In defence of passionate parents

Parent stories are central to family-centred care and Sickkids Hospital has woven parent stories into hospital staff education, principally through the excellent work of parents on the Family Advisory Committee but also through informal inclusion of parents like myself who approach the hospital about challenges and concerns. I wish more parents were involved but the reality is that sharing difficult stories is not easy and we all have families and busy lives. It is even harder for parents who have children in care to be involved in such parent presence. Not only can the needs of complex care kids be all consuming but it takes a special confidence and belief in the professionalism of Sickkids staff to speak publically about your child's care while they are still in care. The role of parent advisory is different than that of parent presence in that parents who volunteer for committees are expected to use their experience in the wider discussion but not to use the forum as a focus on their child. With Sasha's death, and having been offered numerous opportunities to speak about our experience, I can contribute to a family care group without talking about Sasha specifically. Naturally one of my interests, which is shared widely across the hospital, is that staff are educated about the difficult discussions regarding end of life.

One of the first questions I posed to myself before a presentation was when do I name a Sickkids staff member? It seemed difficult to focus on communication and interprofessional practise challenges without mentioning departments. The route I took was to celebrate what worked and share my concerns while only naming Sasha's primary physician. I did so in the context of deep appreciation for her tireless communication, my feeling that she got us and my knowledge that behind the scenes she was pulling the team together. So I mentioned her name while talking about issues having stated my appreciation for our primary physician's professionalism.

The reason for my question was the realization that Sickkids professionals cannot talk about other families due to strict rules of confidentiality and most staff find it inappropriate to speak negatively about the actions, perceived inaction or general 'bedside manner' of colleagues. The refusal to mention one family to another may prevent families from learning from other families going through similar experience, hence my interest in forums where parents support other parents and ways that Sickkids can advance this. But it is hard to argue with the general rule that patient-physician confidentiality is a sacred trust and it should be said that, informally, social workers sometimes do speak to both parents and thereby introduce them where they think this will be helpful. Some parents are so called parent ambassadors, giving other parents tours of the units. Staff unwillingness to discuss other staff is a different matter and may relate to staff concern about the accuracy of the hearsay or simply not wanting to rock the boat as it would be a rare physician who felt they had never made a mistake or had not grown in learning through experience.

One nurse in particular mentored me on this point when she invited me to participate in a communication forum and scheduled a phone conversation to orient me. During this call she explained who would be speaking and requested that I show up for the presentation prior to my own. I am grateful for this request as I heard of a study looking at families labeled "difficult parents" where in five out of seven cases the proximate characteristic leading to staff considering the parents difficult was an agonizing period of medical uncertainty about the child's condition. The presenter called this period one of "unresolvability" and a light went off in my head: we had experienced not days but weeks of uncertainty about what was causing Sasha's unexpected deterioration in ICU after her second cardiac surgery. So I began my talk, focused on difficult conversation moments, by telling the presenter that she had just helped me understand why we panicked, ramped up requests for information, adopted a vigilant tone with staff and increasingly worried about our daughter's care.

The nurse made a second request: please do not name Sickkids staff during your presentation and try to not name specific units or departments, for example, talk about ICU rather than name the specific ICU. She explained Sickkids staff are bound by confidentiality rules and she thought it appropriate for parents to equally respect the privacy of staff when I spoke in a public venue as the staff may not be present or if present may be uncomfortable responding directly. I agreed and since then have tried my best to not name names when talking about problems. I have mentioned names when I thank staff for supporting parents and family-centred care as I feel that is OK publicity. Should any staff request I remove them from this blog I would do so, though this has never happened. Not only did this nurse guide me on the unfairness of naming staff names but she stood beside me during the short presentation, facing her colleagues throughout, as if in her body language to offer me support. Moments like these can be transcendent in creating trust between parents and staff. So I feel deeply moved when I hear parent stories that do not echo this professionalism. When a child's care, in the minds of the parents, goes off the rails, all it takes is one deeply committed and caring individual to right the balance.

I realized later that the nurse's request is sound for more than reasons of parent and staff equality or basic courtesy. In a prior post I wrote about how sociologists have determined that people trying to figure out the cause of an event very typically emphasize the people and personalities involved, as opposed to the environment and systems at play. This is understandable because often people cannot see the systems at play while communication styles or the choice of words used by a physician or nurse or the absence, vagueness or lack of communication followup is 'in your face' so to speak. This is not to ignore staff who communicate poorly but simply to say, lets focus on the care issues and not focus on people and personal styles. The people may be the issue, I am not ruling that out, but when there is conflict, the hospital can bring in other staff such as social workers or in particularly difficult cases parents can bring in the Patient Representative to allow the focus to return to the best care for the child. One parent adviser said it simply in an educational lecture to staff: where there is conflict with parents, focus on the care issue, not the parent.

This is a long response to a comment posted on this blog that named a parent as "insane". I noticed when transcribing Ian Brown's presentation that he talks about how constant care amid great uncertainty and without adequate medical communication and support would drive any parent "insane". But I also return to that nurse and the communication workshop; when I entered the room, two senior nurses were engaged in a common, productive communication exercise where the audience lists pejorative words about parents and then translates them into affirmative words. So where the writer of the blog comment sees a "completely and utterly insane" parent who will "scream bloody murder", staff can choose to see a passionate, exercised and dedicated parent who is vocal and needs to be listened to. You say "Being afraid of parents makes it hard to treat their children." I completely agree. Why should staff be afraid? Why is there not a relationship of trust? Please listen to the parent, perhaps even say sorry it has taken us so long to figure out a long term care plan and let the focus return to the child and not the perception of the parent's behavour. Mistakes will happen, some families will feel ignored. The way to avoid lawsuits is open, empathetic communication. Reestablishing trust with an angry parent may not be easy but it is necessary for the good of the child as that parent will be caring for their child throughout their care plan with the hospital and interacting with hospital staff throughout. The labels "dangerous" or "insane", whether directed by staff to parents, by parents to staff or by parents to other parents, have no place in a hospital dedicated to advancing interprofessional family-centred practise.