CASE STUDY

Lina

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This case concerns an adolescent with recurrent leukaemia, and physician-parent conflicts over her treatment plan. It explores the rights of the adolescent patient and the possibility, consequences and ethics of seeking judicial intervention in the best interests of a child.

Lina

Lina Tan has recurrent childhood chronic myeloid leukaemia. She was diagnosed three years ago, at age 11, and underwent chemotherapy and other treatments, resulting in remission. Lina was able to return to school and resume a relatively normal life for about two years. When the disease recurred one year ago, Lina underwent a second round of chemotherapy. After a short remission, the disease relapsed. Lina, who is now 14, was recently re-hospitalised for further tests.

While Lina is resting one morning, Lina’s paediatric oncologist, Dr Chong, speaks with Lina’s parents, recommending a stem cell transplant, telling them, ‘Lina is still strong, I think this could help her.’ After Dr Chong and his colleagues explain the benefits and risks of the stem cell transplant, as well as the financial cost of the procedure, Lina’s parents give consent for the transplant.

That afternoon, Mr Tan expresses second thoughts to Nurse Esther, whom his family knew well from Lina’s many hospital visits over the years. ‘Our daughter has been through so much already! I don’t know where we’ll find the money.’

Nurse Esther subsequently tells Dr Chong, ‘I think you should have another meeting with Lina’s parents. They’re not happy about the stem cell transplant.’

During evening rounds, Dr Chong stops by Lina’s room. After a brief chat with his patient, Dr Chong asks Lina’s parents to join him in a small conference room down the hall.

‘I’m so sorry that Lina is back in the hospital, but it’s always good to see her – she’s one of my favourite patients. We didn’t have much time to talk this morning. Do you have any question about the next treatment – the transplant? My team and I would like to discuss it with Lina.’

Mr Tan said, ‘Thanks, Dr Chong, but I think that won’t be necessary. We’re grateful for everything you’ve done for Lina. Our family has talked about this today, and we think it’s time to try something else. We want to try TCM.’ (TCM is Traditional Chinese Medicine.)

Dr Chong says, ‘I understand you want the best for Lina – we all do. But there’s no evidence that TCM is effective in treating leukaemia.’

Mr Tan says, ‘We want to try. My brother has recommended a practitioner who can meet us soon. When can we take Lina home?’

Dr Chong calls an emergency team meeting to discuss Lina’s parents’ request.

Nurse Esther says, ‘I am so worried about this. TCM on its own is not going to help this girl at all.’

Dr Rosario, an oncology fellow working under Dr. Chong, says, ‘Well, it’s not as if there’s a study that compares TCM to stem cell transplants that we can point to.’

Nurse Esther replies, ‘Her father is worried about money – he told me that. Her mother doesn’t say anything when he’s in the room. I think the TCM is his idea.’

Dr Chong says, ‘Lina is my patient, and I’m going to have a proper talk with her directly. She’s 14, she’s had a lot of treatment, she knows what’s going on, and so she deserves a say.’

Early the next morning, before Lina’s parents arrive at the hospital, Dr Chong talks with Lina.

‘You’ve probably figured out that the last treatment didn’t work so well. I’ve told your parents that I think we should try a stem cell transplant.’

‘What do my parents say?’

‘Right now, I want to know what you think.’

‘I want to get better! I’m so tired of being sick, being in the hospital, missing school. But I’ll do whatever my parents think is best. Is that okay?’

Dr Chong is frustrated. He tells Dr Rosario: ‘Every now and then, you get a case like this – a patient who is very sick but has some chance of benefiting from further treatment, and a family that all of a sudden wants to try something ‘different’. I could push this with the family if the patient said, yes, I want the transplant – but she’s 14. Her mom and dad have been making medical decisions for her all along, so it’s easier for her to let them decide.’

Later that afternoon, Lina’s parents arrive at the hospital. On their way to Lina’s room, they meet Dr. Rosario in the corridor.

“Hello, Dr Rosario. As Dr Chong probably told you, Lina is going to try a different treatment. We’ve made arrangements and are just waiting for her to be discharged.”

Dr Rosario says, “Are you sure about this, Mr and Mrs Tan?”

‘We’re sure,” said Mr Tan, firmly. “Lina is going to be okay.’

‘Well, um, if anything – I mean, if you need anything, please call Dr Chong.’

‘Thank you, Dr Rosario, we have everything we need. Thanks again.’

