What’s Best and Who Decides for Seriously Ill Infants? A Malaysian Perspective

Abstract

Pediatricians and parents have co-fiduciary obligations to decide on medical treatment for a child. When life-sustaining treatment is no longer beneficial in seriously ill infants, most pediatricians in Malaysia support parents in a shared decision-making process. Occasionally, it can be challenging to decide what is best, whose decisions to make, and how to navigate uncertainties, value conflicts, and social justice issues that arise. Some of the pediatric ethics themes in Malaysia include moral distress due to professional obligation, the moral significance of withdrawing versus withholding life-sustaining treatment, decision-making for infants with elusive diagnoses or prognostic uncertainties, and infants of forced migrants with sociopolitical barriers to care. Several cases will be described to illustrate these ethical issues, as well as the pediatric ethics framework and approaches that can be considered to decide what is best for these infants. Pediatricians feel obligated to do their best, treat every child and family the same, and feel morally distressed if unable to do so. They can consider gathering more information and perspectives and utilize these frameworks to consider what is best for a child. In moments of conflict, respectfully seeking opinions, values, and concerns from the family through open communication is crucial to resolving disagreements. Clinical ethics deliberation can provide clarity in challenging moments and suggest ethically acceptable options. Clinical ethics mediation can facilitate difficult conversations and bring resolutions and closure for stakeholders. Within these moral spaces, the responsibility of heavy decision-making can thus be shared and reflected upon.

Supplementary Information

The online version contains supplementary material available at 10.1007/s41649-024-00339-9.

Introduction

Pediatricians and parents have co-fiduciary obligations and go through a shared decision-making process to decide on medical treatment for a child (Katz and Webb 2017). When life-sustaining treatment is no longer beneficial for seriously ill children or infants, most pediatricians in Malaysia provide supportive decision-making for parents by facilitating the fulfillment of their goals according to decisions made and including palliative care at the end of life.

Occasionally, it can be challenging to decide what is best for seriously ill infants, whose decisions to make, and how to navigate the uncertainties, value conflicts, and social justice issues that arise. Pediatricians can consider ethical frameworks that consider prognosis, parental responsibility, and values and identify ethically permissible and medically feasible options for the child. Clinical ethics is part of care and helps seek clarity in ethically challenging moments and mediate difficult conversations. Clinical ethics consultation systematically addresses complex decision-making and ethical dilemmas in clinical practice by considering the clinical, legal, sociocultural, and individual values and weighing the moral significance of various options.

Through four cases received by the ethics team I led at a public specialist hospital, I illustrate here the challenges parents and managing teams faced when deciding for these infants. These cases have been de-identified for educational purposes with permissions sought from referring clinicians during the standard ethics consultation process (Tarzian and ASBH 2013). Some recurring ethical questions were as follows: Could informed parents lead in decision-making? What were the ethical principles and frameworks that have helped? Were there social justice issues or contextual features needing special consideration? In answering these questions, I suggest ways pediatricians could approach these challenging moments to decide for these infants.

Case 1: Mother Knows Best?

Adam, a three-year-old child with Wolf Hirschhorn Syndrome, had a bout of seizures after a one-year well period. He had ten admissions in the past, including an ICU stay, but had missed his follow-ups for some time. Adam was on the verge of discharge, and it seemed he would be okay for the next few months. Mom, Madam Hamidah, was described by the referring specialist as “intellectually incapable and not comprehending an advanced care plan for resuscitation.” During the interviews with the ethics team, the staff commented that Mom was reliable and brought him in when she felt things were “not right,” and her intuition was always correct. Two other children were not attending secondary school, their father had pancreatic cancer, and they barely survived on welfare assistance.

Further Information gathered during the Ethics Consultation Process

When the ethics team sat down with Mom for a conversation, she stuttered most of the time. However, she understood clearly from the experiences she had in the past. She felt much pain from the venepunctures performed on Adam and was terrified by the chest compression during his stay at the ICU. As for breathing support, her words were, “Buat la yang terbaik, doc,” or “Do your best, doc” — the exact words she conveyed to the managing team repeatedly, which they took as the problematic sentiment of “please go all out and ventilate him.” But best care was not what she meant. When probed further, she said, “If you think she’ll benefit from intubation, go ahead. Don’t do it if it won’t help. I don’t think I can make that call, doctor."

