How to approach advance care planning for children with serious illness

Advance care planning and talking about goals of care are often associated with older patients—but pediatric patients who have serious illnesses deserve to have these conversations as well. The Canadian Paediatric Society (CPS) recently released a position statement on this issue. The CPS recommends healthcare providers initiate discussions about goals of care and advance care planning rather than waiting for patients or their caregivers to do it. That’s not happening as much as it should right now; many healthcare providers assume that the patient and their family favour looking for a cure or living as long as possible. An international survey found that 45% of pediatric oncologists do not initiate these discussions; it might be even less common for children with chronic conditions where doctors can’t easily predict death. Read: New CPS statement on managing febrile infants disrupts usual management strategyWhen should this happen? Right now, these discussions most frequently happen when children and adolescents are admitted into intensive care and their death is impending. This timing can feel abrupt to families and force them to make decisions during a crisis. These conversations should start earlier in the disease course for children who have serious illnesses, CPS says, especially for those whose diseases may cause them to die earlier. That could be shortly after diagnosis or even before a child is born. There should be more than one conversation: Goals of care should be discussed again instead of assuming they have stayed the same as a disease progresses. Doctors should discuss goals again after significant changes to the patient's health or life events. The CPS statement includes signs that healthcare providers can look out for to see if patients or their caregivers might be ready for these conversations. These include worrying about the future, raising concerns about suffering, or not being able to do things they love anymore. It also offers advice on how healthcare providers can ask questions to judge if the family is ready, such as asking how they feel about their child’s quality of life. Read: Canadian Paediatric Society releases position statement on transgender and gender-diverse youthWho should be included in a discussion on goals of care and advanced care planning discussion? These conversions should include a healthcare provider the family has a good relationship with and the provider with primary responsibility for the child’s most significant medical issue. If possible, the healthcare provider with a good relationship with the family and patient should be involved in all the discussions over time. Patients should be invited to these conversations, even if they cannot make decisions about their goals. Families should watch their children’s nonverbal cues, especially for young or nonverbal children. The family or patient might also ask other extended family members, spiritual leaders or community members to join. Pediatric palliative care teams are experts in leading goals of care and advance care planning discussions and can facilitate them, even virtually. Critical care providers, who may have facilitated these conversations many times before, can also be helpful. Finally, language interpreters should attend if needed. Read: Canadian Paediatric Society releases position statement on gene-based drug therapyWhat should the group decide during these conversations? The main goal of these conversations is to have patients and their families think about what’s most important to them. They don’t have to lead to official decisions about care or advanced directives. They generally involve three steps. First, they should ensure the family and patient understand the prognosis and medical situation. As part of that, healthcare providers should answer questions, clear up misconceptions, and offer as much information as possible about uncertainties based on their professional judgment.Then, the family and patient can identify what matters most to them. Common priorities that can end up in competition are prolonging life, having a good quality of life, or comfort. Once goals are clear, the medical team can recommend a treatment plan that matches them. If patients or families are not ready to think about advance care decisions, healthcare providers should respect that decision (assuming urgent decisions aren’t needed). They should check in again in the future when the family and patient might be open to it. Read: Canadian Paediatric Society releases guidelines for detecting anxiety in kids and youthWhy is this important?Without this process, healthcare professionals might ask patients or their decision-makers to choose from treatments they don’t know enough about. When they know about the family's wishes, instead of offering a list of options, the healthcare team can use their expertise to recommend treatments based on the goals of care and explain how they connect to them. One survey of adolescents with cardiac disease found that 92% wanted to be told about a terminal prognosis (though only 43% of caregivers wanted their children to receive that information). In another, researchers presented a group of adolescents with metastatic cancer or pediatric human immunodeficiency virus infection with Five Wishes, an age-appropriate planning document. Ninety-five percent said they thought the document would be helpful. Another study looked at 114 parents who had children die from chronic complex conditions. It found that those who had advance care planning discussions were more likely to say they were prepared for the end of their child’s life, and to rate their child’s quality of life at that time as excellent. Those who had discussed family goals were also less likely to regret decisions during that time. As the CPS statement says, “The aim of any pediatric healthcare provider involved with complex care cases should be ‘to add life to the child’s years, not simply years to the child’s life.’”Read: Study shows significant risk of major drug-drug interactions in outpatient children

How to approach advance care planning for children with serious illness

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