During evening rounds, Dr Chong again speaks with Dr Rosario:  ‘I signed off on Lina’s discharge today. “Her parents were very clear that they wanted to try TCM. Lina didn’t say anything. They have their rights as parents. The stem cell treatment could save her life. So we could try to get a court order to treat the patient without the parents’ consent. But those  MSF  cases are so draining. I’ve been through that before. Mountains of paperwork, the parents become your enemies, and it’s very hard on the child. In this case, let’s just hope the parents get over this TCM idea and bring Lina back soon.’

Privately, Dr Rosario has a word with Nurse Esther: ‘Should we have done something differently when we talked to the family? You don’t want to get the family angry, but you do want to help the child – she’s got recurrent cancer, she’s just going to get worse.’

Nurse Esther says, ‘I don’t know what to tell you. I’m so upset – I was so sure that they would listen to Dr Chong. Maybe I should have tried to talk to them myself. It felt so wrong to be discharging her today – but what else could we do?’

Several months later, Lina is readmitted to the hospital, suffering from weakness, bruising, pain, and other symptoms of disease progression. Tests reveal that the leukaemia is spreading to her brain and central nervous system. Dr Chong breaks the bad news to Lina’s parents, who are distraught. Her father says, ‘We’ve lost all this time! How soon can she have the stem cell transplant?’

Dr Chong and Nurse Esther attempt to explain Lina’s worsening condition. Dr Chong says, ‘Lina’s pain and symptoms can be treated, even if we’re not sure if we can treat the cancer itself.  I’ll arrange for a consult with our palliative care team.’

‘No,’ says Lina’s father, ‘We don’t need to hear about that. Just, please, save our daughter’s life.’

Lina’s mother finally speaks. ‘And please – tell Lina that she’s going to be fine. She’ll believe you.’

Later that day, Dr Rosario stops by Lina’s room. She is tired but awake.  She says ‘Dr Rosario, what’s going on? Tell me the truth.’

 

When parents seek alternative treatments

Commentary by Calvin W. L. Ho

In this case, the parents of Lina Tan, an adolescent with leukaemia, first agree that their daughter should receive a stem cell transplant after chemotherapy fails, then change their minds and tell the medical team, “We want to try TCM.” The reason for this change is never quite clear, although there are hints that cost, and the burden of further hospitalisation on their daughter, are factors. While the medical team did not consider TCM to be an effective intervention for leukaemia, Dr Chong, Lina’s oncologist, was reluctant to seek a court order that would allow the medical team to provide life-sustaining treatment to a minor such as Lina without parental consent, and hoped that Lina’s parents would reconsider.

Traditional Chinese Medicine (TCM) is a form of complementary and alternative medicine (CAM).  In general, ‘complementary’ refers to remedies, such as herbal supplements, that are integrated with standard (sometimes referred to as ‘Western’) medical treatment, while ‘alternative’ refers to the primary or exclusive use of non-standard remedies. TCM is common in Singapore, where TCM practitioners are regulated by the TCM Practitioners Board. Clinicians are generally receptive to their patients’ preferences concerning the use of TCM as a complementary remedy combined with standard medical treatment, provided there are no contraindications between, for example, a chemotherapy drug and an herbal supplement that a patient may use to counteract nausea.  The use of TCM (or any other complementary remedy) as an alternative to standard medical treatment for a life-threatening condition raises a range of ethical concerns, including whether a decision to forgo life-sustaining treatment to pursue alternative treatment is an informed decision; whether such a decision may close off future options should the patient’s condition worsen; and whether such a decision can be made on behalf of a person who is not able to make this type of decision for himself or herself. All of these questions are present in this case.

What could this team have done differently once Lina’s parents withdrew their consent for the transplant and said, ‘We want to try TCM’ as an alternative treatment?  Dr Chong and his colleagues could have tried to find out what this statement meant to Mr and Mrs Tan, and to explore their sudden resistance to the proposed treatment plan. Does the desire to use TCM as an alternative to cancer treatment reflect a desire to alleviate suffering through the use of an approach that they may perceive as ‘gentler’? Does their decision reflect concerns about the cost of the stem cell therapy? Are the goals of the proposed treatment unclear in some way?

The medical team could also have explored the possibility of consulting with TCM practitioners among colleagues in the hospital, carefully clarifying the goals of medical treatment and collaborating on ways to incorporate TCM into the care plan, without abandoning the stem cell therapy.