Some of the Ethical Reflections

During the referral, it initially seemed that the doctor and mother had opposing positions, but in fact, they shared the same interests in doing what was best for the child. In this case, the informed and experienced parent was more than capable of leading in decision-making and was happy for the managing to decide based on their best clinical judgment. The goals and expectations between the managing team and the family were finally aligned after ethics deliberation and facilitation.

Case 2: Surgery Out of the Question?

Baby Uma, a seven-day-old infant with a late diagnosis of oesophageal atresia and tracheoesophageal fistula — or “surgical TOF,” was born at a maternity center and presented to the emergency department with severe respiratory distress due to pneumonia. She was subsequently ventilated in the general ward and required a transfer and urgent surgery at a tertiary center. An ethics referral was made because Mom had refused surgery despite all the counseling done. The referring specialist stated in the ethics referral form, “Corrective surgery is feasible if done early,” “extubation or gastrotomy is not an option at this point,” “surgery will be followed by few weeks of NICU care to establish enteral feeding and ventilation, with potential complications that include aspiration pneumonia, leaking anastomosis, and esophageal strictures.” She asked, “Is it ethical to allow Mom’s refusal to surgery? Should we alert child protection services?”.

Further Information gathered during the Ethics Consultation Process

Madam Siti was an Indonesian single parent working as a cleaner in Malaysia without a work permit. She refused the surgery despite financial aid being offered by the NGOs to cover the surgical expenses and persistently requested to bring the child home. According to her distant cousin, who was residing in Malaysia, her family came from a rural region in Jawa, Indonesia, and was entirely opposed to any form of surgery. “Visiting the hospital is a rare phenomenon and considered regrettable.”

From a surgical point of view, the prognosis and outcome of an infant with oesophageal atresia who had presented late in such circumstances is not good. In a 10-year review of 47 infants with oesophageal atresia at a tertiary hospital in the northern region of Malaysia (Narasimman et al. 2013), the associated factors for a poorer outcome included weight, other congenital malformations, and perioperative pneumonia (p < 0.05). Overall, the mortality rate was 23% from pneumonia (36%), renal failure (18%), cardiac malformation (18%), and other congenital malformations (28%).

In the next few days, while waiting for Mom’s decision and a transfer to the tertiary hospital, Baby Uma deteriorated as her lung turned solid and white-out and needed advanced ventilatory support with HFOV. This evolving circumstance made her a poor candidate for a good surgical outcome or survival. A revision of the goals of care for comfort care was then made. Mom accepted the decision and spent the last moments with her baby.

Some of the Ethical Reflections

It is ethically required to provide emergency life-saving treatment to all infants, regardless of the social status of their parents. Baby J was resuscitated and managed adequately from the start, with the diagnosis made immediately. Urgent surgery was indicated to correct the underlying congenital anomaly, albeit with a smaller window of opportunity given the less-than-ideal condition the infant presented during the initial phase. Thus, parental discretion has a certain weight in this case because the prognosis given the presentation was uncertain, and the surgical risks and intensive care burdens were significant. A referral to the child protection service was not indicated and would be counterproductive. The ethics team listened and attended to the moral distress of the managing team and shared some of these recommendations. By the time the child deteriorated further, the prognosis and goals of care became more apparent—Mom and the managing team were finally aligned in their expectations and agreed on what was best next.

Case 3: Is the Heart the Only Thing to be Fixed?

Baby J had a simple transposition of the great arteries with a restricted atrial septal defect flow and poor circulatory mixing. An emergency balloon atrial septotomy (BAS) was needed to optimize mixing while waiting for a corrective surgery. Given that the parents were non-citizens, the primary team identified potential funds of RM60k for a corrective surgery. BAS would cost another RM20k. Eventually, the cardiac team agreed to come on-site for an emergency BAS. However, the Father eventually told both teams not to proceed with the emergency procedure because if there was a slight chance that his child might still die from the complex heart lesion or the corrective surgery later, it would be harder for them to accept the outcome when they had formed an attachment with him. He understood that the child would die without the emergency procedure. Cardio felt parents’ decisions should be respected and the child managed conservatively, “We shouldn’t be pushing too hard when it comes to infants of migrant families.” A few from the primary team were morally distressed and felt Baby J stood a good chance at survival. They lamented, “It is an operable heart lesion”, and “Is it ethical to follow what the father wants?” So, an ethics referral was made.

