A paradigm shift from paternalism
There has been a shift in the culture of decision-making in medicine. We are moving away from paternalistic decision-making, where healthcare professionals make decisions for patients, to a model of shared decision-making, in which healthcare professionals make decisions with patients.
In shared decision-making, the onus is on us, as healthcare professionals, to share the best available evidence with patients and their families. We should support them to consider all available options to make informed choices. Shared decision-making relies heavily on good communication skills; communication is at its core.
Shared decision-making has been conceptually linked with Elwyn’s evidence-based practice model. This model highlights the ethical imperative for sharing information with patients to reach a joint agreement for care. There are three steps: introduce choice; describe options; help patients explore preferences to make decisions.
The first, and most crucial, step to implementing shared decision-making is an increased awareness of what it entails.
Shared decision-making in paediatric practice
Decision-making in paediatrics can be complex. The rapidly evolving developmental context of a child impacts their ability to participate in health decisions. Shared decision-making becomes more collaborative when healthcare professionals, children or adolescents, and their families share information to work together to make treatment decisions. It is an essential component of family-centred care. There can, however, be unique barriers; multiple stakeholders, each with their own preferences, values and expected outcome, can pull in opposite directions. The principles guiding legislation and surrounding paediatric health decisions vary across organisations, states, provinces and even countries, further complicating a potentially complicated situation.
Factors influencing paediatric shared decision making
The Three Circle Model describes the dynamic interactions of the environmental frame and three factors: the healthcare professional/team, the patient/family, and the medical context. Each of these may hinder or support decision-making at several levels: the healthcare team, the family, and the organisation.
Caregiver factors are dynamic. Previous disease exacerbations can dramatically shift the focus of parental preference in shared decision-making. Dormant family dynamics can be activated, especially when they present in acute settings. There are also other important factors that we need to be aware of and sensitive to:
- Some cultural backgrounds lack the tradition of individuals making autonomous decisions
- Parents may be reluctant to disagree with their provider or fear being perceived as “difficult”
- The stigma associated with the diagnosis and cultural beliefs surrounding its aetiology may affect the shared decision-making process.
Families of children with complex medical conditions
12-year-old Josh has a complex medical background (GMFCS Level V, long-term ventilation, PEG feeding) with frequent admissions for chest infections. He presents with yellow secretions. Mum says he gets IV antibiotics whenever he gets a chest infection as he deteriorates rapidly. But then she adds, “however, he doesn’t look too bad today”. He looks comfortable on exam. A chest x-ray is requested.
Decision Type – Treatment: Route of antibiotic; IV or enteral
Environmental Framework – Admitted to ward for LTV patients. Availability of staff trained to look after LTV patients if admitted to a different ward.
Patient/Family – The family is very well experienced with Josh’s conditions. They have been fully involved with his 24-hour care at home with some respite periods.
Provider/Team – Competence and confidence of clinician in initiating shared decision-making for what’s best for Josh at present.
Medical Context – Are IV antibiotics indicated?
The decision is based both on evidence and common sense. Josh has difficult IV access and there are several unsuccessful attempts to secure a line. Although his family reports the use of IV antibiotics when he has a chest infection, he appears to be reasonably well in this admission. There is no increase in his oxygen requirement or ventilator settings. His chest x-ray does not demonstrate any focal consolidation. He has grown Pseudomonas in his secretions previously. Enteral ciprofloxacin via PEG is discussed, engaging the family’s preference. Josh is admitted: if there are any changes in his clinical state, escalation of care will be the next step.
Shared decision-making is especially important to parents of children with complex medical needs, who face multiple decisions around medical treatment in the acute setting. Many of these parents will have significant knowledge and experience about their child’s background and medical condition.
Clinicians assume that parents of children with complex medical needs have a better understanding of shared decision-making because of past hospitalisations and experiences with the system. This seemed true in a qualitative study by Hoang et al. However, Hoang’s team found that the majority of parents stated that they had never heard of shared decision-making, nor found it easy to participate in the decision-making process. The parents described the need for the effective communication of available options, education on medical information, and being actively listened to.
Josh’s mum agrees with the clinician and together they decide to admit him on PEG ciprofloxacin. He has regular chest physiotherapy. He goes home after 48 hours without the need for IV therapy during this admission.
Shared decision-making in acute settings
Many decisions in the emergency department would benefit from patient involvement. But time constraints, fear of a bad outcome, lack of follow-up, and clinical uncertainty are described as hindrances to shared decision-making in the ED. However, even though this setting has been considered by some less conducive to shared decision-making, there is no evidence to suggest that shared decision-making is not feasible in the ED. Skills in effective communication and relational competence are incredibly useful in the face of diagnostic uncertainty.
