Ethical Issues With Patient–Provider Interactions in an Evolving Social Media Landscape

John is a 3-year-old male born with severe congenital brain malformations. His mother, Jane, pursued life-prolonging interventions and he has subsequently had many hospitalizations, procedures, and surgeries. He is technology-dependent and has not met expected motor and cognitive milestones. The medical team believes that John only exhibits brainstem functioning and has recommended redirecting care on multiple occasions, which Jane has refused.

Sara is a pediatric resident on the team caring for John. She heard from other team members, who have known the family longer that, throughout John’s life, Jane has posted extensive details of his medical condition and hospitalizations across multiple social media platforms. Sara heard Jane has amassed hundreds of thousands of followers on these platforms and frequently solicits donations via crowdfunding sites, gift wish lists, and direct payment services apps. Sara’s colleagues also told her that Jane is a single parent, and these donations are her primary source of income. Sara has also heard that Jane has recorded the hospital staff without their consent.

Sara is considering looking at Jane’s social media. On the one hand, she wonders about the type and amount of information Jane shares and whether it violates John’s privacy. She is curious about what John’s life is like outside the hospital. She is also concerned that Jane’s dependence on social media for her income may inordinately influence her willingness to consider redirecting John’s care. On the other hand, she worries that viewing Jane’s social media could negatively affect her opinion of Jane and adversely impact the care she gives John. Sara’s institution’s policies prohibit anyone from recording conversations without all the parties’ consent and prohibit employees from posting protected health information and discourage employees from “friending” patients and families. The policies say little about viewing patients’ and families’ social media. What should Sara do?

‘Sharenting’ refers to the phenomenon of parents posting about their children online.⁷  It is sometimes used pejoratively to refer to the habitual posting of sensitive information about a child.⁸  Although commentators have raised concerns about the impact of sharenting on children, it remains a widespread, socially accepted practice that has carried over into health care.⁹ 

In her role as John’s physician, it seems that Sara should only look at Jane’s social media if doing so is relevant to John’s health care. For example, an old video or image could help Sara understand current symptoms or the trajectory of John’s disease. Even so, one might argue that Sara should not look surreptitiously but ask Jane to show her relevant posts. Given the risks of implicit and explicit bias, Sara should think about why she is considering looking at Jane’s social media and ask herself whether those goals can be met in other ways.

If Sara’s goal is to determine whether Jane’s posts violate John’s privacy, this hinges on how we understand John’s privacy rights. Unlike Sara, Jane is not legally prohibited from posting identifiable information about John. This doesn’t make Jane’s posting about him right, but there is no legal or regulatory prohibition against such posting. Social media platforms do not bar parents from posting about their children unless posts violate the platform’s terms of use.¹⁰ 

Jane may be violating John’s privacy in a moral sense. Parents have a moral obligation to protect their children’s privacy. This is partly on the basis of children’s interest in an open future and the individual preferences they form about what is shared about themselves online as they get older. We might think parents should err on the side of sharing very little information or only utilizing private platforms, where only approved “friends” or followers can view someone’s online content, until their child is old enough to form a preference.¹¹  Although Jane’s moral obligation to protect John’s privacy may be somewhat attenuated by John’s neurologic condition, and John may never know about his mom’s posts or form preferences regarding them, fundamental elements of this obligation remain.

So, we should ask: How important is John’s privacy in this case? And is this something Sara can and should do anything about? It’s not clear that Sara is the appropriate person, as John’s physician, to investigate potential violations of John’s privacy or the staff’s privacy if Jane is photographing or filming staff without consent. Sara might relay her concerns to the hospital’s risk management team, who could investigate. Although preventing Jane from posting about John may be beyond Sara’s professional obligations to her patient, Sara might still raise the issue with Jane. One can imagine a general pediatrician raising concerns about the benefits and risks of social media use with a parent if the pediatrician became aware that a parent was sharing sensitive information about their child online.

Even if John’s privacy is not at stake, and Jane’s posts will never harm him in a way that he can appreciate, Jane’s actions might still be problematic if she is posting falsehoods or perpetuating harmful stereotypes about people with John’s condition. However, this is a big if. Sharing their stories online may help families to feel heard and raise awareness about a particular condition or issue.¹²  Jane’s posts might help her online community understand what it is like to care for a child with a complex medical condition.