Further Information gathered during the Ethics Consultation Process

Father had been working in Malaysia for the past ten years as a “wireman,” and Mom had recently joined him. They and their sons, seven and three, lived in a small, rented room within a close-knit Myanmar Chin community, where they shared food when life was hard. The family struggled to pay rent and food, and the sons went to NGO classes and needed around RM 70–80 per month. On one of the nights, both parents came to the bedside, held Baby J, broke down, and sang to him in their language.

The few in the primary team who felt the parents’ decision should be respected expressed to the ethics team that infants with critical congenital heart disease have high burdens of intensive care overall with variable survival rates and long-term outcomes. There were three previous simple TGA cases this year in the same hospital; one passed away before BAS and one after BAS but before corrective surgery. The third one was still ventilated in the NICU and awaiting operative decisions, as it required extra surgical expertise from another cardiac center.

Infants with critical congenital heart disease, such as a simple transposition of the great arteries, benefit from early diagnosis and definitive corrective surgery. However, not much was reported on these children’s long-term quality of life. From a ten-year cohort of infants with critical congenital heart disease in a southern state of Malaysia (Mat Bah et al. 2018), the overall mortality rate was 35%. The median age at death was 2.7 months. The survival rate of this cohort was 90.4% (95% CI 89–91.8%) at one month, 69.3% (95% CI 67.2–71.4%) at one year, 63.4% (95% CI 61.1–65.7%) at five years, and 61.4% (95% CI 58.9–63.9%) at ten years. In this cohort, the mortality rate for infants with transposition of great arteries was 33%, of which their survival rates were 89% at one month, 67% at one year, and 64% at five years old.

A few days later, the father called the NICU and requested, “Mom wants to nurse the baby, and we want to bring him home.” Baby J was referred to the palliative care team and was discharged with an advance care and a follow-up plan.

Some of the Ethical Reflections

Putting aside long-term survival and quality of life, the short-term prognosis for an infant with simple transposition of great arteries can be uncertain in the region, as it depends on the availability of good cardiothoracic surgical and neonatal intensive care services. Nevertheless, the most important ethical consideration for Baby J was the potential long-term morbidities if they survived, the high social impact on the family, and an unknown quality of care and life for him due to their social circumstances. With the short and long-term prognostic uncertainties and significant impact on the family and Baby J, the parents’ decision was ethically acceptable if they had been adequately informed and understood the potential outcomes with the revised goals supported and facilitated by the managing teams.

The ethics team shared some of their recommendations. In moments of conflict, respectfully seeking opinions, values, and concerns from the family through open communication is crucial to resolving disagreements. The social circumstances of forced migrants who have been denied the right to healthcare and education should allow for a certain level of parental discretion in the decision-making process for a complex congenital heart disease. The social burdens should only be defined by these families. Any pressure for surgery or medical care must be done sensitively to avoid overpowering the already marginalized families. The ethics team also recommended community support for the family since their overall well-being had become a concern.

Case 4: How do we Move Out of a Status Quo?

Ash was a 32-weeker and seven months old now. She was ventilated since birth, floppy with poor respiratory effort, and had had several episodes of chest infections. A tracheostomy was inserted in the previous month. Her medical problems were chronic lung disease and central hypotonia with minimal responses to the environment. She was suspected to have CHOP syndrome. The other twin was well and discharged earlier. Ash’s DNA extraction and chromosome microarray taken at three months old would be ready in several months. The neurologist reported her MRI brain at one-month-old as normal.

Ash’s secretions remained copious and caused endotracheal tube and airway blockage. She needed constant suction and maximum medication for reflux and secretions. Ash collapsed with cardiac arrest twice and was counseled for “no active resuscitation” in the previous month. At the point of the family conference, she was ventilated with high settings and had a bad bronchospasm the same week. Due to an outbreak, parents had not been allowed to nurse the child in the NICU for the past two months. They had been called from home when she had an acute life-threatening event, but she would have recovered by the time they reached.

