End-of-life decision-making for children with severe developmental disabilities

I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 49–50 (2016) 235–246 241
Table 2
Guidelines in EoLDM in each involved country.
United Kingdom—Consent to the withholding or withdrawal of treatment may be given by anyone who holds parental responsibility. However, if there
is parental opposition or a disagreement as to what is in the child’s or young person’s best interests, an application should be made to court for a
determination as to best interests. The High Court has overarching authority in decisions about children. When individuals ask for treatment that the
health care professional has not offered and which he or she considers not clinically appropriate for the patient, the professional is not obliged to
provide it a
United States—The decision to withhold or discontinue health care may be considered by providers in conjunction with the parents acting in the best
interests of the child b . In the small number of cases where agreement is not possible, physicians are not obligated to offer therapies that they believe
cannot achieve the goals of care. A process-based approach is recommended to resolve conflicts over end-of-life issues. Central to this process is
mediation by the hospital ethics committee c . If the ethics consultation process fails to resolve the dispute, the hospital must try to arrange transfer of
the patient to another physician or institute willing to give the treatment requested by the family. If no such provider can be found, the hospital and
physician may unilaterally withhold or withdraw therapy that has been determined to be futile d
Canada—Physicians are not obliged to provide treatments that would not be of benefit to the patient; however, unilateral physician decision-making is
not endorsed. If the substitute decision-makers insist on a course of treatment that the physician considers medically inappropriate, the physicianis
obliged to assist in finding a treatment team that will agree to treat according to the consent given. When all mediation attempts have failed, the
physician may apply to a judicial body to challenge the substitute decision-makers’ decision. This option should be considered only after alternative
methods of conflict resolution have been exhausted e
Australia—The senior treating clinician should not merely outline treatment options then delegate decision-making responsibility to families, but
rather they should make recommendations for management based on their understanding of the patient’s medical condition and prognosis, while
continuing to work with, and support, a family and reach a consensus decision. Where the process fails to bring a consensus about the appropriateness
of treatment limitation, resolution will require application to the Court f
a Larcher, V., Craig, F., Bhogal, K., Wilkinson, D., Brierley, J., Royal College of, P., & Child, H. (2015). Making decisions to limit treatment in life-limiting and
life-threatening conditions in children: A framework for practice. Archives of Disease in Childhood, 100 Suppl 2, s3-23.
b Eden, L. M., & Callister, L. C. (2010). Parent Involvement in End-of-Life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative
Review. Journal of Perinatal Education, 19, 29-39.
c Truog, R. D., Campbell, M. L., Curtis, J. R., Haas, C. E., Luce, J. M., & Rubenfeld, G. D., et al. & American Academy of Critical Care, M. (2008).
Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine. Critical Care
Medicine, 36, 953–963.
d Fine, R. L., & Mayo, T. W. (2003). Resolution of futility by due process: Early experience with the Texas Advance Directives Act. Annals of Internal Medicine,
138, 743-746
e Choong, K., Cupido, C., Nelson, E., Arnold, D. M., Burns, K., & Cook, D., et al. & Accademy. (2010). A framework for resolving disagreement during end of life
care in the critical care unit. Clinical & Investigative Medicine, 33, E240-253.
f
Office of the Chief Health Officer (2012). Guidelines for end-of life care and decision-making (pp. 1–17). Sydney: NSW Department of Health.
3.1. Involvement experienced by parents
Four studies investigated how parents experienced their involvement in the EoLDM process (Brotherton & Abbott, 2012;
Morrow et al., 2008; Reilly et al., 2010; Sharman et al., 2005). The degree of involvement ranged from parents being the sole
decision-maker to the physician being the sole decision-maker. The latter cases were described in more detail, and parents
indicated that the experience of not being included caused negative emotions (Brotherton & Abbott, 2012; Morrow et al.,
2008; Sharman et al., 2005).
Two qualitative studies described the experiences of parents who faced the decision about a gastrostomy placement to
achieve adequate nutritional intake for their child (Brotherton & Abbott, 2012; Morrow et al., 2008). In the first study, some
mothers identified their physician as the sole decision-maker while several other mothers described themselves as such,
even though, from a clinical perspective, they all appeared to be in the same situation: all of their children required enteral
tube feeding to achieve adequate nutritional intake (Brotherton & Abbott, 2012). These difference in experienced
involvement could be explained by the fact that in this study only the personal perspective of how much choice they received
from the physician was described. In the second study, which included parents of children with cerebral palsy, parents often
indicated that they felt their opinion was not considered important. Moreover, some parents indicated that they felt
pressured to accept the gastrostomy. They believed they were made to feel guilty or ashamed, particularly with regard to
their child’s nutritional status (Morrow et al., 2008). A similar feeling of pressure was described by some parents who felt
they had to accept an EoLD (Sharman et al., 2005).
In a study by Reilly et al. (2010), six couples who had lost a child with Down syndrome and a congenital heart condition
were interviewed. All couples mentioned that they had felt highly involved in their child’s care and in decisions regarding
their child’s medical treatment, but they did not specify the extent to which they had been involved in the EoLDM for their
child.
3.2. Involvement preferred by parents
The way in which parents preferred to be involved varied widely and seemed to be highly influenced by the type of
decisions. One study investigated whether parents’ preferences regarding EoLDM for their child were influenced by the
child’s disease characteristics. Child’s disease characteristics, such as diagnosis, the presence of chronic conditions or
previous hospital admissions, were not significantly associated with parents’ decision-making preferences (Madrigal et al.,
2012). Most parents included in this study preferred shared decision-making with their physician (40%) or (largely) making
the final decision on their own (41%). A still-sizeable minority of 19% preferred the physician to be the sole decision-maker.