This case concerns a middle-aged professional and parent in a minimally-conscious state, his wife’s emotional and practical challenges in making decisions on behalf of her catastrophically injured spouse, family conflict, and the responsibilities of the healthcare team.
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This case concerns a middle-aged professional and parent in a minimally-conscious state, his wife’s emotional and practical challenges in making decisions on behalf of her catastrophically injured spouse, family conflict, and the responsibilities of the healthcare team.
Nigel Yung is 37 years old. He is married, with three young children. One year ago, he was struck by a speeding car while crossing a busy intersection near his office in the Central Business District. He suffered severe traumatic injuries to his head and other parts of his body, and received extensive life-saving interventions immediately following the accident. He spent several weeks in the intensive care unit, in a coma, and then in a vegetative state (VS). He was subsequently weaned from a ventilator and began to breathe on his own. He was eventually discharged, first to a community hospital, then to home care, as his overall condition stabilised.
Prior to the accident, Mr Yung had seen a television programme about a legal case in another country, involving a patient with a traumatic brain injury. After the programme, he told his wife Annabel, ‘If anything like that ever happens to me, please don’t resuscitate me. Just let me go, okay? I would want you and the kids to live your lives.’ Annabel Yung reassured him: ‘Nothing like that is going to happen to you! But okay, I promise.’ Like most people his age, Mr Yung did not execute an advance medical directive, nor did he talk about his express wishes, other than this one occasion.
One year after the accident, Mr Yung has emerged from VS, in which he had no awareness of himself or his surroundings, into a minimally conscious state (MCS), a condition in which a catastrophically brain-injured patient shows signs of some intermittent awareness of himself and his surroundings. During periods of awareness Mr Yung will vocalise, shake his head, or make hand gestures which have no clear meaning. These episodes seem to exhaust him, and much of the time he appears unresponsive. He is cared for at home, by Annabel, his parents, and two domestic helpers, Rowena and Angela. While the children are in school, Annabel works part-time, to bring some income into the household.
Annabel has been responsible for making decisions about Mr Yung’s care, in close consultation with his parents, who are deeply involved in his care and in helping Annabel to care for the children. One Sunday afternoon, she brings up a difficult topic, ‘You know, Nigel and I once talked about what he would have wanted in a situation like this. We’d just seen a TV programme about a person with a severe brain injury – not exactly like Nigel, but pretty close. He said, very firmly, that he did not want to be kept alive in that situation, if there was no hope of recovery. He never wrote it down – which is ironic, he was an accountant, so precise about figures and forms – but I think this was very difficult for him to think about. The idea of not being active, not being involved in the children’s lives, really bothered him. So he told me, “Let me go.” And it’s been bothering me all these months – I’ve held out hope that his brain would recover, but it hasn’t, so I’m not doing want he wants, and this limbo is horrible for the children.’
‘What are you saying, Annabel?’ said Mdm Lam, her mother-in-law. ‘I know you’re tired. But we can’t give up hope that he will recover. I’m sure Nigel is “in there” and that he wants to get better, too. Sometimes he looks like he’s smiling… .’
‘But what if he’s just barely able to understand how badly his brain is injured? That sounds like torture to me. Maybe that’s why he moans and shakes his head. Maybe he’s telling us that he doesn’t want to live like this.’
‘Well, let’s not talk about this anymore,’ said Nigel’s father. ‘I can see it’s upsetting you both.’
After this conversation, relations between Annabel and her in-laws become strained, although they continue to see one another every day and to collaborate in caring for Mr Yung and the children.
Mr Yung’s physician, Dr Cho, works in the Neurology Department at a hospital nearby. One morning, Annabel arranges to meet Dr Cho at his office. When she arrives, she tells Dr Cho, ‘Thank you for speaking with me privately. I don’t like talking about Nigel in front of him. It seems impolite, even though I don’t think he understands what we’re saying.’
‘Tell me what’s on your mind. How are you holding up?’
‘Oh, me? I just carry on, and focus on the children. But it’s been a year since the accident, and Nigel has simply not improved since he was weaned from the ventilator. He can breathe on his own, okay. I understand that he’s not in a coma, and that he’s not in a vegetative state anymore. But he’s not getting any better; he seems to be stuck where he is. I know my mother-in-law thinks that he’s ‘in there’ – but as I understand his condition, I don’t think that’s correct. He’s not like a person who is ‘locked-in’ but understands everything that’s going on, right? I… I can’t imagine what it’s like to be Nigel, to have just a little bit of awareness.’
‘Annabel, do you want to talk with a social worker? Maybe it would be good for you to have someone to talk with.’
‘No, what I want to know is… is it wrong to keep Nigel alive – with the feeding tube – if I’m pretty sure this is not what he would have wanted for himself or his family? Can I change his care plan?’
