Inspect guidelines that remove parental authority
By Cindy Hylton Rushton, DNSc, RN, FAAN,
Clinical Nurse Specialist in Ethics
Johns Hopkins Children’s Center, Baltimore
Consulting Editor, Medical Ethics Advisor
The Guidelines for Foregoing Life-Sustaining Treatment for Minor Patients developed by the Los Angeles County Bar and Medical Associations provide a framework for addressing the complex issues that surround pediatric end-of-life care. (See guidelines and story, Medical Ethics Advisor, September 1997.) The focus of the guidelines is on the process of decision making and the importance of clear and ongoing dialogue aimed at avoiding conflicts when possible and resolving them when they arise.
As a pediatric nurse and ethics committee member, I have been involved in these difficult cases. I understand and appreciate the complexities and challenges of developing useful guidelines. For this reason, I want to offer some additional insights for your consideration.
The guidelines state that the parental decisions should be honored unless there is "clear and convincing evidence" that the parents’ decision is contrary to the child’s best interest and is "outside the current range of treatment practices."
Implementation of the guidelines requires consideration, in advance, of these questions:
• What determines strong evidence that parents are not acting in the child’s best interest?
• Under what circumstances could clinicians be justified in disqualifying a parent as a decision maker and replacing him or her with a court-appointed guardian or surrogate?
• What threshold of certainty about the benefits and burdens of treatment will be necessary to support a conclusion that the proposed treatment will offer the child significant benefit?
• What standards and process will be used to determine current treatment practices?
The concepts of strong evidence and significant benefit may be ambiguous or disputed. Clinicians must commit to the communication process outlined to avoid invoking legal remedies when parents have legitimate and morally justifiable views the professional may not endorse.
Merely disagreeing with the parent’s conclusions is not sufficient justification for disqualification. Conflicts that cannot be resolved with enhanced communication and/or mediation may represent intractable value conflicts.
In determining "significant benefit," it is crucial for clinicians and ethics committees to distinguish between therapies that are clearly beneficial to the child and those that have uncertain benefit. Consider these examples:
• Jehovah’s Witness parents who refuse a life-saving blood transfusion in a clearly reversible condition.
• Parents who refuse chemotherapy or surgery for a child with metastatic disease.
As the degree of uncertainty regarding benefits to the child in terms of the quantity and quality of life increases, it is much more difficult ethically and, perhaps, legally to argue convincingly that the professional interpretation of the child’s best interest ought to trump the parental view. Clinicians must consider, and ethics committee members insist upon, reliable data. They must explore biases in interpreting prognostic data and values about life, death, and disability, and their own meaning of certainty thresholds.
Once facts and values are clarified, professionals should ask, "Does the parent(s)’ request fall within a morally acceptable range of options?" If it does, on what basis can it be argued that the parent(s) ought to be replaced as decision maker(s) for the child? Disqualification would require sufficient justification to demonstrate that the parent(s)’ view cannot be morally justified.
From a moral perspective, this change would require sufficient justification to support either the parent(s)’ or professionals’ viewpoint about the child’s best interest.
When parents and professionals disagree about the proper course of treatment, it may be because parents have been offered options the clinician would refuse to honor. If, for instance, the professional maintains that life-sustaining therapy should never be foregone in a particular case, he or she must explain this resolute perspective to the parent and include the option for them to obtain the opinion of another provider or transfer the patient to another facility.
In addition, physicians must disclose their perception of personal duty to report such a decision. In cases in which there is conflict about the interpretation of the child’s best interest or failure of parents to uphold their obligation as decision makers for their child, parents also must be aware of the health care professional’s legal requirements for reporting and how the health care professionals are interpreting that obligation in this case.
This disclosure need not be done in an adversarial way, although parents may question the commitment of professionals who respond this way. The worry is that clinicians who disagree with parents may pursue legal remedies prematurely or inappropriately.
Parents, in turn, may assume that the options they are offered are all equal without realizing undisclosed consequences.
Notification safeguards and the process outlined in the guidelines is essential to ensuring that professionals do not use the threat of reporting to coerce parents into agreeing to the physician’s recommendations.
As you implement these guidelines, continue ongoing dialogue. Ethics committee members can play a pivotal role in ensuring all professionals appreciate and consider both ethical and legal principles.
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