Abstract
Aims: Both clinicians and parents are expected to make medical treatment decisions in the best interests of the child. Typically, the bio-ethical approach of clinicians involves the application of four principles outlined by Beauchamp and Childress.1 Parental ethical decision making has received much less attention and European research in particular is lacking. Understanding parental decision making is pivotal in advanced care planning, an important tool aiming to improve care for children with life-limiting conditions as engaging parents in these discussions can be challenging.
The aims of this investigation are:
1) To investigate which ethical values European parents use in medical treatment decision making
2) How parents employ their ethical values
3) How parental decision making fits with advanced care planning, in particular when deciding on treatment limitations
1 Beauchamp TL and Childress JF, Principles of Biomedical Ethics (6th ed, Oxford University Press, New York, 2009).
Methods: Systematic review and secondary analysis of qualitative research papers regarding parental experiences caring for children with life-limiting disorders in the Netherlands, Germany and England & Wales published between January 2010 and December 2020.
Results: Forty-three papers are included; 16 from England & Wales, 18 from the Netherlands and 9 from Germany. In the papers 731 children were discussed by 880 parents.
Parents in the three countries use the same 6 values for medical treatment decision making: protection of life, protection from suffering, being positive, aiming for normality, child deserving the best life, and altruism.
The parental ethical values are mainly in the context of the parental relationship with the ill child. As such, parental decision making can be understood within the Ethics of Care (EoC) framework.1 Within EoC the aim of ethical decision making is to nurture and preserve the caring relationship. Decisions about what is right and wrong depend on the particular circumstances at the time.
The difference between health care professionals principled decision making and parental contextual decision making explains some of the challenges clinicians experience in advanced care planning, in particular in decisions regarding treatment limitations.
Parents describe a reluctance to make specific decisions in advance and, if agreeing to treatment limitations only do so because they know that they can revoke the decision. Moreover, most parental values described above pull parents in the direction of prolonging life. Only actual (or expected) suffering leads parents to agree to treatment limitations. Consistent with this finding is that parents whose child experienced a prolonged PICU admission feel that not speaking about treatment limitations after their child recovered is a missed opportunity that could have prevented further intensive treatment.
1 Noddings N, Caring: A Relational Approach to Ethics & Moral Education (2013), http://site.ebrary.com/id/10745983.
Conclusion: Parental ethical decision making is contextual rather than based on principles. It is important to take this into account when engaging parents in discussions regarding treatment limitations.
The aims of this investigation are:
1) To investigate which ethical values European parents use in medical treatment decision making
2) How parents employ their ethical values
3) How parental decision making fits with advanced care planning, in particular when deciding on treatment limitations
1 Beauchamp TL and Childress JF, Principles of Biomedical Ethics (6th ed, Oxford University Press, New York, 2009).
Methods: Systematic review and secondary analysis of qualitative research papers regarding parental experiences caring for children with life-limiting disorders in the Netherlands, Germany and England & Wales published between January 2010 and December 2020.
Results: Forty-three papers are included; 16 from England & Wales, 18 from the Netherlands and 9 from Germany. In the papers 731 children were discussed by 880 parents.
Parents in the three countries use the same 6 values for medical treatment decision making: protection of life, protection from suffering, being positive, aiming for normality, child deserving the best life, and altruism.
The parental ethical values are mainly in the context of the parental relationship with the ill child. As such, parental decision making can be understood within the Ethics of Care (EoC) framework.1 Within EoC the aim of ethical decision making is to nurture and preserve the caring relationship. Decisions about what is right and wrong depend on the particular circumstances at the time.
The difference between health care professionals principled decision making and parental contextual decision making explains some of the challenges clinicians experience in advanced care planning, in particular in decisions regarding treatment limitations.
Parents describe a reluctance to make specific decisions in advance and, if agreeing to treatment limitations only do so because they know that they can revoke the decision. Moreover, most parental values described above pull parents in the direction of prolonging life. Only actual (or expected) suffering leads parents to agree to treatment limitations. Consistent with this finding is that parents whose child experienced a prolonged PICU admission feel that not speaking about treatment limitations after their child recovered is a missed opportunity that could have prevented further intensive treatment.
1 Noddings N, Caring: A Relational Approach to Ethics & Moral Education (2013), http://site.ebrary.com/id/10745983.
Conclusion: Parental ethical decision making is contextual rather than based on principles. It is important to take this into account when engaging parents in discussions regarding treatment limitations.
| Original language | English |
|---|---|
| Pages (from-to) | A35-A36 |
| Number of pages | 2 |
| Journal | Archives of Disease in Childhood |
| Volume | 107 |
| Issue number | Supplement 2 |
| DOIs | |
| Publication status | Published - 17 Aug 2022 |