The Canadian Paediatric Society (CPS) is calling for provinces and territories to legally recognize advance care directives for minors who are very sick or dying.  In a position paper published last week the CPS states that: 

Medical and technological advances have resulted in higher survival rates in… children with complex health conditions, many of whom would not have survived previously… we know that rates are increasing. These children often require multiple interventions to maintain their health including surgical procedures, hospitalizations and home technological supports. With the complexity of these conditions, parents frequently face difficult decisions about which interventions should be performed on their child because some are accompanied by significant burdens. The potential for burden mandates health care providers to carefully counsel families and legal guardians, acknowledging the delicate balance between promoting survival and compromising quality of life. Our aim as paediatric health care providers should be ‘to add life to the child’s years, not simply years to the child’s life.’”

The CPS report further states that parents, doctors and society expect children to outlive their parents creating an ”instinct to protect children from harm (which) may lead to avoidance of difficult topics, even to the extent that some children, despite having adequate capacity to understand and cope with their condition, are excluded from discussions about the gravity of their illness.”

CPS recommends increased implementation of pediatric advanced care planning beyond the ICU, where it is currently largely limited, to ”any point following diagnosis of a life-limiting condition” stating that: “To discuss advance care planning only in acutely life-threatening situations may be discriminatory; opportunity would be limited to patients with conditions that result in episodes of critical illness before the preterminal phase.”

The report identifies ETHICAL ISSUES IN ADVANCE CARE PLANNING as follows:

The ethical principles that underlie advance care planning are the same as in other health care encounters – respect for autonomy, beneficence and nonmaleficence. Any treatment considered should be in respect to the anticipated benefits and burdens, and should be undertaken only when the benefits proportionately outweigh the burdens (16). Herein lies the challenge – to predict benefits and burdens within the complex contexts of uncertainty and varying values. Potential outcomes must be evaluated based on facts and values, which may be very subjective. As much as we use the phrase ‘family-centred care’, we can only fulfill this ideal by providing a comprehensive standard of care, which includes advance care planning.

Paediatric patients fall into one of three categories in terms of decision-making capacity – incapable of consent,  developing capacity for consent and fully capable of consent. The last category defines the mature minor, who is legally not an adult according to chronological age criteria, yet has the cognitive ability to consider treatment choices and alternatives and weigh the consequences. For minors who are either fully competent or have evolving capacity, the principle of respect for autonomy demands that we inform them, either so they can make their own health care decisions, or at least be aware of what is happening with their health. A recent Scandinavian study (17) found that one-fourth of parents regretted not talking about death with their child who was dying of cancer, suggesting that one of our responsibilities is to help parents address this issue. Providing information is consistent with the duty to be honest with our patients. We respect their dignity by only administering treatments that they have freely chosen and desire.

A family-centred approach, however, may be a double-edged sword if the patient and family members do not share the same goals. This potential for conflict is greatest in situations in which the minor is in the middle category – developing capacity for consent. Parents may consider themselves to know best, to the exclusion of the child or youth, and also expect others to accept their decisions without question. Health care professionals should be aware of differences in how burden is perceived, looking from the perspective of the child in isolation versus being embedded in a family unit. It may be difficult to separate the best interests of the child from those of their caregivers and extended family members. If the patient and family do not appear to be ready to address advance care planning, particularly when death is not imminent, respect for autonomy and parental authority includes the option of allowing them to refuse information and defer decision-making.

I know that many of you have had personal experiences with the Canadian healthcare system and its dealings with pediatric advanced directives, sharing your stories could be very educational for us all.

By Jennifer Miller, Bioethics International 2008 (c) Full report here