Lina

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.

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.

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.