The team may worry that Jane is prolonging John’s life because she has become financially dependent on him. If so, they would need to show that Jane does not intrinsically value John’s life and is only using social media because she cannot otherwise support their family. If the team cannot show this, one might argue that the team owes Jane the benefit of the doubt. Parents’ motives for turning to social media and sharing details about their experiences in the health care system are not well explored.¹³  The child’s situation may be viewed by parents as an opportunity to obtain financial support for a range of purposes and with a range of motives.¹²  Social media is a source of income for some users, including influencers, creators of original, often sponsored, content on social media who exercise the power to affect the purchasing habits or other behavior and actions of people.^14,15  Although some may find this method of gaining financial support distasteful and worry about the values that influencer culture reflects, the financially motivated use of social media by the parents of chronically or critically ill children is not necessarily problematic. It is financially challenging to care for a child with a medically complex condition.¹⁶  The logistical challenges associated with caring for a hospitalized child can make it hard for caregivers to maintain a job.^17,18  Jane might be commended for finding a way to support her family amid the challenges of caring for a child with complex health care needs.

If Sara’s goal is to determine whether Jane’s vested interest in her online presence is influencing her decision-making, then this goal seems best served by speaking with Jane about these concerns. Sara should think carefully about her choice of words and how to frame her concerns to avoid damaging their therapeutic relationship. She might mention to Jane that she heard about her posts and ask if they might look at some together so that she can get a better sense of Jane’s experience. If Sara has a substantial concern about John’s welfare, the issue might be referred to social work. Ultimately, the effect of decisions on John should guide judgments about the appropriateness of treatment decisions.

It might be easier to care for John if Sara didn’t know about Jane’s online presence. For the tension in cases like John’s to resolve, we would have to live in a world where parents did not routinely post about their children online. Influencer culture and sponsored mommy bloggers would need to be a thing of the past. Such social norms are part of the broader social fabric that extends well beyond the walls of the hospital. They are hard, if not impossible, to shift at the bedside.

In my work as a parent consultant in an organization that works with families of children with disabilities, I have had the opportunity to work with many families in similar situations. The interaction between medical and educational professionals and parents is often fraught with tension, assumptions, and judgment. I think it is helpful for Sara, and any medical professional working with parents, to step back and consider the lens with which they are viewing the family. Sara has recently become familiar with John’s case and the intricacies of the situation. Much of her knowledge about the case comes from other team members with their own perceptions and biases about Jane based on their personal history, previous interactions with her, and their own values. Additionally, Sara has her own biases and work and life experiences that she is using to process this situation and evaluate Jane’s actions and decision-making.

It is concerning that Sara’s first inclination is to view Jane’s social media rather than having a direct conversation with her. This sets up a relationship dynamic that might be hard to overcome. If Sarah looks first, she may be misled by what she saw when Jane asks questions about her son’s care. Social media can be a great way to keep extended family informed, to gather information about uncommon diagnoses, and to get emotional and, yes, financial support to continue to fight and survive.¹²  It is, however, an incomplete picture of what is actually happening with a family and a child with a medical diagnosis.

Jane is a single mother. She has a right to reach out wherever she needs to for comfort and support. Many people follow families that have children going through cancer treatment, recovering from near drownings, being treated for severe burns, or receiving care for other life-changing diagnoses. We may buy t-shirts, donate through GoFundMe, or sponsor a team in a 5k to support the family. There is no expectation that we will have any say over how that money is used to support the child or that we, the public, will have any say in the parents’ medical decision-making. Likewise, in this case, Sara has no legal or ethical obligation or responsibility to know how Jane pays for her son’s treatments or her own gas or rent.

If Jane’s refusal to redirect John’s care seems so unusual and is not in his best interest, then the hospital has the same options that it does with other families: they can go to court, present a case that Jane’s parental rights should be removed, and then proceed on the basis of the outcome. They should not, however, assume that Jane does not have her son’s best interest at the forefront of her mind and is not making decisions that benefit him and their entire family, and that are in alignment with their cultural and religious beliefs.

The question of recording hospital personnel without permission is a different consideration. If it is against the law or hospital policy, it should be addressed as any violation of policy; Jane should be made aware of the policy and the consequences of violating it. If I were a medical professional working with Jane, I would continue to be professional in my interactions but also be aware that there is always the possibility that Jane or any other parent is recording the interaction.

More to the heart of the matter, though, Sara should communicate directly with Jane rather than assume malicious intent. If she recorded the previous conversations, why did she record them? Was she not feeling heard? Did she feel threatened by the hospital staff and that she needed to protect herself? Has anyone had a conversation with her about how she is holding up under the pressure of taking care of her son, paying her bills, and making pivotal decisions about his life and death? Often, parents are vilified and cast as adversaries in these conversations when, in reality, they are afraid, overwhelmed, and doing what they feel like they have to to survive.

Before considering viewing her social media, Sara should sit down with Jane and ask her to share her perspective. Keeping an open mind and being conscious of her biases during this conversation will hopefully help Sara immensely as a part of John’s medical team. It might also build a relationship with Jane that will help her understand Jane’s perspective about the need to redirect John’s care and give her more peace about Jane’s decision.

