulted in large pools of health and medical information now being available freely on the worldwide web. Vast array of palliative care information is available to clinical and non-clinical consumers from thousands of websites. In addition, there are various credible Australian websites (such as: CareSearch, palliAGED, ELDAC) providing synthesized evidence summaries, and toolkits to assist clinicians provide better palliative care to their patients. With the increasing use of computers for patient/resident data storage and management in almost every care setting, it is worth considering ways to have the synthesized evidence based-information and toolkits integrated within the computer (IT) systems across the care settings. Such integration could provide clinicians with timely access to relevant information, enhance palliative care planning, and can facilitate appropriate end-of-life discussions and decisions.
Another way that technology can contribute towards palliative care is via stretching the access of palliative care delivery. Virtual palliative consults mediated via video conferencing (using computers, tablets or smartphones), video-based guidance on management of symptoms, and ongoing planning with patient and family could be valuable in reaching consumers requiring palliative care spread across geographical locations. In addition, mobile phones and wearable devices (such as smartwatch and trackers) with their in-built sensors could record and transmit patient data to clinicians real-time. This information could be valuable for clinicians to detect early signs of patient deteriorations and help devise a management plan aimed at timely symptom relief and support quality of life.
The versatility of smart devices allows for complex technological features to be embedded within simplistic delivery platforms while ensuring the design and usability is acceptable to the end users. One way of doing this is developing a web-based dashboard or a smartphone/tablet Application (App) for use by palliative clinicians and patients. While there are some apps available for palliative care such as palliAGED or palliMEDS, they are primarily geared towards information provision on symptom management, advance care planning, and EOL. However, there is the potential to use these platforms to create more interactive and supportive applications that can help track, monitor and inform care and decision-making across the care trajectory and customised to the needs of the individual person.
The community is rapidly taking up new platforms and applications across a range of functions and activities from managing finances, booking travel to staying in touch with family. Patients, clients, and care providers are becoming more technologically well literate, or even tech-savvy! This offers an opportunity to utilize and integrate these devices in the process of palliative care planning and delivery. There are already well-established technology programs in a number of health areas, and we need to ensure that the benefits (and the protections) being developed in these areas can be utilised within palliative care. As we live in an age where patient and families are considered partners in care, technology-based applications and systems must be developed in partnership with end-users. Patients, families and the community need to be actively involved in the decision-making process so we can work with them in synthesizing the vast array of healthcare resources in meaningful form, to allow real-time data capture and live data-sharing feature.
Priyanka Bhattarai, Research Associate, ELDAC (End-of-Life Directions for Aged Care)