Decisions on the care of an adult who has lost decision-making capacity
Commentary by Nicola S. Peart and Calvin W. L. Ho
Mr Yung’s family members have different perceptions of his condition and future prospects. The most important and pressing issue confronting Mr Yung’s family is their need for greater clarity about his current medical condition and prognosis to enable them to discuss with the doctor what to expect and what to do about Mr Yung’s treatment.
In this case, Mr Yung lacks mental capacity for decision-making in relation his own treatment. Section 4 of Singapore’s Mental Capacity Act (MCA) states that a person lacks capacity if he is unable to make decisions for himself in relation to a matter, in this case – ongoing treatment, because of an impairment of the brain. Section 5 stipulates that an inability to make decisions means that he is unable to:
- understand the information relevant to the decision, given in a way that is appropriate to his circumstances
- retain the information for as long as necessary to make the decision
- use or weigh the information as part of the decision-making process
- communicate the decision by whatever means
Information relevant to a decision includes information about the reasonably foreseeable consequences of deciding one way or the other or failing to make a decision.
A further key fact in this case is that Mr Yung had made no formal advance decisions. He has no Lasting Power of Attorney (LPA) or legally valid Advance Medical Directive (AMD). Even if he had either of those, they would not apply to a decision to withdraw hydration and nutrition, which is what his wife believes he would want. Section 13(8) MCA does not allow an LPA to make decisions about the carrying out or continuation of life-sustaining treatment or any other treatment that a doctor reasonably believes is necessary to prevent serious deterioration in the patient’s condition. An AMD cannot be actioned unless Mr Yung is terminally ill and death is imminent. Any decisions in relation to Mr Yung therefore have to be made by the doctor in Mr Yung’s best interests.
Deciding for Mr Yung
In determining what is in Mr Yung’s best interests, the MCA stipulates that the doctor must consider ‘all relevant circumstances’ and in particular:
- Whether it is likely that Mr Yung will at some time have capacity to make the decision about whether he wants treatment withdrawn; that depends on the clinical prognosis.
- Whether with assistance Mr Yung can be enabled to participate as fully as possible in any decision affecting him.
- The doctor must not be motivated by a desire to bring about Mr Yung’s death.
- The doctor must consider, as far as is reasonably ascertainable,
- Mr Yung’s past and present wishes and feelings (and in particular any relevant written statement made by him when he had capacity). So even though Mr Yung merely expressed his wish verbally, it is still relevant.
- Mr Yung’s beliefs and values that would be likely to influence his decision if he had capacity.
- Other factors that he would be likely to consider if he were able to do so.
The doctor should take into account the views of several parties as to what would be in Mr Yung’s best interests and, in particular, as to his wishes, beliefs and values, and any other factors that he would be likely to consider. Such parties must be consulted if it is practicable and appropriate, namely:
- anyone named by the person to be consulted on the matter in question
- any one engaged in caring for the person or interested in his welfare: this would include not only his wife and parents, but also his children and even Rowena and Angela
- any donee appointed under a LPA, if one was made, and
- any deputy appointed for the person by the court.
Thus, the MCA places the patient at the centre of the best interests test. It is a patient-specific test, hence a subjective test. The test is not what a reasonable person in the patient’s position would want. It is the patient’s views, beliefs, and values.
His statement to his wife, while it is not legally binding, is clearly relevant to the decision. This was a statement made after watching a TV programme and may not have been fully thought through. But on the other hand, the programme dealt with a very similar situation to the one he is in now. Further enquiries may provide more information about whether he had any further encounters or discussions with others about treatment in these kinds of circumstances. The statement does at the very least provide an indication of what Mr Yung thought was a life worth living. It is also unclear how long before the accident Mr Yung’s remark to Annabel was made. Preferences do change over time, but the promise that Annabel made should not be easily dismissed. She clearly feels morally bound by it and believes it expresses his view.
Other factors relevant to his best interests include the long-term prognosis, the effect his condition is having on his wife and children. A primary concern of his was the financial impact that his condition will have on them. She is only able to work part-time, so income is limited. His concern about his family is part of his value and belief system.
It is also relevant to consider what he would think about his parents’ reaction and what a decision to withdraw treatment would have on their relationship with his wife and children. Further information would have to be gathered about his relationship with his parents and what he might think of the developing rift between his parents and his wife and children. Assuming he would see his parents’ continued involvement with his wife and children as valuable, it will be important for the doctors to involve them in discussions. Providing greater clarity about the prognosis might assist in the parents’ understanding and the wife’s. It may take time, but it may be in Mr Yung’s best interests if his parents supported the decision to withdraw treatment, so that they will continue to be involved with the care of his children and the support of his wife.
Annabel’s request to re-evaluate the goals of the care plan should be plainly addressed. At the very least there should be discussion about life-sustaining treatments in the event of an infection, heart attack, or other setbacks requiring treatment.
