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DEPARTMENTS: Guest Editorial

Drawing on Social Media to Enhance and Personalize Decision-Making and Care at the End of Life

Ho, Calvin Wai-Loon JSD; Lin, Chia-Chin PhD, RN, FAAN

Author Information
doi: 10.1097/NCC.0000000000000969
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Healthcare digitalization and related “Big Data” analytics, as well as artificial intelligence, have created possibilities for more personalized treatment of patients and, in some instances, allowed for care that is more precise, predictive, and preventive.1 These technological developments present an opportunity to introduce greater patient-centricity into end-of-life (EoL) care plans by ensuring that the values and wishes of the patient are reflected as much as practicable.

Recent initiatives aimed at integrating EoL care plans into electronic health record systems that are designed to support medical decision-making is a clear step in this direction.2 Through such initiatives, the patient would be able to specify individuals who should be consulted for surrogate decision-making should the patient lose that capacity. Such an EoL care plan could also be further personalized by including add-on features that would allow the patient to select customized healthcare interventions.

Big Data analytics and artificial intelligence could also conceivably be, within ethical and legal constraints, built into such an integrated electronic health record system to help identify social media data that could enhance understanding of the patient’s values and preferences by trawling through his/her social media profiles. Such a technological capability may be particularly helpful for patients who do not have an advance care plan, or one that is, for a variety of reasons, incomplete or inclusive.

In health systems across East Asia, it is common practice for a family member of the patient to take on the role of a surrogate or substitute decision-maker, depending on jurisdictional requirements. From both ethical and legal perspectives on patient-centered care, this decision-maker should consider the welfare of the patient at the point of decision-making and try to put himself/herself in the place of the patient. However, it is not possible to ensure that the surrogate or substitute decision-maker is deciding as the patient would have on that specific matter at that point in time or that decisions made on behalf of the patient are consistent with his/her values and wishes. This concern is compounded when the patient has not chosen the surrogate or substitute decision-maker. Decisional conflicts among family members during EoL decision-making are well documented,3 and the ultimate decision on EoL care may be made based on a family member’s preferences rather than a clear understanding of the patient’s values and wishes. High levels of inconsistency in EoL decision preferences in the patient-family dyad suggest that lack of communication between patients and their families is prevalent. In extreme cases, disagreements among family members and healthcare providers could be resolved through legal means, but the outcomes might still not be based on the values and wishes of the patient concerned. Active measures that are taken to integrate patients’ values into EoL care could help to enhance patient-centric and values-based care.

Looking ahead, contents that are shared by patients on different social media platforms, such as Twitter, Facebook, and LinkedIn, offer new opportunities to better understand what these patients value or are deeply concerned about. Even while a patient has decision-making capacity, information from his/her social media platforms could help to illustrate the patient’s values and preferences. For instance, users of social networking sites frequently comment on health and medical preferences, and such information could provide insights as to how an active user of these platforms is likely to decide on a particular matter. There are, however, significant ethical and legal concerns, which are at this stage still not well defined or considered. Some of these concerns are similar to those that arise from the use of social media to track and recruit research participants, and some guidance has since been developed for institutional review boards or other similar types of research oversight bodies.4 It is beyond the scope of this editorial to delve into these concerns, but our intent here is to highlight a technological potential that should be nurtured and harnessed with the goal of personalizing EoL care. We argue that in order to decide in the best interests of a patient without decision-making capacity, the surrogate decision-maker should consider all available evidence, including relevant information from social media platforms. Such information will need to be evaluated in much the same way that other traditional sources of information are evaluated, but it should be considered as advancements in digitalization present an opportunity to personalize decision-making and care at the EoL.

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

References

1. Alonso SG, de la Torre Díez I, Zapiraín BG. Predictive, personalized, preventive and participatory (4P) medicine applied to telemedicine and eHealth in the literature. J Med Syst. 2019;43(5):140.
2. Jason C. Vanderbilt Health integrates end of life care plan into EHR. EHR Intelligence, December 4, 2020. https://www.ehrintelligence.com/news/vanderbilt-health-integrates-end-of-life-care-plan-into-ehr. Accessed April 26, 2021.
3. Yan B, Xu X, Chau PP, et al. Preferences for end-of-life care: a study protocol for a cross-sectional survey of Chinese frail elderly home residents in Hong Kong. BMJ Open. 2020;10(3):e033862.
4. Bhatia-Lin A, Boon-Dooley A, Roberts MK, et al. Ethical and regulatory considerations for using social media platforms to locate and track research participants. Am J Bioeth. 2019;19(6):47–61.
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