Merging Pediatric End-of-Life Care with Religious Directives
Allison Grady, MSN, Advanced Practice Nurse, Medical College of Wisconsin/Children's Hospital of Wisconsin
The death of a child is a situation that most health care providers and parents do not encounter on a regular basis. When parents are facing the withholding or withdrawal of life-sustaining interventions, research on this subject has consistently reported that it is a combination of medical expertise, parental wisdom, and faith that guides parents through this process. A literature review focusing on the role of religion in end-of-life decision making in a pediatric setting demonstrates that religion is an important factor in shaping values and priorities. In this context, religion is defined as a belief in a higher power(s) and a set of principles that inform behavior. The role of religion in pediatric end-of-life decision making is a prescient subject because religion is a topic that can inspire strong personal feelings which may need to be tempered in the health care setting. In addition, many people believe they understand faith traditions, but are uncomfortable talking about religion.
In the large, Midwestern, pediatric hospital where I work, the chaplain confirmed that the most common religion preference was Catholic and Lutheran. In addition to these identified preferences, there was also a large percentage of families (>25%) who did not identify with any particular tradition. It is unknown, however, how many of these families would claim that “faith” has a strong presence in their life. This nuance may go unexplored by providers because these families do not fit neatly into a pre-defined admission category. It is important, however, because research on end-of-life decision making reveals that parents most often desire a shared decision-making role with providers. Namely, families want to hear how medical decisions and recommendations are made. In turn, families want to share their concerns and opinions based on their knowledge of the patient as well as their values and belief systems, which may include religion. The conversation between providers and families must remain open to the possibility that religion informs—but does not dictate—care preferences. The ability for a provider to frame end-of-life discussions in the context of religious guidance and individual circumstances can help the family feel more confident in the providers; and, providers can learn more about the patient they are treating. Effective communication techniques include giving and receiving information; inquiring to families about what they believe to be important and listening to the answers; asking directly about the role of religion, faith, and spirituality. While a provider is not expected to be an expert in all religions, comprehensive care addresses the spiritual aspects of care.
This paper will provide an overview of Catholic and Lutheran end-of-life directives, and offer specific advice to providers for incorporating religion and spirituality into difficult treatment discussions.
The death of a child is a situation that most health care providers and parents do not encounter on a regular basis. When parents are facing the withholding or withdrawal of life-sustaining interventions, research on this subject has consistently reported that it is a combination of medical expertise, parental wisdom, and faith that guides parents through this process. A literature review focusing on the role of religion in end-of-life decision making in a pediatric setting demonstrates that religion is an important factor in shaping values and priorities. In this context, religion is defined as a belief in a higher power(s) and a set of principles that inform behavior. The role of religion in pediatric end-of-life decision making is a prescient subject because religion is a topic that can inspire strong personal feelings which may need to be tempered in the health care setting. In addition, many people believe they understand faith traditions, but are uncomfortable talking about religion.
In the large, Midwestern, pediatric hospital where I work, the chaplain confirmed that the most common religion preference was Catholic and Lutheran. In addition to these identified preferences, there was also a large percentage of families (>25%) who did not identify with any particular tradition. It is unknown, however, how many of these families would claim that “faith” has a strong presence in their life. This nuance may go unexplored by providers because these families do not fit neatly into a pre-defined admission category. It is important, however, because research on end-of-life decision making reveals that parents most often desire a shared decision-making role with providers. Namely, families want to hear how medical decisions and recommendations are made. In turn, families want to share their concerns and opinions based on their knowledge of the patient as well as their values and belief systems, which may include religion. The conversation between providers and families must remain open to the possibility that religion informs—but does not dictate—care preferences. The ability for a provider to frame end-of-life discussions in the context of religious guidance and individual circumstances can help the family feel more confident in the providers; and, providers can learn more about the patient they are treating. Effective communication techniques include giving and receiving information; inquiring to families about what they believe to be important and listening to the answers; asking directly about the role of religion, faith, and spirituality. While a provider is not expected to be an expert in all religions, comprehensive care addresses the spiritual aspects of care.
This paper will provide an overview of Catholic and Lutheran end-of-life directives, and offer specific advice to providers for incorporating religion and spirituality into difficult treatment discussions.