Table 2 List of positions with references to papers where positions and ethical principles are provided
From: Ethics and end-of-life in pediatric and neonatal ICUs: a systematic review of recommendations
Themes | Positions | Papers | Principles |
|---|---|---|---|
Patient related | All decisions should be focused on the best interests of the child. | Nonmaleficence | |
Child should receive honest information about their condition, and their opinion should be sought and taken into account. | Veracity [26] Fidelity [26] | ||
Ethical foundations for the decision-making process are the same in children with and without developmental disabilities. | Right to treatment [23] Dignity [24] Justice [29] | ||
Child’s psychological, physical and spiritual needs should be met. | Not explicitly linked to any ethical principle | ||
Every human being is unique, therefore different decisions may be taken in cases of identical diagnosis and prognosis. | Right to live own life [23] Right to optimal treatment [23] Proportionality [24] Singularity [29] | ||
Parents related | Parents must be informed about child’s diagnosis, prognosis, treatment options and decisions in an understandable way | Autonomy [29] Proportionality of treatment [24] Nonmaleficence [29] Veracity [26] Fidelity [26] | |
Parents’ wishes should be considered, and respected if in child’s best interest. | Autonomy [29] Nonmaleficence [25] Proportionality [24] | ||
Parent’s wishes may be disregarded if not in the best interest of the child | Dignity [28] Futility [29] | ||
Parents should be provided with psychological support | Not explicitly linked to any ethical principle | ||
Bereavement support should be offered to the family. | Not explicitly linked to any ethical principle | ||
Parents should be able to choose their level of involvement in the decision-making process. | Autonomy [29] | ||
Medical team related | Medical team (within the team itself) should engage in open and honest communication and discussions. | Proportionality [29] | |
Members of the medical team should be trained in issues pertaining to end-of-life | Beneficence [15] | ||
Personal views of the members of the medical team should not influence their decisions | Beneficence [15] | ||
Psychological support should be offered to the members off the medical team. | Not explicitly linked to any ethical principle | ||
Decision-making related | Conflicts between the medical team and the parents should be resolved. | Dignity [28] | |
Decisions to limit LST should be made within a medical team and with the involvement of parents, whose opinion cannot be decisive. | Beneficence [15, 23, 24, 26, 29] Proportionality [24] | ||
Treatment decisions should be noted in patient’s medical records. | Not explicitly linked to any ethical principle | ||
A second expert opinion should be sought in cases of unclear situations and to facilitate communication. | Not explicitly linked to any ethical principle | ||
Establishment of advanced care plans are recommended | Not explicitly linked to any ethical principle | ||
Legal framework must be respected while making decisions to limit LST. | Not explicitly linked to any ethical principle | ||
Physician’s primary responsibility is the child’s well-being. | Professional duty [23,24,25, 28, 29] Beneficence [23] Proportionality [24] | ||
In some situations, patients should be referred to other wards or institutions | Professional duty [26] | ||
Periodic assessments of the balance of benefits and losses resulting from the treatment should be made. | Professional duty [28] | ||
Treating physician bears the main responsibility for the final decision. | Not explicitly linked to any ethical principle | ||
The family must be allowed a delay from the point when the decision to limit LST was made until it is implemented | Nonmaleficence [25] | ||
LST must be provided and maintained in case of doubt about the efficacy of the treatment. | Proportionality [24] | ||
Allocation of resources should be fair, but not the deciding factor in decision-making. | Beneficence [15] | ||
In some situations, patients should not be admitted to the ICU. | Justice [24] | ||
Treatment options related | Optimal palliative care must be provided to the patient to ensure comfort. | Beneficence [15] | |
Pain and suffering of the child must be alleviated, even if it may hasten death. | Beneficence [29] | ||
Futile and disproportionate treatments should not be provided. | Proportionality of treatment [24, 29] Dignity [29] Nonmaleficence [29] | ||
Withholding and withdrawing of LST are morally equivalent. | Not explicitly linked to any ethical principle | ||
Deliberate hastening of patient’s death is never acceptable | Not explicitly linked to any ethical principle | ||
Artificial nutrition and hydration can be regarded as LST and may be limited. | Beneficence [16] | ||
Oral nutrition and hydration can be stopped if causing discomfort. | Not explicitly linked to any ethical principle | ||
Palliative sedation is permitted in cases of sever suffering and, otherwise, intractable symptoms. | Not explicitly linked to any ethical principle | ||
A decision to deliberately end the life of a newborn (DELN) is morally and legally permitted in cases of severe suffering that cannot be relieved by excellent palliative care including sedation. | [25] | Nonmaleficence [25] Beneficence [25] |