By Stacey Kusterbeck
As a long-term member of the ethics committee at Akron Children’s Hospital, Julie M. Aultman, PhD, noticed a shift in the types of consultations in which ethicists were engaged. Consults involved a wide range of issues, from end-of-life care to organizational ethics. Overall, cases were becoming more complex.
“Cases required not only critical ethical examination but also additional supportive resources at the hospital to offer care to patients, families, and the healthcare teams themselves,” reports Aultman, director of the medical ethics and humanities program at Northeast Ohio Medical University in Rootstown.
It was not just physicians requesting consults. A growing number of parents and non-attending practitioners were seeking advice from ethicists. “They wanted an opportunity to explain their situations to ethics consultation teams,” she reports. Aultman and colleagues wanted to know if data supported the changes they had observed. The researchers analyzed all of the 74 ethics consults that had been conducted at Akron Children’s in the 18-year time frame since the ethics consultation service had been implemented.1 Some key findings:
• There were few numbers of consults in a given year in the pediatric hospital, compared to adult settings, notes Aultman. Since 2015, the service averaged just six to eight formal consults per year. However, many of the consults required multiple interviews and family meetings.
• Since 2010, shared decision-making has come up frequently. “Thus, many of our ethics committee recommendations involved connecting medical teams and patients and their families in an effort to close any communication gaps,” says Aultman. In those consults, ethicists sought to acquire a deeper understanding of what was known about the child’s condition, what options for care were available, and what supportive resources could be offered.
• Almost half of consults (46%) came from the pediatric intensive care unit.
• Most consults were requested by attending physicians. Less than 25% of consults were called by non-physician healthcare providers, or by parents or legal guardians. However, this changed somewhat when the ethics committee grew in size. At that point, ethicists put clear processes and policies into place. “The committee had more of a vital presence and was viewed as a valuable asset for all families, patients, and providers,” explains Aultman.
• Questions about parental rights, hospital rights, and patients’ rights (particularly in cases involving decision-making capacity) were common reasons for consults.
• For some consults, the main issue was a lack of shared decision-making. Common factors were communication gaps, a poor understanding of cultural values, parental/guardian distrust of the medical community, and exclusion of capable adolescent patients in decision-making processes.
• Most (60%) consults involved ethical questions about decision-making capacity.
• Half of consults involved questions about refusing life-sustaining treatments.
• Actions taken by the ethics committee primarily involved providing recommendations, advice, or conflict resolution. “Most of the interpersonal conflicts in the consults involved treating teams, as opposed to the family,” notes Aultman.
• Moral distress has come up frequently in consults over the past decade.
• Since 2020, many consults have involved mental health dilemmas. Ethicists are being asked to help resolve cases involving self-harm behaviors and questions about suicidality. “Some consults involve patients not wanting to be discharged, often due to being more comfortable in the hospital than in home environments,” says Aultman. Other consults are requested because patients are unable to access long-term facilities due to waiting lists, finances, or lack of insurance coverage.
• In recent years, more ethics consults have involved guardianship disputes and securing reproductive health and gender-affirming care.
Overall, the study findings indicate the need for consistency in ethics consultation training and practices, says Aultman. Post-consultation evaluation approaches also are important to identify any trends that are occurring.
“We have a very robust palliative care team that we suspect has reduced the need for ethics consults,” observes Aultman. Palliative care specialists have expertise in bridging communication gaps and addressing value-based conflicts among providers and families or patients, particularly at the end of life.
However, there still is a strong demand for pediatric ethics consultation. “With the ever-changing landscape of healthcare, I personally do not see a reduction of need. We encourage more healthcare teams to reach out to ethics experts for advice and support in navigating ethical issues and dilemmas,” says Aultman.
“Since the study and post-pandemic, we are seeing a significant increase in the number of consults that are being requested by our families and medical teams,” reports Aultman. The ethics service currently gets 10 to 12 consult requests a year.
“Having a body of ethics experts, community members, and committee members with diverse medical backgrounds is critical for objective review of issues and dilemmas, policy development, and community education,” concludes Aultman.
Some pediatric ethics consults are requested because the clinical team disagrees with decisions being made by parents. For example, parents may request ongoing aggressive medical intervention for a critically ill child. “It is common for members of the bedside nursing team to feel a sense of powerlessness and distress at participating in interventions that they perceive as only perpetuating suffering,” reports Erica K. Salter, PhD, HEC-C, an associate professor of healthcare ethics and pediatrics at Saint Louis University.
Often, moral distress results from clinicians lacking the full picture of why certain decisions are made. “One way to help alleviate this distress is to facilitate the sharing of perspectives and reasons,” suggests Salter. For example, parents may insist on an invasive surgical intervention for a child with a short life expectancy (such as cardiothoracic surgeries for infants with trisomy 13 or trisomy 18).
“The purpose of these burdensome interventions can be difficult for the clinical team to understand if they cannot cure the underlying condition or significantly extend life,” says Salter. However, often these surgeries are pursued to achieve other goals, such as allowing a child to be discharged home to live among family. “A clearer understanding of the specific goals in a case might help clinicians participate in the child’s care with less distress,” says Salter. Ethics consultations can help facilitate this important communication.
Some clinicians still may disagree with the decisions being made. “But they will at least have a more complete understanding of why those decisions are being made,” says Salter. Ethicists can facilitate this by holding a group meeting. This gives various stakeholders an opportunity to share their perspective. It also can give clinicians experiencing moral distress the chance to express concerns.
“The field has yet to offer any validated interventions that significantly decrease the experience of moral distress. But there are several potential preventive measures that could be offered by a clinical ethics service toward this goal,” says Salter. Moral distress debriefings may be an effective tool. Members of the clinical team meet in a confidential environment to share perspectives and discuss the factors that caused them to experience moral distress.
“Important elements of a debriefing like this might include clarifying ground rules, such as no interruptions; normalizing the experience of moral conflict; and facilitating perspective-taking,” says Salter.
- Bosompim Y, Aultman J, Pope J. Specific trends in pediatric ethical decision-making: An 18-year review of ethics consultation cases in a pediatric hospital. HEC Forum 2024; Feb 28. doi: 10.1007/s10730-024-09524-7. [Online ahead of print].
