When someone is terminally ill, what is the right treatment course? Should treatment be stopped altogether? What is in the patient’s best interest? What role should medical professionals, including clinical ethicists, play in the decision-making process?
Such decisions can tear families apart, and the choices can confound politicians, policy makers and the public. In 2012, Massachusetts voters rejected a ballot question that would have allowed physician-assisted suicide for terminally ill patients. The initiative lost by 1 percent of the vote. Federal legislation would have provided Medicare reimbursement to physicians for counseling patients about living wills and end-of-life care, but the provision was dropped amid claims that it would create “death panels” that would judge whether a patient is “worthy” of care.
Publicly, most palliative care and end-of-life debates focus on the elderly, but the issues are especially complex and wrenching for children and teens facing severe, painful or life-threatening conditions. Children are at the beginning, not the end, of life, and the adults involved in medical decision-making may have conflicting interests and wishes.
How would the child’s “best interests” be determined in these scenarios?
• A 7 year-old girl with end‐stage cancer is admitted to the intensive care unit. Although imminent death is projected, the family believes that life is sacred and asks for full resuscitative measures.
• A newborn with Down syndrome requires open heart surgery. The parents question the treatment because the child is disabled.
While “best interest of the child” usually means prolonging life or improving quality of life, there is no standard definition, Franco Carnevale, RN, PhD, of McGill University told an audience at Boston Children’s Hospital recently. Drawing on his experience as a nurse, psychologist and clinical ethicist, he instead emphasized the importance of effective communication between doctors, patients and families.
“Optimizing communication can have the most profound impact on ethical decisions,” he said. Effective communication is “medically relevant and culturally important,” especially when delivered with a “tone of respect and empathy.” And it must be clear and explicit. Treatment options, risks and potential outcomes must be completely explained to all concerned. “Medical uncertainty is a problem for patients and families,” he stated.
Carnevale called on everyone involved in decision-making to focus on effective communication with children. Children have their own thoughts and wishes about their conditions and treatments, but too many times, those wishes are ignored or marginalized. “We underestimate children’s decision-making capacity,” he said. “Children are not incompetent. Children have meaningful moral viewpoints.”
Personal circumstances, cultural norms and religious practices can strongly influence medical decision-making. To work through pediatric palliative care scenarios, Carnevale recommended holding “ethics consultations” to identify issues, analyze choices and resolve conflicts. Clinical ethicists—acting as advisors, not decision makers—can help doctors, families and patients “sort out the moral worthiness of one option over another.”
Confronting end-of-life and palliative care decisions will always be difficult for patients, families and professionals. It’s likely that “best interests of the patient” will continue to be debated among voters, policy makers and elected officials because, simply put, there are no easy answers.
Ultimately, determining a child’s best interest is “not about finding right or wrong,” Carnevale said, “but muddling through very tragic situations.”