CASE STUDY

Baby Arun

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This case concerns an extremely premature, critically-ill newborn. It explores prognostic uncertainty in the neonatal ICU setting, and the challenge of communicating frequently-changing medical information while providing support to the baby’s parents and other concerned relatives.

Arun: Decision-making in the Neonatal ICU

Priya and Vikram Banerjee are a married couple in their mid-thirties. Priya was raised in Singapore and works as a lawyer. Vikram, an engineer, was raised in Mumbai, where much of his family still lives, and moved to Singapore in his mid-twenties. They are first-time parents.

When Priya was four months pregnant, she began experiencing contractions and was hospitalised on bed rest. Her obstetrician, Dr Lai, consulted with Dr Ambrosio, a neonatologist, about the case, and together they met with Priya and Vikram to talk about the decisions that they would face if their baby was born extremely prematurely.

When their son, Arun, was born at 23 weeks estimated gestation, his parents quickly decided to start life-sustaining interventions, including ventilator support for the baby’s underdeveloped lungs.

The Banerjees, like other Neonatal Intensive Care Unit (NICU) parents, rarely leave their baby’s side, and, while exhausted, are encouraged by the reports they receive from the rotating shifts of registrars about Arun’s vital signs. At their daily meeting with Dr Ambrosio, they become accustomed to giving consent for interventions. Arun’s incubator is covered with photos of his parents, his aunts, uncle, and cousins, his grandparents – his family.

Two weeks after Baby Arun’s birth, Dr Nassim, a resident, is working the overnight shift in the NICU. He notices signs and symptoms, including abdominal swelling, suggesting that the baby is developing necrotising enterocolitis. Priya is dozing next to Arun’s incubator – her husband has gone home for a few hours to catch up on sleep. She notices Dr Nassim and whispers, ‘Everything okay?’

‘Oh, sorry! Didn’t mean to wake you. I’m just checking on Arun.’ In the early morning, Dr Nassim updates Dr Ambrosio on the baby’s changing condition, which he and the bedside nurses have monitored throughout the night. Dr Ambrosio then meets with the Banerjees:

‘We’ve had a little setback with Arun. He’s developed a condition we see often in preemies – some of the tissue in his intestines is compromised. We’ll be watching him closely today, and will stop his feeds while we try to give his digestive system a rest so it can recover. It’s possible that we may need to take him into surgery at some point.’

‘Oh no, no, no! Whatever you need to do, just please fix it.’

Baby Arun has emergency surgery later that morning to remove necrotic sections of his intestine. He returns to the NICU with a temporary colostomy. Dr Ambrosio meets with the Banerjees again:

‘Arun came through the surgery as well as possible. We hope to reverse the colostomy when he’s healed and is a bit stronger. For now, we’ll be watching for any signs of distress, such as breathing difficulties. If he starts to struggle, there’s only so far we can increase the ventilation without damage to his lungs. This can cause serious problems down the road.

‘I need you to think about whether we should escalate ventilation if Arun starts to have trouble breathing. We can try to avoid escalation and aim to keep things as they are.’

‘But then he might not make it…? We don’t have to decide this right away, do we?’

‘Not right this second. Let’s talk again in a few hours.’

Later that afternoon, Vikram receives a call from his mother in Mumbai – Mrs Banerjee checks in at least once a day to find out how Baby Arun is doing. Vikram tells his mother about the surgery and the baby’s uncertain prognosis, adding, ‘We’ve been talking. I think we’re going to tell the doctors not to escalate treatment if things look like they’re getting worse. We just can’t stand the idea that Arun might suffer more. Try not to worry, Mummy – I’ll talk with you tomorrow.’

Baby Arun begins to have trouble breathing, and the medical team observes signs and symptoms that his lungs are becoming injured and his overall condition is deteriorating. That evening, Vikram and Priya consent to a ‘do not escalate’ order, which is entered into Arun’s chart.

Early the next morning, Mrs Banerjee arrives at the hospital, having come straight from the airport. She is directed to the NICU, where she introduces herself to the nurse at the front desk, ‘I am Arun Banerjee’s grandmother. I need to speak with my son, Vikram.’ The nurse goes to find Vikram, who is surprised by the news that his mother has just arrived.

‘Mummy! What are you doing here?’