Finally, this team, like any team responsible for the medical treatment of a minor, needs to be clear, among themselves and within their institution, about the circumstances that would compel them to seek a court order for treatment. The case suggests that Dr Chong has been through this process before, and that his thinking concerning the present situation is influenced by an adversarial, psychologically ‘draining’ past experience of his own, or by his colleagues’ experiences. This, too, is of ethical concern, if clinicians’ past experiences are limiting the options of their current patients. Calling for ethics consultation with the hospital’s ethics committee was an unexplored remedy in this case, and might have provided support to Dr Chong and his colleagues as they worked with Lina and her parents.


Citation

Commentary by Ho, Calvin W. L., ‘When parents seek alternative treatments', 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.

The voice of the child

Commentary by Michael K. Gusmano

Lina’s request to know ‘the truth’ about her condition puts Dr Rosario in a difficult position. Lina is an adolescent. To this point, her parents have made all of her medical decisions, and it is unclear how much information she has been given over the past three years about her diagnosis, treatment, or prognosis. She is, however, able to see that her health has deteriorated. In asking for ‘the truth’, she may suspect that the truth has been withheld from her in the past.

Withholding truthful information from Lina fails to respect her as a person capable of understanding her current situation.  Creating false hope, by giving Lina or her parents an unrealistic picture of Lina’s prognosis, is another ethical problem, as it could result in poorly-informed treatment and care decisions.  Being untruthful may also create mistrust between Lina and the healthcare team.

At the same time, Dr Rosario knows that Lina’s mother has asked Dr Chong, who directs the team, to tell Lina that “everything is fine.”   This junior doctor may wonder how to reconcile the patient’s preferences, expressed to him, with the parent’s instructions, expressed to his senior, and also what the law requires of him in situations like this.

This scenario might have been avoided if the medical team had talked early on with Lina and her parents about Lina’s own role in her medical treatment and care, why her preferences mattered, and how a patient of Lina’s age could be involved in treatment decision-making. Dr Chong did attempt to find out more about Lina’s preferences after recommending stem cell therapy to her parents, but once she said, “I’ll do whatever my parents think is best,” he made no further efforts to understand her preferences. Cases like Lina’s require clarity about professionals’ responsibilities to pediatric patients, including how adolescent patients, whose capacity to make decisions began to develop in childhood, should be involved in the decision-making process.

Families, patients, disclosure, and communication

Lina’s question to Dr Rosario – ‘What’s going on?’ – is a poignant reminder of what clinicians owe to patients: a way of framing the experience that the patient is living with. Lina knows she is sick – she is hospitalised, after all. By the end of the case, she is experiencing symptoms of worsening disease, things that are happening to her as well as showing up on tests. She knows something is going on; she wants ‘the truth’ about what it is. Lina’s parents want her medical team to reassure their daughter that “she’s going to be fine.” The urge to protect a child from any source of distress, including distressing information, is strong. However, pretending to Lina that things will be fine would undermine Lina’s trust in the people around her. That she is asking Dr Rosario for ‘the truth’ suggests both that the truth is important to her and that she does not trust what her parents are telling her. When Lina’s mother says, “She’ll believe you,” she is acknowledging that her daughter trusts Dr Chong as a source of information. Dr Chong and other members of the team should take this opportunity to reinforce the importance of supporting Lina by being trustworthy, by asking her what she wants to know, and responding to her concerns truthfully.

Adolescents and decision-making

By the age of 14, adolescents may be as capable as adults of understanding complex medical information, even though, due to their continuing neurological development, they may not yet fully grasp the long-term consequences of a decision about life-sustaining treatment. Involving adolescents in decision-making about their own lives and healthcare (as they are willing and able) respects their developing autonomy and helps others to understand the preferences of the person who is experiencing illness and treatment. A ‘shared’ or ‘collaborative’ decision-making model, involving the adolescent patient, the parents, and medical professionals, is appropriate for these circumstances.

Integrating palliative care

According to the case, Dr Chong did not mention the palliative care team until after Lina’s condition deteriorated significantly. When Dr Chong suggests involving palliative care, Lina’s father resists because, to him, this represents ‘giving up’. As a consequence, Lina’s pain and symptoms may be inadequately relieved as her parents try to pursue medical interventions while trying to keep palliative care out of the picture. If palliative care expertise and insights had been part of Lina’s care from the start of her illness three years before, it is possible that the concerns that prompted the parents to stop standard treatment and switch to TCM, and then to try to switch back to standard treatment once Lina’s condition worsened, might have been addressed more effectively. Nevertheless, in the interest of preventing harm, in the form of unneeded suffering to Lina, her doctors should be prepared to advocate for their patient, and to ensure that palliative care is part of her care plan.


Citation

Commentary by Gusmano, Michael K., ‘The Voice of the Child', 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.

