Nadine Lusney, BScN, RN, MN, CHPCN(C), Professional Practice Lead/ Clinical Nurse Specialist – Canuck Place Children’s Hospice, Vancouver, B.C. Nadine is an Advanced Practice Nurse with special interests in pediatric advance care planning, family partner engagement, neonatal population and practice oriented research.
Boss, R. D., Vo, H. H., Jabre, N. A., Shepard, J., Mercer, A., McDermott, A., Lanier, C. L., Ding, Y., Wilfond, B. S., & Henderson, C. M. (2023). Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation. PEC Innovation, 2, 100173.
Core concepts of person and family centred care acknowledge the importance of listening and understanding a child and their family’s values, beliefs, cultural backgrounds and knowledge to incorporate into care and support shared decision-making (Institute of Person and Family Centred Care, 2023). Initiating these value-based conversations and family participation in decision-making in the context of increasing medical complexity, a serious illness and the availability of advances in technology requires the marriage of relational skills and medical expertise to integrate a family’s values into the context of medical interventions. In my experience, there are very little specific structural supports for increasingly common interventions and advances in technology to support a clinician navigating this with families.
Boss’s (2023) pre/post cohort design study prompted my interest as it explored the feasibility and acceptability of utilizing the Home Values and Experiences Navigation Track (HomeVENT) framework to guide NICU and PICU families and clinicians at three pediatric academic medical centers faced with the choice of pediatric tracheostomy and home ventilation. The family intervention encouraged reflection of what long-term day-to-day experience might be with home ventilation through educational modules (www.family-reflections.com), question prompts and a value based assessment interview. For clinicians, the intervention offered a structured approach to a family team meeting to support sharing of treatment options and reviewing family’s context and values to reach a shared decision. The study was assessed for feasibility (time to complete) and acceptability (measured through interviews), both of which were favorable by clinicians and families.
What we know from practice and supported by the literature is an ongoing, structured, supportive, collaborative and shared discussion is ideal (Lotz et al., 2019; Orkin, 2020; Sidgwick, 2019). Unsurprisingly, usual care at all sites lacked a systematic approach to this practice and more children in the usual care group (14/15) receiving a tracheostomy than the intervention group (10/15).
The fragility of the study’s population was apparent as ten children (1/3rd) in the study died before hospital discharge (six usual care vs four intervention); however, sadly only half of the children in both groups had palliative care involved.
Although I was pleased to read a study involving value-based conversations and family focused education, the sequence of the intervention in the trajectory and care of the child seemed backwards. These children all had extended ICU stays, which leads me to believe they had countless opportunities for exploration of family values and home context, as well as palliative care involvement as fragility increased. The intervention education did involve exploring other options, but nonetheless tracheostomy and home ventilation appeared to be clear available options for all these families. In the context of the study, the treatment option of tracheostomy and home ventilation was first, then family education, and then exploring values in the context of treatment decisions. I suggest integrated value based conversation first. From an upstream thinking point of view, what if these medically fragile children had conversation seeking to elicit family values, wishes and beliefs upon admission into the ICU environment. The likely countless medical interventions or escalations would then provide opportunities to affirm illness understanding and put interventions within the context of the family’s values, beliefs and wishes—thus supporting shared decision making along the illness journey and possible earlier involvement of palliative care. Education can then be utilized in the context of ensuring informed decisions when needed for illness understanding. I would be interested to see a study from this standpoint and its ultimate impact to care decisions in the context of home ventilation and tracheostomy.
The above study demonstrates an intervention supportive of a shared decision-making structure – it encouraged value-based conversations to guide intervention decisions, but perhaps better served earlier in a child’s trajectory in a different order. With increasing medical complexity at the forefront, it is imperative to explore values, wishes and beliefs earlier, utilize structures, such as aspects of HomeVENT, encourage education and generally reflect on the treatment options in relation to a child and family’s home context and values to ensure the intervention is truly in the best interest of the child and family.
- Orkin, J.; Beaune, L.; Moore, C.; Weiser, N.; Arje, D.; Rapoport, A.; Netten, K.; Adams, S.; Cohen, E.; Amin, R. Toward an Understanding of Advance Care Planning in Children with Medical Complexity. Pediatrics 2020, 145, e20192241
- Sidgwick, P.; Fraser, J.; Fortune, P.-M.; McCulloch, R. Parallel Planning and the Paediatric Critical Care Patient. Arch. Dis. Child. 2019, 104, 994–99
- Lotz, J.D.; Daxer, M.; Jox, R.J.; Borasio, G.D.; Führer, M. “Hope for the Best, Prepare for the Worst”: A Qualitative Interview Study on Parents’ Needs and Fears in Pediatric Advance Care Planning. Palliat. Med. 2017, 31, 764–771.