The ethical issues central to this case include:

1) Balancing the medical principles of autonomy & non-maleficence/beneficence:

Balancing the autonomy of the parents and the efforts of the medical system to get to the truth of dead child’s cause of death so that premature death (beneficence/nonmaleficence) can be prevented in the living infant.

2) Duties of the forensic pathologist:

The pathologist’s fundamental ethical duties are in conflict. These duties include a duty to the profession, society and the family.

Follow-up questions:

• What are the medical ethical principles that this case raises?

• What strikes you the most about this case?

• The cause of death in the decedent is unknown and will not bet determined for months. The living infant’s prognosis is uncertain. There is a family history of relevant sudden and unexpected death.

• The problem is subacute. Death is not reversible, however, the medical anomalies of the living infant could potentially be reversible.

• The goals for the forensic pathologist is to determine the truth about what caused the death in the dead twin and what we can learn from his death in order to prevent the premature death in his twin brother.

• The probabilities of success are 0 to 100%. If the father does not agree to retain the organ, than the options are:

  • Retain the body until expert is available and return organ to body. This would result in delay of the release of the body.

  • Obtain a court order to retain the organ.

  • Have the pathologist explain the rational as the pathologist is the most knowledgeable.

  • Try a staged approach by examining more of the organ and obtaining more information to convey to parents.

  • Do not retain the organ but retain sufficient tissue of the organ so that some information can be obtained.

  • Retain organ for a short period of time and get a rush consult.

• The benefit of retaining the organ is that other subtle anomalies can be recognized and this can provide clinical information to manage the living twin.

• The harms of retaining the organ is that there may be interpretive error and there is no anomaly, the parents are bereaved and concerned for other son and this request is an added burden, loss of confidence in a system that already does not require consent to perform an autopsy and the parents may not want to know the results of the autopsy because it could mean the parents have passed on a genetic mutation that resulted in the death of their son and possible risk factor of a familial death in the parents.

  Follow-up questions:

• What/who are the duties of the forensic pathologist?

• What is the nature of these duties?

• What is the ethical and legal difference between retaining an entire organ (30 g) versus retaining 2/3 of the organ (20 g)?

• Is the living twin a child in need of protection because of the parent’s decision about their dead child organ jeopardizes the living twin’s life?

• Does the pathologists and coroner’s code of ethics assist in this ethical dilemma?

• Are the substitute decision makers/next of kin capable of making a decision and are the properly informed?

• Does the mission, vision and values of the death investigation system assist in this ethical dilemma?

• Forensic pathologist: prefer retaining the organ until expert consultation is performed.

• Coroner: requires agreement of both parents. Cannot impose a course of action on the parents.

• Clinicians: neutral but want information from the decedent that could assist their direction in the living twin so that they are utilizing resources appropriately and not cause harm by over investigating the living infant

• Mother: retaining the organ is acceptable

• Father: does not want the organ retained

  • The parents function as the substitute decision maker for the living child and next of kin for the infant that has died. There is concern that the father not allowing proper assessment of the organ of the dead infant may not be in the best interests of the living twin.

• Dead & Living twins are too young to assent or express prior interests.

• Obtaining informed consent for organ retention from the parents is respecting the rights of the bereaved, in particular their autonomy, especially when there consent is not legally mandated for a medicolegal autopsy.

  Follow-up questions:

• Who are the involved individuals/Who are the individuals with standing?

The standard practice is to have an expert opinion and obtain consent for organ retention by the next of kin. The data that inform the decision is the relevant medicolegal Act, Alder Hey Inquiry, policy statement from the death investigation system and domestic law.

Follow-up questions:

• What is the standard medical practice regarding expert consultation?

• What does the medicolegal death investigation policy inform about the practice of organ retention?

There may be family, cultural or religious issues that are influencing the decisions. There prior sudden death in the family may have required a medicolegal autopsy and the information from that autopsy may not have been communicated to the family, leading to damage to the fiduciary relationship between the parents and the death investigation system. There are confidentiality concerns, in that if there is a familial genetic anomaly that explains the death in the infant that has dies this will speak to the remaining family members, including the father.

Follow-up questions:

• What concerns may the parents have about retaining the organ?

• What concerns does the medical team taking care of the living twin have?

• What is the paradox between the legal power of performing a medicolegal autopsy without consent and the policy requirement to obtain consent from the next of kin required for organ retention?

• What is the paradox between the dual roles the parents play as the next of kin for the dead twin versus the standard of best interests for the substitute decision maker for the living twin?