Craig Renaldo is a 14-year old boy who was recently diagnosed with a right lower leg malignant vascular tumour. Staging investigations have been negative for distant metastases. Craig’s attending medical oncologist, Dr. Purvis, consults a pediatric orthopedic surgeon, Dr. Mendes, who recommends a below-knee amputation. Dr. Purvis concurs with this recommendation given the aggressive nature of the tumour and the lack of other effective treatments – chemotherapy and radiotherapy have had poor response rates in relevant clinical trials. Dr. Purvis estimates that Craig has a seventy percent chance of survival with the surgery and a twenty percent chance without it.
Craig grew up in the Jehovah’s Witness (JW) faith and has been very active in the JW youth community. For the last two years, he and his younger sister Stacy have been living with their maternal aunt and uncle due to the tragic death of their parents in a motor vehicle accident. Uncle Bob and Aunt Kay are strong adherents to their JW faith. Craig and Stacey have a twenty-year old sister, Jane, who is a college student. She left the JW faith community after the death of her parents.
Craig and his aunt and uncle participate in an informed consent process for the proposed surgery including a lengthy sit-down discussion with Dr. Purvis and Dr. Mendes and some other members of the health care team. At the end of this dialogue, Craig and his aunt and uncle, in full agreement, emphatically state that they will not consent to blood transfusion during the surgery due to their religious beliefs. Dr. Mendes indicates that he is unwilling to operate on Craig without such consent given the vascular nature of the tumour and the high likelihood that whole blood transfusions will be required.
The surgical resident contacts Jane who has not been permitted to see or speak to her siblings for the past two years due to her JW fellowship. She expresses concern for the welfare of her brother and is alarmed by the refusal of consent for blood transfusion. Jane strongly believes that blood should be transfused if it is absolutely necessary during the surgery.
The unit manager contacts Legal Services and the health district’s legal counsel, in turn, contacts the Children’s Aid Society (CAS). The CAS supervisor indicates an interest in being involved in health care decision-making in these circumstances. A formal clinical ethics consultation is arranged.
- What are your ‘gut’ responses to this scenario?
- What ethics principles and values are at play?
- Who should make this decision?
- If the decision is a substituted one, how should such a decision be made?
Some Values and Ethics Issues to Consider
- Substitute decision-making
- Spirituality and religious beliefs
- Patient-family relationships
- Respect for professional integrity
- Respect for patient autonomy
- Compliance with policy