EthicsWalk addresses
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Re-Focusing on the Patient: Response to CaseConference #7
A twelve-year-old boy diagnosed with autism is the focus of CaseConference 7#. Or, the boy should be the focus. He is not. The case presentation, reader responses, and resolution focus on “supporting” everyone except the boy: his physician, his family, their religious advisors. Perhaps the assumption is that by addressing the various adults’ professional, emotional, and religious concerns, the boy will benefit, albeit indirectly.
The case is presented as a dilemma in supporting a physician’s “professional integrity” and assisting a hyper religious family. Where is empathy and concern for the mentally compromised child who is the patient? Where is commitment to discerning and advocating the patient’s best interests, which lies at the heart of “doing” bioethics?
The physician and chaplain permitted the family’s church leaders to shape the issue as “religion.” It is not. “Holy Mother” asserts no religious principle or eternal consequence for medical action or inaction. (unlike the Jehovah’s Witness cases where authorizing blood transfusions for one’s child is contrary to church teachings and done at the spiritual peril of both parent and child).
The real issue is competing diagnoses and treatment plans. The conflict is between the diagnosis and treatment plan of physicians and the diagnosis and treatment plan Holy Mother received in a vision. Religion is a red herring. As long as it swims, attention is diverted from the care – immediate and long term – of the patient.
The chaplain and physician should have named this for what it is: pressure on surrogate decision makers (the parents) to choose between differing opinions about the treatment of their child. Exploring the physician’s “personal source of spiritual strength and faith” is irrelevant to the medical validity of his refusal to perform contraindicated surgery. The parent’s coming to appreciate that his refusal is based on his commitment to their son’s best interests would be highly relevant.
This case is ripe for a bioethics consult and/or bioethics mediation by professionals trained to perform these services.[1] An ethicist would re-establish focus on the patient, reframe the issues. He or she would articulate the applicable ethical principles: nonmaleficence – not performing medically contraindicated surgery; beneficence – working through and resolving the diagnosis and treatment conflict with the parents rather than passing the child on to another medical specialist; respect for the patient’s personhood and the surrogate decisions maker’s (parents) dilemma in discerning the patient’s best interest; justice – not permitting medical staff and resources to be hijacked and squandered by a parallel treatment modality however well meaning its proponents.
Both the ethics consult and mediation process would interpret for the family the medically accepted treatment norms and best practice standards. Each process would engage them and their supporters in finding space within the norms and practices to realize their hopes and beliefs – but not to the detriment of the patient.
I welcome any comments you might want to submit in response to these articles.
[1] A bioethics mediator would probably meet separately with the medical staff, the chaplain, the family, the Holy Mother with priest, and perhaps the patient. In addition to listening to each perspective, the mediator would, as appropriate, provide education around medical facts about autism, relevant best practice standards, ethical principles, laws regarding child protection requirements (obtaining a medical guardian ad litim might be relevant), and convey to all the sense that each person’s position is informed by their interest in the child’s well being. After these individual meetings, the mediator would likely assemble the entire group to focus on their common commitment to the boy’s immediate and long-term well being. The process of identifying the common interest frequently permits softening of conflicting positions and acceptance of specific, if somewhat modified, medical recommendations.
Anne Underwood has an undergraduate
degree in religious studies, a
master’s degree in rural sociology
and a mid-life law degree obtained
after working over a decade as
a college administrator. She has
mediated for the Maine family courts
since 1983. Currently she serves
as an advisor to the ethics commissions
of ACPE, APC, the CCAR (Central
Conference of American Rabbis),
and NAJC, and consults with a variety
of Protestant faith communities
on issues of power, fair process,
and congregational conflict management.
Her articles on mediation and restorative
justice have appeared in the ACPE
News, The APC News and on the ACPE
web site. Articles on clergy accountability
and judicatory processes are published
by the Alban Institute and The
Journal on Religion and Abuse.
A
chapter, “Clergy Sexual Misconduct:
A Justice Issue,” appears in Body
and Soul: Rethinking Sexuality
as Justice-Love
, Marvin Ellison
and Sylvia Thorson-Smith, editors,
The Pilgrim Press, 2003.
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