Family styles and decision-making

Clinical perspective by Jacinta O. A. Tan

Other things may change us, but we start and end with the family. – Anthony Brandt

The treatment of children and adolescents is also the treatment of the family. In truth, almost all of us are embedded within a wider context of family, and beyond that, society. As dependents, however, children and adolescents are generally more vulnerable to their setting and may have less power to exercise personal autonomy. This brings with it certain complexities, as the case of Lina demonstrates.

Family styles of decision-making can impact on treatment decisions. Lina’s father is clearly the spokesman for the family, and the clinicians have assumed that he is the family’s authority figure, and the decision-maker on behalf of both his daughter and his wife. This may not be true. Different families have different family decision-making styles concerning medical decisions. In some families, one person may make the decisions for the family and patient, and all other members of the family (including the patient) are voiceless and powerless. In other families, there are pre-existing tacit agreements about family priorities and values, and one person asks as spokesman about the decisions made within the family system, with or without overt family discussion. Some families engage in full discussion between patient and other family members, but the patient makes the final determinative decision with the support of other family members. Some patients act as the sole decision-maker, with no family members involved.

In Lina’s case, as in the case of most children and adolescents, it is unlikely that a patient would be the sole decision-maker, with no or limited family involvement. It is unclear how her family has been making decisions and whether Lina has had any voice in these decisions, or if she may not be as voiceless as she appears. At some level she may have tacitly or overtly agreed with or bought into the family decisions, and may have decided to allow her father to speak for her and determine her welfare. Her mother similarly may have tacitly accepted or agreed to the decisions articulated by her father. Because most adolescents are at fluctuating points between the childhood state of being heavily reliant on parental attitudes and the (ideal) adult state of having independent selves and views, Lina’s apparent passivity may reflect a developmentally appropriate reliance on the family’s priorities and values to help determine healthcare decisions for her life-threatening condition. Furthermore, as treatment may have serious financial consequences for the family, certain family members have a legitimate stake in this decision.

Being very ill bestows particular vulnerabilities; being an ill dependent minor more so. In times of family crisis, as is occurring with Lina’s health, there may be a retreat into a belief that a ‘good’ child should defer to his or her parents, who hold parental responsibility and authority. In turn, ‘good’ parents may take what they consider a protective and caring stance towards their child and may attempt to relieve her of what they consider the burdens of full disclosure/knowledge and the responsibilities of decision-making. Is this bad? It is certainly problematic when these notions of protection and care arising in families collide with professional obligations concerning disclosure, privacy, confidentiality, and informed consent, and also with the patient’s explicit concerns, expressed by Lina: “Tell me the truth.”

The parents who are trying to be ‘good’ parents are not morally ‘bad’ because they want to shield their daughter. And yet Lina is owed an honest answer to her question: “What’s going on?” What are the options beyond agreeing with the family spokesman and ignoring the voice of the child, or forcing a family to act in a child’s best interests by taking the case to court? These questions can only be answered if the healthcare team explores how the family works, what the values and motivations of each member of the family are, and how the family makes decisions; through a process of ongoing conversations with the parents alone, with Lina alone, and with the family together. When a patient has been relatively disempowered within her family, the ongoing task for clinicians may be to guide Lina (and her family) in developing and articulating her views and attitudes towards the issues at hand, in order to optimise her autonomy and input into the family’s decisions.

Ideally, this style of engaging families in talking about – and walking with them through – making decisions should be part of a style of routine healthcare. Just as families have styles, teams have their own styles; and teams should be reflective about their own values and practices. They should consider consciously adopting a normal working style where they learn about how individual families work from a position alongside them. Team practices, which are as value-laden as family priorities, should be transparent and form a supportive culture where families know what to expect and can navigate their way.

A learning point from Lina’s case is that it would be helpful for teams to start with ground rules about openness where there is an expectation that adolescents are participants in, rather than subjects of, healthcare decisions. At the same time, family styles should be identified and respected, with appropriate levels of support and disclosure then negotiated and agreed by all and tailored to developmental need and family style. If this is the case, the family’s apparent reluctance to involve Lina would be examined and discussed from the start, rather than being colluded with or tolerated and subsequently becoming an issue in a crisis. Furthermore, there can be a policy of assigning each significant family member – such as Lina, her mother, and her father – different team members who can be their advocates to support them from their own perspectives as well as give them the space to develop their views and attitudes. Finally, families need to be supported in the process of making decisions, and where possible, given enough time and space to decide.


Citation

Clinical perspective by Tan, Jacinta O. A., 'Family styles and decision-making', 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.