During the last conversation with the managing team, the parents agreed to revise the goals of care with a do-not-resuscitation order and no further escalation of ventilatory support. Feeding and other medications would be continued. Two weeks later, Mom expressed to the managing team that the maternal grandmother requested the team to refer Ash overseas for further care.

Further Information gathered during Ethics Consultation Process

With Father’s suggestion, the managing team met with both sides of the grandparents in the presence of the ethics team. The questions posed in the ethics referral include whether parents could defer their rights to the grandparents and whether revising the goals of care was ethical when the diagnosis is elusive. During the family conference, while the maternal grandparents were hoping for a second opinion, the paternal grandparents were emotional about how Ash had suffered for all these months and was neurologically still stunted. The managing team explained that the definitive genetic diagnosis for Ash remained elusive. He had been dependent on life-sustaining treatment with minimal progress or response. The managing team made the exceptional allowance for grandparents to visit Ash for the next few days, and they finally came to terms. Ash passed away two days later when he was desaturated and was provided comfort care.

Some of the Ethical Reflections

The burden of care was high as Ash was ventilator dependent for the past seven months and needed tracheostomy care, constant suctioning, and multiple IV insertions. She had not shown much improvement in her respiratory and neurological function, and her long-term prognosis and quality of life were guarded. As the diagnosis was elusive, prognostication has been problematic. The ethics team provided ethics facilitation during the family conference and provided their recommendations. In general, it is ethically justified to withhold burdensome life-sustaining treatment when they are no longer beneficial or fail to achieve the goals of having a meaningful survival or neurocognitive function. In Ash’s case, both parties agreed on a non-escalation of therapy when she was deteriorating. There was a role to include the grandparents here as the parents coped with the impact of their decisions. Physical presence helped this family understand the intensity and burdens of care, and that everyone had given their best.

Discussion

Except for Adam, which was a case of misunderstanding of a parent’s statement of “Do your best, doc” for an advance care planning of a child, the other cases involved parental disputes surrounding the goals of care for severely ill infants. All had a certain level of shared decision-making through conversations with at least one parent. In Ash’s case, grandparents were involved in decision-making. Ethics deliberation was provided for all the cases. Stakeholders’ engagement and mediation were needed for Adam, Baby J, and Ash.

Defining Best Interest Standards

The parental-physician dispute was significant for Baby Uma and Baby J and, unsurprisingly, the moral distress that followed. With a narrow definition of best interest standards used by the managing team, the only option was to proceed with the surgeries.

A broader view of the best interest standard considers more — the risks benefit ratio and the burdens of life-sustaining treatment, survival and neurocognitive prognosis, social support, quality of life, family values, and other interests of a child. This expanded version of “best interest” has been mentioned favorably in the pediatric ethics literature — “The interests of children are neither absolute nor unambiguous… always intertwined with the interests of others, and often must be weighed against those other interests” (Lantos 1999), “A determination of a child’s best interest must be based on broader welfare, family and other non-medical factors as well as the benefits and burdens of treatment.” (Griffith 2013).

The best interest standard can also be tackled reasonably, “requiring not what is ideal, but what is good enough in the eyes of reasonable persons” — deciding based on “maximizing a child’s overall or long-term benefits and minimizing burdens” (Kopelman 1997). According to Loretta Kopelman, the best interest standard could also be community-defined and evolve according to maturing societal values and progress and improvement in resources.

Nevertheless, even with a broader or reasonable person’s view of the best interest standard, it was not easy at the point of decision-making to predict for certain the long-term neurocognitive prognosis, acceptable social support, quality of life, and other interests of Baby Uma and Baby J. A few from the managing teams believed, “We could only determine what was medically best. Other (social) factors were beyond our control.” That being said, the burdens of care these infants had to bear to survive or recover from complex congenital anomalies were too high to justify that the only option that the managing team had was to proceed with the surgeries.

Advocating for Children

Many pediatricians in Malaysia give their best when it comes to seriously ill infants, as evidenced by how funds were sought, and rounds of counseling were done for Baby Uma and Baby J to get the surgeries performed. The moral distress they experienced by doing otherwise was tremendous.

