Reena is a 13-year-old girl with febrile neutropenia who refused to be transferred to the high dependency unit (HDU) because the nurses in that ward are ‘mean and uncaring’.  Reena’s parents are keen for her to be transferred where additional care and support can be obtained immediately. Following a long consultation with Reena and her parents, the medical and nursing team respected Reena’s wishes and agreed a treatment plan if Reena’s condition was to deteriorate. 

Two hours later Reena called over the nurse-in-charge to state that she had changed her mind, and agreed to be transferred to the HDU to ‘satisfy her parent’s wishes’.

• Who is the primary decision-maker in this case?

Answer: In order to achieve the best healthcare outcomes, shared decision-making is the ideal as the process involves both children and their families in clarifying acceptable care and treatment options.

• What is your role as a student nurse?

Answer: As a student nurse your role is do what is in the best interests for the child.  To understand your own limitations, but to also have the confidence to share clinical information and the wishes of the child and their family when clinical decisions are being made.

Read the article ‘Children’s participation in decision-making: Balancing protection with shared decision-making using a situational perspective’ by Coyne and Harder (2011), accessible via http://journals.sagepub.com/doi/pdf/10.1177/1367493511406570

This article provides a synopsis of the research, which identifies reasons why adults wish to protect children and provides a summary of children’s competence to participate in decision-making.  Whilst reading the article consider the following:

• What are the possible barriers to shared situational decision-making?

Answer:

• adults’ instincts to protect children from distressing information
• the burden of decision-making for adults
• concerns over the child’s competence to participate
• child’s position in the three-way relationship between parent and health professional
• time constraints, child’s characteristics and the clinical status of the child.

•  What are the possible consequences for children or young people’s healthcare if they do not participate in shared decision-making?

Answer:

• have their wishes and feelings restricted or overridden by adults
• have information withheld or limited, restricting the child’s opportunities to participate in care
• become passive recipients of care
• have a missed opportunity to develop their skills of self-determination and decision-making which prepares them for adulthood.

The test for determining the best interests of a child has developed over time as new cases have been brought to court.  Thirty-five years ago, in the case of a child born with Down’s Syndrome who needed urgent surgery for an intestinal blockage, the court limited its consideration of the best interest test to the life expectancy of the child [Re B (a minor) 1981].  Thirty-two years later Baroness Hale of Richmond in Aintree University Hospitals NHS Foundation Trust v James [2013] asserted that in considering the best interests, decision-makers must look at the child’s welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question and try to put themselves in the place of the individual patient.

• What factors would you consider when determining the best interests of a child?

Answer:

• The ascertainable wishes and feelings of the child concerned considering their age and understanding
• The child’s physical, emotional and educational needs
• The likely effect of the treatment on the child
• Any harm which the child has suffered or is at risk of suffering, as a result of accepting or refusal of treatment

Joshua is a 5-month-old infant who has been admitted to your ward for observation following a diagnosis of bronchiolitis.  Currently his clinical observations are within normal parameters for his age, but his work of breathing has increased and the medical team are concerned he may deteriorate in the next few hours.  The mentor you are working with appears concerned about Joshua, advising you to monitor his observations every 30 minutes.  You ask your mentor about her decision-making process.

• Why do you think your mentor is concerned about Joshua?

Answer: Bronchiolitis can be a life-threatening illness; a severe form of the illness can rapidly develop into respiratory failure.  Infants are particularly susceptible as they have an immature immune system and the structure and function of their airways can result in obstruction from mucosal swelling or secretions.

• How do you determine the frequency of clinical observation monitoring for each child in your care?

Answer: As a student nurse, you would follow the guidance from your mentor who holds clinical accountability for the care of the child.  You may also take guidance from Trust guidelines and protocols.  In the absence of local guidelines, the Royal College of Nursing has published standards for assessing and measuring vital signs in infants, children and young people. See Royal College of Nursing (2013) Standards for Assessing, Measuring and Monitoring Vital Signs in Infants, Children and Young People. London:  Royal College of Nursing.

Now that you have read about two decision-making models, what factors can influence children or young people’s care-related decisions?

Answer:

• Knowledge and evidence-based practice
• Clinical experience
• Nursing intuition
• Nursing ethics
• The nurse–patient relationship with the child or young person and family
• The age and competence of the child or young person
• The professional role of the nurse
• Time constraints
• Organisational guidelines and culture