Digital natives, born after 1980, have been around social media for their whole lives.¹⁹  As a resident and a parent of a young child, Sara and Jane are more likely to be digital natives than Sara’s attending, hospital administrators, or professional leaders, and may perceive this case differently. Jane likely views her social media posting as providing for her family, raising awareness of her son’s condition, and creating community, whereas the medical team interprets the same activities as exploiting her son’s illness for personal gain. However, the team’s concerns may be influenced by biases against heavy social media users or influencers.²⁰  If Jane published a memoir or worked for a nonprofit that advocated for children with John’s illness, the team may perceive her differently because these activities are more respected. Generational differences also likely affect the lack of guidance Sara found from her institution’s policies because members of different generations use different social media platforms and interact with social media differently.²¹ 

Many organizations’ policies do not reflect the status of social media in our society. The American Academy of Pediatrics recommends pediatricians avoid friending patients to uphold relationship boundaries.²²  However, much of social media functions outside of discrete, 2-way “friendships.” For example, TikTok does not use friendship status to determine what to place in users’ feeds. Even sites like Facebook and Instagram suggest content for users, and therefore Jane’s posts could appear in Sara’s feeds without Sara seeking them out. Given the volume of views of Jane’s posts, it is unlikely she would be aware of Sara viewing her content. Additionally, Sara could view Jane’s content without allowing Jane to access her private content. One-way interactions complicate the recommendations and norms for connecting with patients and families on social media because they can still impact integral pillars of therapeutic relationships, like trust, empathy, and communication.²³ 

If Sara views Jane’s content and thinks Jane misrepresented a conversation, diagnosis, or treatment plan, Sara may lose trust in Jane. If she perceived Jane as using John to raise money, she might become less empathetic. Viewing Jane’s content may, however, give Sara more insight into the family’s life outside the hospital, which could help Sara empathize and better understand Jane’s perception of John’s quality of life. Life in the hospital is very different from the home routine for many children with medical complexity,²⁴  which may mean Sara is seeing John below his true baseline functioning. If Sara lost trust, she may become more defensive in her communication. Seeing how Jane comprehends and portrays John’s care could, on the other hand, create a shared understanding that could facilitate effective communication.

In all, Sara should consider her motivations before surreptitiously looking at Jane’s social media because she could more effectively achieve the aims identified in the case through other means. Sara could more effectively address concerns about Jane’s decision-making by talking with her attending and/or Jane about this. If this does not resolve her concerns, she could request an ethics consultation. She could escalate concerns about Jane recording employees through institution-appropriate mechanisms such as risk management or social work. Sara could learn more about John’s life by talking with Jane directly or asking her to show Sara videos or photos of John. She should try to give patients and families the benefit of the doubt and positively frame their potential motivations. She should establish consistent boundaries for herself about searching for patients or families on social media or looking at their content if it appears unsolicited in her feed.

Institutions and professional organizations should update their recommendations to better reflect the evolving realities of social media and go beyond only addressing staff not posting content that reflects poorly on the profession, violating patient confidentiality, or crossing professional boundaries. They should provide education about the potential negative effects of choosing to Google patients/families or seek out their social media and encourage boundary-setting. Institutions should, within the constraints of the Health Insurance Portability and Accountability Act, be prepared to address patients or parents with a large public following posting negative information about staff members or the institution. They should provide support and resources to employees who may be subject to negative posts. They should have clear policies regarding recording by patients, families, or staff, and effective enforcement mechanisms. As technology advances and it continues to become easier to record interactions discreetly, staff should always be conscious of how their statements may be perceived.

Sara discussed her concerns about Jane’s social media presence with her attending. They concluded that there was no clinical reason to view the material and that there was no tangible evidence that Jane was recording staff and posting the recording on social media. They discussed the positive reasons Jane could be engaged in social media, as well as the attending’s previous conversation with Jane about goals of care. The attending related that she believed that, although some disagreed with Jane’s decisions, she was making them on the basis of what she thought was in John’s best interest. This reassured Sara, who no longer felt a need to watch Jane’s videos. Several months later, Jane’s content appears in Sara’s feed, and she closed the video after recognizing what it was.

As social media continues to evolve, new ethical issues arise. Although there may be clinically appropriate reasons to view patients’ or their parents’ social media (eg, to assess changes in patients’ signs over time or appreciate their quality of life outside of the hospital), viewing is best done with patients and their families. They can provide context and correct potential misinterpretations. The case and the commentaries also highlight the risks of word of mouth and the importance of giving patients and their parents the benefit of the doubt. Social media may help parents meet important needs. Concerns are usually best addressed by talking with patients and parents directly. In the rare instances in which there is a concern for abuse or neglect, or violation of hospital policies, these issues should be referred to the individuals responsible for them.