Lex children have chronic complex conditions (e.g., cardiovascular Cyclopamine site disease, congenital abnormalities), potential dependence on technology (e.g., tracheostomy, cerebral spinal fluid shunts), frequent inpatient admissions, parental administration of multiple medications, multiple specialists involved in care (Srivastava et al., 2005), and potentially an early death (Morris, 2009; MK-886 biological activity Ortenstrand et al., 2010). Decision-making for medically complex children begins at diagnosis and continues throughout the child’s life with each prior decision effecting the next decision (Toebbe et al., 2012). Decision-making for medically complex children may begin prenatally when fetal diagnostic and imaging studies provide information about a possible life-threatening condition that may elicit making a choice between whether to terminate or continue a pregnancy (Rempel et al., 2004). For others, the decision-making process does not begin until birth or at the time of a later diagnosis when it must be decided whether to once again initiate care that is life-sustaining and curative or opt for therapies that focus on alleviating distressing symptoms that are designated as palliative care (Grobman et al., 2010). Parents and healthcare providers (HCPs) of medically complex children also need to determine how aggressively to pursue potential therapies including both standard and experimental therapies. All decisions are complex and challenging for parents because some of the therapies inflict pain and shorten the duration of the child’s life (Sharman et al., 2005), all of which can profoundly impact parents and health care system resources (Michelson et al., 2009). In essence, the main decisions for medically complex children are often a matter of life or death, depending on which option is chosen. Regardless of the type of decision, parents work with HCPs to determine the optimal choice for the child. HCPs generally are the first to tell the parents that their child has a lifethreatening illness. Parental interactions with HCPs can range from limited information exchange to heavy reliance on HCPs information and advice in the decision-making process. Parents are reluctant for many reasons to accept a diagnosis or complication resulting from a life-threatening illness for their child (Giannini et al., 2008), but when parents and HCPs have an incongruent evaluation of the `best treatment’ for the child (usually in the case of neurological injury) (Verhagen et al., 2009), current customs, personal preferences and resources, and legal precedence may become central to decision-making about initiating lifesupport or withdrawing life-support measures. Whether parents or HCPs are primarily responsible for initiating life-support or withdrawal of life-support measures in a critical care setting varies significantly. For example in manyInt J Nurs Stud. Author manuscript; available in PMC 2015 September 01.AllenPageof the Pacific Rim countries (e.g., Hong Kong, Singapore, Malaysia, Japan, and Australia) the final decision-makers when parents and HCPs do not agree on the appropriate medical interventions for a child, the physicians report they have the final say in treatment decisions (Martinez et al., 2005). In Northern/Western European countries, it is also custom to rely heavily on physicians to be the decision-makers when children are critically ill or have cancer; parents are informed of the decision and generally agreeing with the decision (Devictor and Latour, 2011).Lex children have chronic complex conditions (e.g., cardiovascular disease, congenital abnormalities), potential dependence on technology (e.g., tracheostomy, cerebral spinal fluid shunts), frequent inpatient admissions, parental administration of multiple medications, multiple specialists involved in care (Srivastava et al., 2005), and potentially an early death (Morris, 2009; Ortenstrand et al., 2010). Decision-making for medically complex children begins at diagnosis and continues throughout the child’s life with each prior decision effecting the next decision (Toebbe et al., 2012). Decision-making for medically complex children may begin prenatally when fetal diagnostic and imaging studies provide information about a possible life-threatening condition that may elicit making a choice between whether to terminate or continue a pregnancy (Rempel et al., 2004). For others, the decision-making process does not begin until birth or at the time of a later diagnosis when it must be decided whether to once again initiate care that is life-sustaining and curative or opt for therapies that focus on alleviating distressing symptoms that are designated as palliative care (Grobman et al., 2010). Parents and healthcare providers (HCPs) of medically complex children also need to determine how aggressively to pursue potential therapies including both standard and experimental therapies. All decisions are complex and challenging for parents because some of the therapies inflict pain and shorten the duration of the child’s life (Sharman et al., 2005), all of which can profoundly impact parents and health care system resources (Michelson et al., 2009). In essence, the main decisions for medically complex children are often a matter of life or death, depending on which option is chosen. Regardless of the type of decision, parents work with HCPs to determine the optimal choice for the child. HCPs generally are the first to tell the parents that their child has a lifethreatening illness. Parental interactions with HCPs can range from limited information exchange to heavy reliance on HCPs information and advice in the decision-making process. Parents are reluctant for many reasons to accept a diagnosis or complication resulting from a life-threatening illness for their child (Giannini et al., 2008), but when parents and HCPs have an incongruent evaluation of the `best treatment’ for the child (usually in the case of neurological injury) (Verhagen et al., 2009), current customs, personal preferences and resources, and legal precedence may become central to decision-making about initiating lifesupport or withdrawing life-support measures. Whether parents or HCPs are primarily responsible for initiating life-support or withdrawal of life-support measures in a critical care setting varies significantly. For example in manyInt J Nurs Stud. Author manuscript; available in PMC 2015 September 01.AllenPageof the Pacific Rim countries (e.g., Hong Kong, Singapore, Malaysia, Japan, and Australia) the final decision-makers when parents and HCPs do not agree on the appropriate medical interventions for a child, the physicians report they have the final say in treatment decisions (Martinez et al., 2005). In Northern/Western European countries, it is also custom to rely heavily on physicians to be the decision-makers when children are critically ill or have cancer; parents are informed of the decision and generally agreeing with the decision (Devictor and Latour, 2011).