‘Vikram, I couldn’t stay at home any longer. You and your wife – you need family with you. Our family. Now tell me, what is going on? How is the baby?’

‘It’s touch and go, Mummy. He’s pretty sick.’

‘But the doctors are doing all they can? You told them they must do that? This is your son. Your only child. You don’t know if you will have another. You must fight for him.’

‘Mummy, we’re trying. We’re so tired.’

‘Vikram, let me help you. I will talk to the doctors with you, when we go to see the baby.’

Vikram and Mrs Banerjee go to Baby Arun’s incubator. Priya is there, talking with Dr Nassim and Nurse Anita, who is caring for the baby this morning. Priya greets her mother-in-law:

‘Mummy! We didn’t know you were coming! We’ve been talking with Arun’s doctors…’

‘Yes, I want to help you with that. We were so worried when Vikram told me yesterday that you were thinking about not going all out with treatment. We thought, you must be exhausted, not thinking clearly. Never mind – I’m here now. And I will pay for all of this.’

Mrs Banerjee turns to the medical team. ‘Doctor, you must save my grandson’s life. Do whatever it takes. My husband and I will pay, don’t worry about that.’

Dr Nassim looks at Vikram and Priya. ‘Tell me what you want. It’s your decision.’

Vikram and Priya look at each other, at their son, at Mrs Banerjee. Vikram is the first to speak. ‘I, I don’t know anymore. What’s the right answer?’

Conflicts among family members in the Neonatal ICU

Commentary by Michael K. Gusmano

The problem with family conflicts in healthcare

It is not uncommon for family members to disagree about the goals of care in the Neonatal Intensive Care Unit (NICU). The status of a baby in the NICU can change rapidly, as it did in the case of Baby Arun. An NICU can often provide special care that will save the life of a sick or premature infant, but it is also a setting where many babies die. The anxiety, stress, and uncertainty of the NICU experience can, in some cases, lead to conflicts between parents or between parents and other relatives. Family disagreements about the goals of care in a NICU make it difficult to reach a decision and act in the best interests of the baby. They also create anxiety for the family members and clinicians responsible for providing care to the baby. In the case of Baby Arun, the arrival of Arun’s grandmother causes his parents and the clinical team great distress and confusion. Although Arun’s parents Vikram and Priya have made the difficult decision not to escalate ventilation if the baby begins having trouble breathing, his grandmother, who has just arrived from India, insists that the doctors must ‘do whatever it takes’ to save Arun’s life. Given the uncertainty that Vikram and Priya must have felt about their decision, it is not surprising that Mrs Banerjee’s pronouncement leads them to doubt themselves. Unfortunately, Arun’s physician on the spot, Dr Nassim, is equally unsure how to address this situation. His immediate reaction adds to the parents’ confusion: should the arrival of a new family member reopen a decision, or not?

Vocal family members

In cases like Baby Arun’s, clinicians should guard against allowing more vocal family members to dominate the parents who are responsible for serving as decision-makers on behalf of their child. The preferences of the more vocal family member may not represent the best interests of the child or the preferences of the child’s parents. Although Vikram wonders aloud about what they should do, it is not clear that he and his wife have actually changed their mind about what is best for their baby. They are, however, exhausted, perhaps already grieving and may feel pressure to defer to a family member who is deeply concerned that they have made the wrong decision. Under these stressful circumstances, it is not surprising that parents, having made an informed decision, would then express uncertainty, even though Mrs Banerjee’s perspective on what should be done for Baby Arun may not reflect sufficient understanding of the baby’s current medical condition.

Although Mrs. Banerjee’s sudden arrival almost certainly reflects her love and concern for her son, daughter-in-law, and grandchild, her assumption that Vikram and Priya’s decision was a reflection of their exhaustion rather than a careful consideration of the clinical facts and Arun’s potential suffering, should not distract the healthcare team from their focus on the needs of the baby and on the ability of his parents to make decisions on his behalf.

Dr Ambrosio, Dr Nassim, and the rest of the team have a responsibility to make sure that the parents are not being excluded from the decision-making process just because Mrs Banerjee has inserted herself into the situation. Unless the parents make it clear that they wish to defer to the baby’s grandmother, the clinicians  should support the parents’ preferences and decisions.

Is there a history of conflict among family members?