However, advocating “medically” best may create counter injustices for some families, especially those of marginalized populations, who struggle to keep up with the high needs of children with complex medical conditions and end up compromising other parts of childcare and the welfare of their children. They have done “their best” and should not be judged as irresponsible at such. In defending good-enough parenting, Jeffrey Bluestein stated that “Doing the best for one’s child could possibly be an acceptable principle of parenthood, but (also) only within a society that provides a more or less equitable distribution of resources to children and families generally.” (Bluestein 2012).

In addition, there is another ethical space for the pediatricians and surgical teams to settle in: prioritizing infants with better prognoses when resources are limited. However, it must be done transparently with adequate clinical governance oversight, plus a separate advocacy to improve the resources for infants with complex medical and surgical conditions within the community and healthcare leaders.

The Distance and Distinctiveness of the Harm Threshold

To further the arguments that parents are qualified to determine what is needed for their infants—first, parents assume responsibility for their well-being and safety and therefore need the power to decide which interests matter more; second, the affection of a parent and the shared value of a family system defines a child’s identity and interests in the future. Nevertheless, these arguments do not absolve parents from refusing recommended medical treatment for their infants, especially when it may otherwise harm them significantly.

Child Act 2001 (Laws of Malaysia, Act 611), the primary legislation that governs the protection of children in Malaysia, can technically safeguard a child’s life if they need life-saving medical or surgical intervention. Five years ago, this law was successfully applied to an infant with Down syndrome who had duodenal atresia and sepsis. The harm threshold was crossed due to parental refusal and other aspects of child neglect. He received a life-saving surgery after the courts granted temporary custody to the child protectors (Lee and Tan 2021).

Similarly, in the cases of Baby Uma and Baby J, pediatricians viewed parental refusal of surgeries as crossing the threshold to activate a child protection service or state intervention. However, it is critical to understand that state intervention for parental refusal requires another framework, often with a threshold distant and distinct from the best interest standard.

Douglas Diekema argues that state intervention is justified only when parental decisions “significantly increase the imminent risks of serious harm compared to other options.” He recommends that pediatricians use the harm principle to identify the harm threshold — “below which parental decisions will not be tolerated, and state intervention is indicated to protect the child” — with 8-point criteria as the “Condition for Justified State Interference.” (Diekema 2004). The harm threshold, which is lower than the ideal threshold of the best interest standard, is easier to define and causes less harm to the child, the family, and therapeutic relationships.

Therefore, state intervention should always be a last resort (American Academy of Pediatrics 1997), used only when treatment is likely to prevent substantial harm, suffering, or death. The impact of a state intervention on the child and family should not be greater than the actions the parents have sought (Diekema 2004).

With the complexity and uncertainties of outcomes and prognoses for conditions that Baby Uma and Baby J had, it was ethically problematic to say that the harm threshold had been crossed when two of the eight conditions (Diekema 2004) were not met:

• “Is the intervention that has been refused of proven efficacy, and therefore, likely to prevent the harm?"

• “Does the intervention that has been refused by the parents not also place the child at significant risk of serious harm, and do its projected benefits outweigh its projected burdens significantly more favourably than the option chosen by the parents?”

For Baby Uma and Baby J, the surgeries were not straightforward, with variable survival outcomes, high risks of complications, morbidities, and high burdens of care. There is an ethical space for parental discretion, or the zone of parental discretion (Gillam 2015), which can be identified once the higher threshold for best interest standard and the lower threshold for harm are set.

Zone of Parental Discretion

After an open conversation that considers concerns and values and parents still disagree, but no harm threshold has been crossed, pediatricians can ask if the situation falls within the zone of parental discretion. During a conflict, it is easier to determine whether a treatment is inside or outside the zone of parental discretion than to decide whether or not it is in the child’s best interest.

For infants, the size of the space for zone of parental discretion can be determined by the level of prognostic uncertainty (Krick et al. 2020). With less prognostic uncertainty, or in other words, the prognosis is clear, either good or bad, then the zone for parental discretion is narrower, with the harm threshold closing in nearer to the threshold of best interest standard. As prognostic uncertainty increases, the zone for parental discretion widens, with the harm threshold being farther away from the threshold of best interest standard (see Supplementary file 1).

