Keys to Addressing Ethical, Moral Distress in Pediatric Hospice

Hospices may be under-prepared to navigate the complexities in end-of-life decisions among terminally ill children, as the ethical and moral considerations related to patient autonomy are vastly different for pediatric populations compared to adults.

Ethical principles of autonomy vary in pediatric populations due to a number of factors, including a child’s age, developmental stage, cognitive capacity and their spiritual background and beliefs, according to Christy Torkildson, director at the Children’s Hospice and Palliative Care Coalition of California.

“The definition for respect for the person takes into account the ethical principles of autonomy where patients can make their own decisions and self-determination is very different in the pediatric population not only due to age and developmental stages, which leads to their capacity, but also legally,” Torkildson said at the National Hospice and Palliative Care Organization’s (NHPCO) Virtual Interdisciplinary Conference.


Regulatory and policy changes at federal and state levels have also posed challenging ethical considerations in the provision of pediatric hospice care, Torkildson added. The multitude of factors has pediatric hospice providers facing unique ethical concerns, she stated.

“Often, we are faced with unique circumstances in pediatric populations,” Torkildson said. “We have an increasing population of children with medically complex conditions. In the current political climate, the pediatric population may face new and increasing ethical issues. We see an increased mobility in families seeking medical care, often due to the political climate in their own state. All of these can impact the providers taking care of these children being faced with these situations … which can lead to increased moral distress.”

State regulations have been in flux when it comes to the reproductive health laws and the implementation of pediatric hospice and palliative programming. Legislation has cropped up in states such as Connecticut, New Jersey and Illinois proposing the development of dedicated pediatric hospice and palliative care programs with both private insurer and Medicaid reimbursement routes.


Awareness around varying state regulations and their impacts on pediatric populations and their families is an important part of providing hospice through an ethical lens, according to Rebekah Halpern, physician assistant at Children’s Hospital Los Angeles, said during the conference.

Consequently, providers can walk a “fine line” between legal considerations and patient autonomy during goals-of-care conversations with families, Halpern indicated.

“We need to be aware of state-specific legal regulations that may come into play,” Halpern said during the conference. “This can be very tricky and a fine line to walk because you have some legal implications … especially if you’re looking at the principle of autonomy. Some of the ethical issues facing pediatric patients [are] changing in our society today. There’s recognition of children’s rights [and] granting children the right to consent and assent to high-benefit, low-risk treatment when their parents are not available.”

Pediatric hospice providers need a firm grasp of understanding when it comes to ethical principles related to patient autonomy and their abilities in self-determination and making their own health care decisions, Torkildson stated. Multiple family members may be involved in a child’s decision-making process, along with many different care providers weighing in as well, she added.

Decisions on what is best for a patient’s care involve those around quality of life, pain and symptom management and disease trajectory, all factors that look much different in children versus seniors, according to Torkildson. Taking an “ethical lens” around issues such as length of stay, allocation of resources and other considerations can give way to moral distress among providers, she said.

Complicating ethical considerations is a lack of a sufficient hospice workforce trained to provide pediatric end-of-life care to growing patient populations in need of support, Torkildson stated.

Only 14% of hospice physicians serving adult patients were also certified in pediatric care, and only 13% of nurses, according to a 2023 NHPCO report.

Less than half (48%) of nearly 500 hospice and palliative care organizations surveyed in the NHPCO report indicated that they had a dedicated pediatric team. More than one-third (35.7%) of respondents indicated that a lack of trained personnel was a leading barrier to expanded programs, with 16.9% citing discomfort in caring for pediatric populations a second largest leading reason.

“The number one barrier to hospice and palliative care was lack of specialized education and training. Second to that was comfort taking care of pediatric patients,” Torkildson said. “Many hospices who used to take care of pediatric patients have discontinued taking pediatric patients.”

As far as complex conditions and demand, more than 40% of school-aged children and adolescents have at least one chronic physical or behavioral health condition in the United States, the U.S. Centers for Disease Control and Prevention (CDC) reported .

Nearly 1-in-5 (19.4%) of children nationwide had a special health care need from 2019 to 2020, according to the U.S. Census Bureau’s National Survey of Children’s Health. This number represented 14.1 million children with life expectancies of 12 months or less.

Increased staff training, family education and care collaboration are some of the main keys to improved decision-making in pediatric hospice care, according to Halpern.

Having a code of ethics policy in place is important to helping providers navigate difficult conversations with a patient and their family, she stated. Having a formalized way to address moral distress and ethical concerns can help increase both patient and staff satisfaction, Halpern stated.

Optimizing the quality of life for patients, families and caregivers includes a collaborative effort among various providers involved in pediatric care, including primary and hospice interdisciplinary teams, she added. Primary pediatric providers have an established relationship of trust built up with families and help educate them on their end-of-life care options as their illnesses progress, said Halpern.

“We need collaboration and communication with that primary medical team,” Halpern said. “When there is a collision between medical reality and the family’s spiritual, ethical and moral values, we have to look at our own feelings and those become factors that ethically influence our own actions. A core code of ethics for your organization can help you to meet the hospice and palliative care news of your patients and their families, and of staff to act truthfully, honestly and fairly to all concerned.”

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