While family conflict over the treatment plan for a baby in a NICU (or indeed any patient in a critical care setting) may be the result of the stress associated with the immediate situation or the failure of some family members to fully understand the patient’s prognosis, it is also possible that the conflict in the NICU reflects a history of conflict within a family.

The healthcare team may know very little about prior relations among family members. For example, in this case, team members may not know whether Mrs Banerjee frequently aims to become involved in major decisions in her extended family, or if this is unusual behaviour brought on by a traumatic situation. Nevertheless, they can recognise Mrs Banerjee’s good intentions while helping the entire family to focus on the best interests of the baby, and on developing a care plan that reflects his best interests.

Effective communication with the entire family

Effective communication and agreement among members of the healthcare team and between clinicians and patients and/or their families is always crucial. Vikram and Priya have been doing their best to endure an extraordinarily difficult situation. The clinicians leading the care of Baby Arun in the NICU have assisted them in doing so by providing regular updates about his condition. Using language the parents understand, Arun’s clinicians helped to prepare Vikram and Priya for the choices they may face and the consequences of those choices. Mrs Banerjee has been in touch and supportive by phone, but has been more distant from the day-to-day situation, and may, understandably, have hoped that Baby Arun’s condition was improving.

The team should recognise that Mrs Banerjee needs help to understand the situation. Her stance may simply reflect the fact that she does not understand the clinical reality or has not had time to take in the new information she has received. Even though she does not have legal authority to make decisions about Baby Arun’s care, it is important to communicate clearly and effectively with Mrs Banerjee. Her strong objections are likely to have an impact on her son and daughter-in-law. If she continues to contradict their decision and insist on aggressive intervention, this will cause further distress for Vikram and Priya and make it more difficult for them to act in their baby’s best interests. The capacity of Arun’s parents to make a decision in the baby’s best interests depend, in part, on the ability of the clinical team to help Mrs Banerjee understand the situation.

Along with clear communication about the baby’s medical prognosis, it is important for the clinical team to recognise that both Baby Arun’s parents and Mrs Banerjee are dealing with grief over the deterioration of the baby’s condition. Dr Ambrosio and his team should involve experts in palliative care to help all members of the family cope with these emotions as, together, they care for the child.

Citation

Commentary by Gusmano, Michael K. ‘Conflicts among family members in the Neonatal ICU', in Chin, Jacqueline, Nancy Berlinger, Michael C. Dunn, Michael K. Gusmano (eds.), A Singapore Bioethics Casebook, vol. i: Making Difficult Decisions with Patients and Families (Singapore: National University of Singapore, 2014; 2017), http://www.bioethicscasebook.sg.

Making decisions in the Neonatal ICU

Commentary by Calvin W. L. Ho

Neonatal best interests: Who decides and what are the legal standards?

Under the Children and Young Persons Act (Revised 2001), the parents or guardian of a child or young person are designated as being primarily responsible for his or her care and welfare (Section 3A(1)) . A ‘child’ is legislatively defined as a person who is below the age of 14 years, which includes newborns such as Baby Arun.

Generally, either parent (i.e., Priya or Vikram) has the legal authority to make routine medical decisions on behalf of their child. For a decision concerning life-sustaining interventions or decisions that could cause a serious deterioration of health in the child, as is presented in this case, the agreement of both his parents should be obtained. Without the consent of the child’s parents or guardian, neither the healthcare team nor other relatives, such as grandparents, have the authority to make medical decisions on behalf of a child, because they do not have charge of or control over the child’s care and welfare in other respects.

A child’s parents can consult with relatives or others when considering a decision. Members of the healthcare team may need to explain that the parents or guardian have decision-making authority and be prepared to support the parents if there is disagreement within the family.

Best interests decision-making in the NICU setting

According to Singapore law, the welfare and best interests of their child are the first and paramount consideration of parents when making healthcare decisions for their child (Children and Young Persons Act, Section 3A(2)). The healthcare team similarly owes the patient a legal duty to act in his best interests. This will involve ongoing discussions with Baby Arun’s parents on his evolving condition, palliative care, the goals of continuing appropriate treatment at different stages, and withholding or withdrawing any interventions that cause excessive or unwarranted suffering to the neonate.

