Social media platforms offer massive connective potential — recent estimates put the number of social users worldwide at more than 3.6 billion.1 For family members dealing with the progression of a terminally ill loved one, these networks often come with the promise of comfort, especially as pandemic pressures limit the availability of in-person connections.
But when is it worth sharing a loved one’s condition? When do the benefits outweigh the potential drawbacks, and how do family members know? While the answer is different for everyone in this situation, here are three common scenarios for sharing this information online.
When Loved Ones Give Their Permission
Before posting anything on social media, families should ask their loved one for permission. If they’re not able to consent, then permission is given by their proxy, if they’ve designated one via durable power of attorney (DPOA).
Understand that while sharing details on social media may offer cathartic benefits for those carrying the burden of emotional and financial care, patients may not want friends and family to see them in a declining state. As noted by recent research, however, social connections play a critical role in the emotional well-being of terminally ill patients, so it’s worth making the case to loved ones that making social media posts — especially if they’re able to interact using their own mobile device — can help improve their overall mood.2 Ultimately, however, the decision rests with them.
When Families Have All the Details About Their Loved One’s Condition
Once families have permission to share their condition on social media, it’s worth taking the time to make sure they have all the details about the illness itself, its prognosis and its likely progression. Here’s why: The interactive nature of social media posts naturally draws interest, meaning that once posts are made, friends and extended family will have questions. Although there’s no obligation to provide in-depth medical information, families want to speak confidently about what they know and what’s likely to happen so social connections can make their own preparations to reach out or say goodbye.
Families are also encouraged to speak with their loved one’s hospice provider. While it’s possible to research conditions and outcomes online, the sheer volume of online information can often be overwhelming and often either inaccurate or misleading. Hospice staff, meanwhile, can quickly access hospice software to provide more personalized details about a loved one’s illness.
When it Helps, not Hurts the Emotional State
Social media provides connection but can also drive conflict. In fact, social media sentiment analysis found that over the last five years, platforms have become considerably more negative.3 Positive interactions still outnumber negative ones, but there is the possibility that posting information about terminal illness may cause conflict among family members and friends about how patients are being cared for and what steps should be taken next. For example, some may argue for prolonging life as long as possible, while others may look to ease current suffering. For families already under stress from caring for loved ones, this can be a lot to take.
Once families have a patient’s permission and are equipped with the details, they can post when it feels comfortable. Cultivate interactions that help loved ones feel connected, and disregard the ones that don’t. Ideally, posts should help create meaningful social connections, not add more stress.
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1 Statista, “Number of Social Network Users Worldwide from 2017 to 2025,” Sept 10, 2021.
2 ResearchGate, “The Effect of Social and Existential Aspects During End of Life Care,” January 2016.
3 Mention, “Analysis of 11 Billion Mentions: Social Media is More Negative Than Ever,” March 27, 2018.