For Adam, with a life-limiting condition, many would agree that an advance care plan was an opportunity for pediatricians and families to discuss the harms and benefits of life-sustaining treatment in consideration of the child’s long-term prognosis and their interests within the family’s values and preferences. When the neurodevelopmental outcome is somewhat consistent for a child with Wolf Hirschhorn syndrome like Adam, a decision to proceed with all active resuscitation at all costs may be ethically problematic. Similar to Baby Uma, at the later stage, when her lungs turned solid and surgery was no longer safe, the decision for comfort care became clear.

The complexities surrounding Baby J and Ash’s conditions came in the form of not having a consistent and reasonable survival or long-term prognosis that could justify the high risks and burdens involved. Ethically, it was acceptable to reconsider the goals of care for these infants from the start or at some point later, especially when treatment responses were poor, and the burdens of care were no longer acceptable to the managing teams and families.

Other Contextual Features

It is also crucial to highlight the social conditions of some of the seriously ill infants in Malaysia as children of forced migrants and refugee families. These children are denied legal rights to universal healthcare and public school education, which perpetuates further marginalization, exploitation, and poor health and well-being. They often present late to healthcare facilities with higher mortality and morbidity rates (Child Rights Coalition Malaysia 2019) due to various sociopolitical determinants of health that include the lack of sustainable health financing, unstable socioeconomic reserves, social isolation, fear of prosecution, poor health literacies, sociocultural and language barriers, and the lack of navigation skills within the healthcare systems.

Most of these children depend on support from the United Nations High Commissioner for Refugees and other safety nets through non-governmental organizations such as The Qatar Fund for Development, Tzu-Chi Free Clinic, Klinik Amal Muhajir, Refugees Emergency Funds, IMARET, and other crowdfunding activities by the public (Refugee Malaysia n.d.).

Pediatricians experience deep regrets when they decide to provide lower standards of care for these children that are against their professional obligations. Pediatricians experience deep regrets when they decide to provide lower standards of care for these children that are against their professional obligations. Regrets or moral residues left over from overriding prima facie obligations such as do-no-harm, even if the ethically best course of action has been taken, may cause burnout. Clinicians can make up for this by notifying in advance, apologizing, compensating, minimizing harm, or changing the circumstances so that similar conflicts do not occur again (Beauchamp and Childress 2019). For example, pediatricians can consider utilizing and supporting these alternative community resources while advocating for systemic and social changes.

Approaching Moments of Moral Distress and Conflict in Clinical Practice

In moments of moral distress and conflict, pediatricians can consider gathering more information and perspectives, which include local survival and morbidity statistics, alternative treatment options and available resources, and additional community support, and then utilize the different ethical principles and frameworks to consider what is best for a child.

In recognizing the limitations to prognosticating or finding ethical clarity during challenging moments, clinical ethics offers a supportive and practical space to find resolution and meaning (Lantos et al. 2019). A clinical ethics mediation or facilitation and a further second opinion should be considered during intractable disputes when no consensus can be achieved. At times, when loving families like Ash’s ask to continue life-sustaining treatment when it no longer benefits, it is also critical to consider if they are having a hard time making decisions that violate their deepest emotional needs (Lantos 2018). Therefore, it is ethically necessary to accept a passive assent when families silently acknowledge a decision, as in the case of Ash, unless they explicitly oppose it.

Conclusion

Pediatricians feel obligated to do their best, treat every child and family the same, and feel morally distressed if unable to do so. They can consider gathering more information and perspectives and utilize the different ethical principles and frameworks to consider what is best for a child. Clinical ethics deliberation can provide clarity in challenging moments and suggest ethically acceptable options by asking for the indications, net benefits, and burdens of treatment and consideration of the goals and values of parents and families. Clinical ethics mediation can facilitate difficult conversations and bring resolutions and closure for stakeholders. Within these moral spaces, the responsibility of heavy decision-making can thus be shared and reflected upon.

Supplementary Information

Below is the link to the electronic supplementary material.

Funding

This is a self-funded perspective paper.

Data Availability

Not applicable.

Declarations

Conflict of Interest

The author declares no competing interests.