Resources to support conflict resolution in the NICU setting

Conflicts can arise in the stressful context of NICU decision-making, where the patient’s own preferences cannot be known.  In this case, Baby Arun’s parents, in consultation with the healthcare team, have made the decision that a do-not-escalate order is in their baby’s best interests, while escalating interventions in the face of the baby’s deteriorating condition would do more harm than good. When the baby’s grandmother arrives and challenges this decision, the physician is uncertain how to handle this situation, and the parents are placed under even greater stress. What if they now disagree with each other? What happens if they decide to rescind the order and the team disagrees with this decision? While all NICU physicians should be prepared to support best-interests decision-making by parents and to manage family disagreements, medical social workers and Hospital Ethics Committee consultations are other resources available in Singapore hospitals when families face difficult decisions.

If a dispute between parents and professionals concerning the health and welfare of a child cannot be resolved, the court has the final decision-making authority.

Citation

Commentary by Ho, Calvin W. L. ‘Making decisions in the Neonatal ICU', in Chin, Jacqueline, Nancy Berlinger, Michael C. Dunn, Michael K. Gusmano (eds.), A Singapore Bioethics Casebook, vol. i: Making Difficult Decisions with Patients and Families (Singapore: National University of Singapore, 2014; 2017), http://www.bioethicscasebook.sg.

Communication in an uncertain situation

Clinical perspective by Roy Joseph

Baby Arun was born at 23 weeks of gestation. Whenever interventions are begun in babies born at the current margins of viability, it is imperative that neonatologists impress upon the parents that there will be frequent episodes of deterioration that will need to be addressed; it will be uncomfortable and painful for both baby and parents; perseverance is needed; and there will be practical limits to interventions – and that it will be unprofessional and unethical for them to proceed beyond a certain limit because it will not be in the best interests of the child.

In such circumstances, the healthcare team needs to initiate counselling with parents even before delivery and before interventions are begun with Baby Arun. When sophisticated interventions are brought to bear in a likely futile situation without appropriate discussion of the goals of the intervention, physicians will often find themselves in a mess. In this case, it appears that Dr Ambrosio is in such a situation.

The events that have unfolded are to be expected in every baby of this gestation. Having survived for two weeks and through surgery, it appears that the baby has started to succumb. The doctor now realises that it is time to stop, and recommends a change in the goals of care which the parents are in agreement with. This is acceptable as it minimises further harm to the baby and enables care for the dying to commence.

It is important to note that decisions regarding the withholding or withdrawing of life-sustaining treatments that cannot benefit a patient are primarily medical decisions. Care should be taken to ensure that parents are not made to feel responsible for what are professional decisions. It appears that the parents have been led to believe that they alone are making the decision. ‘Tell me what you want. It’s your decision,’ is unhelpful and misleading language. Quite naturally, this leaves them very distressed. Parents should be reassured that they do not bear the burden of decisions for their child on their own. Physicians are just as responsible for deciding in this baby’s best interests by making professional judgements in the light of corroborated clinical perspectives that are usually multidisciplinary in nature.

As the decision is based on medical rounds, the arrival of the grandmother should not change the decision. Relatives who parachute into situations such as these are emotionally very distressed and grieving, and almost always in a ‘fight’ mode. Managing the situation requires skill and training. It would be wise and prudent for medical teams at this stage to ensure that their best-trained persons are put on the case. The principles of management will be to ensure that the newcomer is shown respect and welcomed into the ‘team’. Their concerns need to be identified, validated and empathised with. Very slowly but surely, they need to be presented with the facts and guided to view the situation from the perspective of the child’s best interests. The price of survival in these babies is very severe and usually accompanied by disabling non-reversible morbidities.

Time will be needed for such an important relative to be counselled and, in the meantime, it will be necessary to continue with the appropriate interventions. If indeed death is imminent, then the dying process will become very visible in spite of the interventions and it will not be long before Mrs Banerjee herself announces that it is time.

Citation

Clinical Perspective by Joseph, Roy, ‘Communication in an uncertain situation', in Chin, Jacqueline, Nancy Berlinger, Michael C. Dunn, Michael K. Gusmano (eds.), A Singapore Bioethics Casebook, vol. i: Making Difficult Decisions with Patients and Families (Singapore: National University of Singapore, 2014; 2017), http://www.bioethicscasebook.sg