Coronavirus disease 2019 (COVID-19) disrupted palliative care and other healthcare services as health systems were quickly overwhelmed with patients and by public health measures requiring social distancing and restricting face-to-face contact.1 These challenges have spurred the adoption of digital health (DH) in many health systems across the globe.2 Digital health is mainly concerned with the use of routine and innovative forms of information and communications technology to address health needs. Digital health has become an umbrella term that encompasses eHealth, telemedicine, mobile health (or mHealth), and emergent technologies such as big data analytics and artificial intelligence.3,4
The value of DH in advancing universal health coverage and other health aims of the Sustainable Development Goals is clearly underscored in the 2018 resolution of the World Health Assembly. At the same time, there is broad recognition that DH is not a panacea for many persistent challenges in healthcare. For instance, DH cannot improve access to palliative and end-of-life care during a pandemic if the pandemic plan of the health system does not include any provision for such a service.5 The pace of digitalization in healthcare is likely to pick up in the foreseeable future, making it important for healthcare professionals (and nursing professionals in particular) to avoid a false dichotomy between high-tech and high-touch healthcare.6 The well-being of patients and their caregivers is best served by ensuring that technological advancements enhance and render more holistic an increasingly diverse set of care relationships. Arguably, the legacy of this pandemic should be the digitalization of healthcare and the adoption of a reflective attitude toward how high-tech could be seamlessly and effectively blended into high-care, particularly in palliative and end-of-life care.
Sustaining Relationships of Care. The effective means that DH provides for overcoming many barriers to accessing palliative and end-of-life care include (1) surmounting geographical barriers to access care, even if DH cannot completely replace face-to-face visits; (2) reducing burdens on hospitals by enabling models of home-based palliative care; (3) supporting informal caregivers of those who wish to die at home; (4) empowering individuals through virtual communities and social media platforms; (5) supporting individuals to participate in advance care planning using online platforms, and enabling clinicians to access them to avoid futile treatments; (6) managing symptoms through the use of virtual reality; and (7) offering limited companionship through the use of robotic pets for certain patient populations.6,7 For example, telemedicine can allow family members to be present when a loved one is dying and can help family members to manage grief through online bereavement support and counseling. Moreover, DH provides a powerful tool to collect patients’ objective and subjective data (eg, patient-reported outcomes). Such data can be effectively utilized through data analytics in decision support systems, where more accurate prognoses can be matched with patient preferences expressed in advance care plans.
There are strong justifications for embracing digital technologies, but this becomes an ethical mandate only if we become better caregivers—whether formal or informal—in doing so. The ethics of care lend support to embedding DH in care practices and in ways that empower caregivers to reach care goals. Broadly speaking, the ethics of care have four features8: (1) the moral importance of attending to and meeting the needs of particular others for whom we take responsibility (eg, parent-child, healthcare provider-patient); (2) moral emotions (such as sensitivity and responsiveness) are valued because these emotions enable morally concerned persons to understand the best thing to do; (3) actual relationships are prioritized over abstract rules (which is arguably more important as the patient’s ability to make autonomous choice gradually wanes); and (4) goes beyond a formalistic view of the relationship between a healthcare provider and his/her patient (ie, the fiduciary aspects of the relationship are emphasized over a contractual relationship). Put simply, the ethics of care require the application of DH in ways that enhance crucial elements of care,9 including (a) attentiveness to the needs of patients and caregivers, (b) responsibility in roles of care, (c) competence in appropriate and abled use of digital technologies, and (d) responsiveness of the care receiver to digitally enhanced care.
Ethically speaking, digital technologies should empower their users to discover and use their own abilities to determine and achieve goals of care. Empowerment enables caregivers to make informed decisions and to set behavioral goals to make changes that respond to the needs of the patient. As empowerment should be closely aligned with the principle of autonomy and the goal of shared decision-making, empowerment should not be exclusively or primarily a matter of technological endowment but should remain firmly a mutually constructive and interactive process. The ethos of empowerment affirms the patient and his/her caregiver as knowing his/her own needs and able to address his/her own problems in a manner appropriate to their situation and condition. Supporting patient autonomy involves eliciting and acknowledging the patient’s perspective, supporting the patient’s initiative, offering choice about treatment options, and providing relevant information while minimizing pressure and control.
Are We Prepared?. Digital health has a great potential to empower nurses to provide a high quality of high-tech and high-touch care in palliative care settings, including providing and monitoring pain management, helping to alleviate physical symptoms (respiratory difficulties, nausea, etc), dispensing medications on schedule, educating patients and families on symptom management, and providing emotional support. COVID-19 has changed the world and possibly forever. We nursing professionals need to embrace these changes and to equip ourselves by obtaining new DH-related knowledge and skills and being aware the potential ethical issues regarding the use of DH in palliative and end-of-life care to embrace the unknown future.
With all best wishes,
Calvin Wai-Loon Ho, JSD
Department of Law and Centre for Medical Ethics and Law The University of Hong Kong, Hong Kong
Chia-Chin Lin, PhD, RN, FAAN
Editorial Board Member, CANCER NURSING School of Nursing, Li Ka Shing Faculty of Medicine The University of Hong Kong, Hong Kong
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