Karen Legrow, Critical Care Clinical Nurse Specialist, asked us to share Sasha's story to around 120 Sickkids staff engaged at the 'Principles and Practices of Collaborative Communication' day long education workshop organized by Karen and Pam Hubley, Associate Chief of Nursing, and sponsored by the Supporting and Strengthening Families Best Guidline Working Group.
The agenda noted: Collaborative care is a Sickkids priority. Evidence shows that it contributes to improved teamwork and health outcomes for children and families.
Karen supported me speaking about any aspects of our communication with individual staff or observations on general communication with teams and asked only that I identify only the role of the staff member and not their name. She also asks all participants to come to hear the prior presentation to increase the sharing of information and perhaps add specific continuity to the education process.
The first request lead me to think quite a bit about parents acting in a professional manner with staff (staff are bound by principles of patient confidentiality and professionalism that parents are perhaps not aware of). I am very thankful for the second request as this lead me to hear a presentation from Dr Tara Kennedy, at the Stan Cassidy Centre for Rehabilitation, that has significantly helped contextualize our communication issues.
Dr Kennedy's presentation was titled "He's bugging the heck out of me": The 'difficult patient' in pediatrics and reviewed a study of about 40 care situations where 7 were defined as presenting examples where staff considered the parents 'difficult'. She explained the method of observation and then provided a case study that highlighted the specific challenge posed to team-family communication by a protracted period where a specific diagnosis or cause could not be confirmed.
The study presents this lack of confirmation as introducing a status and period of "irresolvability". Five of the seven families identified by staff as difficult experienced this period of irresolvability.
As she was speaking a little lightbulb went off in my head. After a period of deep trust in the care and teams over 18 months, we experienced great distrust and frustration communicating with staff in the first two weeks of ICU when Sasha was deteriorating and we could not pin down the cause among the several complications she was facing. Every day our requests for information accelerated until it reached a point of conflict with a senior staff. This period was one of stress, fatigue, distrust and vigilance toward ICU staff.
We have always understood that the primary cause of our stress was Sasha's deteriorating health however the concept of "irresolvability" adds an important dimension. There were times when we wondered why staff were waiting to intervene and then wondered if we were being too 'pushy'. Admittedly there were moments when we also felt terrible about how many interventions Sasha was subjected to and the feeling, perhaps part and parcel of a time of "irresolvability", that Sasha's care felt like an ongoing experiment.
The breakdown of our earlier comfort and trust can be attributed not only to Sasha's deteriorating health but also to our inability to pinpoint the cause of the surprising downward cycle. The lesson for me is that doctors can identify a period of "irresolvabilty" as particularly challenging to families and staff and clearly explain to families what the plan is so that families do not interpret a necessary "wait and see" approach as avoidance based on their past actions. They can also verbalize that this is one of the most difficult times in a medical care program and that feelings of frustration, anger and grief are normal responses. This will allow everyone to focus on the medical problem and not the parent communication style.
A corollory is that for some parents the feeling of "irresolvability" may not end upon release from the ICU or eventually from that particular hospital visit. Parents of children with complex care needs often look ahead to an uncertain future and feelings of guilt, anger, fear and grief can surface repeatedly when new challenges crop up, when treatments do not seem to help or when the child faces another major procedure. Parents welcome schedules and the building of some certainty about their children's future but in some cases staff can honestly only promise to do their best at each step and communicate as the family wishes without knowing what the future holds or be able to definatively help parents end the feeling of "irresolvability". In such cases, where parents and children need to live with the reality of a long term uncertainly, the need for effective staff interprofessionalism and partnership with parents based on open, timely, empathetic and empowering communication is even greater.
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