A qualitative analysis of adult patients’ perceptions of shared decision-making in the ED revealed that most patients want some degree of involvement in medical decision-making. A more proactive engagement of patients by clinicians is needed. This would not be far-fetched in paediatric practice. By facilitating family participation in decision-making, parents are supported whilst avoiding forcing sole responsibility onto them.
What are the benefits of shared decision-making?
3-year-old Mohammed presents to the emergency department at 2100hr with two generalised tonic-clonic febrile convulsions within a 2-hour period. He has been coryzal and off his solids for the preceding 24 hours. Clinical examination reveals inflamed tonsils and Mohammed has negative Kernig’s and Brudinkski’s signs. The ED doctor suggests blood tests to Mohammed’s parents.
Decision Type – Diagnosis: Risk stratification of complex febrile seizures and CNS infections
Environmental Framework – Level of acuity and business in the emergency department with pressure for quick discharge. Availability of bed and nursing staff for overnight observation
Patient/Family – Parents worried about further seizures. They have no experience with febrile convulsions. Could this be meningitis?
Provider/Team – Ability to acknowledge diagnostic uncertainty if present. Clinician’s experience in stratifying risk of serious infection from clinical assessment.
Medical Context – Will blood tests help me?
The decision made with Mohammed’s family is to observe overnight without blood tests. The issues discussed are: the distress caused by blood tests, non-specificity of blood tests and the low probability of CNS infection from clinical assessment. Mohammed’s parent agrees that blood tests can be deferred with observation as a preferable investigation.
Evidence shows that shared decision-making is desired by parents and families. Increased participation of families in decision-making reinforces trust, adherence, and satisfaction.
- Increased parental knowledge and satisfaction
- Decreased decisional conflict
- Improved quality of care, patient safety, and health outcomes
- Potential reduction in inappropriate investigations, and treatments
- Reduced costs to the healthcare system
- Reduced adverse events and complaints
Barriers and facilitators
Boland et al. conducted a systematic review of the barriers and facilitators of paediatric shared decision-making. This review was strengthened by the presence of multiple perspectives (i.e. healthcare professionals, parents, children, and observers).
“Patients need knowledge and power to participate in shared decision making – knowledge alone is insufficient and power is more difficult to attain”.
Improving shared decision-making in paediatric practice
Embedding shared decision-making in the medical and nursing curricula to promote its culture in clinical practice
Developing and evaluating targeted interventions for multidisciplinary teams and patients
A team-based approach to shared decision-making training, continuing education, and implementation
Evidence-based interventions specifically tailored to perceived and/or experienced barriers and facilitators by children, families, and healthcare professionals
Creating policies by decision-makers guided by local crucial factors to minimise barriers and support facilitators
Future research into the interrelationships of patients, healthcare professionals, medical context and the environmental frame to develop effective interventions
Shared decision-making is a fundamental component of safe, effective, and compassionate healthcare. Supporting and empowering children and families to make high-quality decisions that are consistent with their informed values and preferences can improve health outcomes. Understanding the barriers and facilitators influencing healthcare professionals, parents, and children’s abilities to use shared decision-making in clinical practice is essential.
Aarthun A, Akerjordet K. Parent participation in decision-making in health-care services for children: an integrative review. J Nurs Manag. 2014;22(2):177-91
Boland L, Graham ID, Légaré F, et al. Barriers and facilitators of pediatric shared decision-making: a systematic review. Implement Sci. 2019;14(1):7.
Boland L, Lawson ML, Graham ID, et al. Post-training Shared Decision Making Barriers and Facilitators for Pediatric Healthcare Providers: A Mixed-Methods Study. Acad Pediatr. 2019;19(1):118-129
Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med. 1999;49(5):651-61
Elwyn G, Frosch D, Thomson R, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361–1367.
Hoang K, Halpern-Felsher B, Brooks M, Blankenburg R. Shared Decision-making With Parents of Hospitalized Children: A Qualitative Analysis of Parents’ and Providers’ Perspectives. Hosp Pediatr. 2020;10(11):977-985
Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns. 2014;94(3):291-309
Joseph-Williams N, Lloyd A, Edwards A, et al. Implementing shared decision making in the NHS: lessons from the MAGIC programme. BMJ. 2017;357:j1744.
Légaré F, Ratté S, Gravel K, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions. Patient Educ Couns. 2008;73(3):526-35.
Parish O, Williams D, Odd D, Joseph-Williams N. Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions. Patient Educ Couns. 2021:S0738-3991(21)00579-6.
Rennke S, Yuan P, Monash B, et al. The SDM 3 Circle Model: A Literature Synthesis and Adaptation for Shared Decision Making in the Hospital. Journal of Hospital Medicine. 2017;12(12):1001-1008
Schoenfeld EM, Goff SL, Downs G, et al. A Qualitative Analysis of Patients’ Perceptions of Shared Decision Making in the Emergency Department: “Let Me Know I Have a Choice”. Acad Emerg Med. 2018;25(7):716-727.