A view on best interests from the Courts
The Singapore MCA is closely worded in accordance with the UK MCA. The UK Supreme Court recently applied this legislation in Aintree University Hospitals NHS Foundation Trust v James  UKSC 67, where it held in respect of a minimally conscious patient that the question was not whether it was lawful to withdraw or withhold treatment, but whether it was lawful to give or continue treatment. The question is not whether it is in the best interests of a patient like Mr Yung that he should die, but whether it is in his best interests to prolong his life by continuing to provide hydration and nutrition, which the House of Lords described in the case of Airedale NHS Trust v. Bland (1993) AC 789 HL as invasive medical care.
While there is a strong presumption in favour of preserving life, it is not absolute. Providing ongoing life-sustaining treatment is not necessarily in the patient’s best interests if it provides no benefit to him and is burdensome. What benefit is ongoing treatment providing him? Does he have a life that he would consider worthwhile? Unlike the patient in Aintree, it seems that Mr Yung is in a lesser form of conscious state. Although he is able to vocalise, shake his head, and make hand gestures, it is unclear what they mean. Is there evidence to suggest that he is conscious of his family being present? Is there any evidence of him having any enjoyment? There was such evidence in the Aintree case. In arriving at a view of Mr Yung’s best interests, the task of Mr Yung’s doctors (taking a leaf from this recent case which drew upon the MCA in the UK) is to seek the answers to questions like these.
Ultimately, the Court in Singapore has the authority to decide if it is lawful to discontinue artificial nutrition and hydration in Mr Yung’s case.
Commentary by Peart, Nicola S. and Ho, Calvin W. L., ‘Decisions on the care of an adult who has lost decision-making capacity’, 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.
Value conflicts in care relationships
Commentary by Michael C. Dunn
People hold different values at different points in time, and these values emerge in every medical encounter. It is vitally important that clinicians recognise the need to attend to people’s values when making medical decisions with (or on behalf of) patients, and in the longer-term planning of patients’ care. Particular difficulties can arise in cases like Mr Yung’s. Here, two very practical problems present themselves in an emotionally fraught and challenging situation. There is uncertainty about Mr Yung’s values, and there is disagreement between how Annabel and his parents have interpreted what would be best for Mr Yung. How should these two problems be addressed?
Making decisions at the right point in time
It is important to note that the practical challenges facing Dr Cho in this case could have been negated if they had been dealt with proactively at the earliest possible opportunity. If Dr Cho had convened a meeting with Annabel, Mr Yung’s parents, and his other caregivers soon after his accident, when he was intubated in the intensive care unit, the information reported by Annabel about Mr Yung’s views could have been identified immediately. Moreover, extended discussions could have been held between the clinical team and all of Mr Yung’s caregivers about what would be best for Mr Yung. These discussions should have taken into account his current condition and uncertain prognosis, and instigated prior to commencing artificial nutrition and hydration and other life-sustaining interventions such as antibiotics. Regardless of the stress that may result from instigating such conversations in short time-frames, in the immediate aftermath of life-threatening injury, doctors should act to identify whatever information is available about the patient’s preferences relevant to current and future decisions about medical interventions.
Failing to make decisions at the earliest possible opportunity may lead to additional stress in the longer term, and a care plan being devised that might not be ethically justified. In this case, it has also meant that new information about Mr Yung’s values has only come to light a year after his accident. The challenge for Dr Cho now is to clarify Mr Yung’s values, determine whether these values ought to shape Mr Yung’s care plan, and to address value conflicts among Mr Yung’s family members and his other caregivers.
Identifying different values
Because of the life-changing impact of his brain injury, Mr Yung cannot articulate his own values. Dr Cho is therefore unable to make decisions that are directly informed by Mr Yung’s views. However, Annabel has expressed her interpretation of her husband’s wishes, and what this means for his care going forward. Mr Yung’s parents, on the other hand, endorse different values. Mdm Lam, Mr Yung’s mother, believes her son will recover, that his feeding tube should not be removed, and that this decision would reflect her son’s current view on his situation.
The other individuals involved in Mr Yung’s care have not expressed their views clearly. Mr Yung’s father’s only contribution is to intervene to prevent on-going disagreement between his wife and daughter-in-law. Dr Cho is silent on which course of action would be best for Mr Yung, and Rowena and Angela have not been active participants in the discussions held thus far.
What are Mr Yung’s values?
Annabel presents information to Dr Cho and Mr Yung’s parents that she has unique insight into Mr Yung’s values, and how these would bear on his current situation. Annabel reports that her husband stated that he would not want to continue to live with a serious brain injury on the grounds that he would be inactive and unable to play a role in his children’s lives.
Does this statement reported by Annabel reflect her husband’s values, and should it be drawn upon to guide current decisions made about his care? These are two separate questions, and they should be treated independently of each other.
The first question is a factual matter, and turns on the quality of the information that Annabel is providing. Mr Yung’s comment upon watching the TV programme was not written down. It is being reported by his wife, and there is uncertainty about whether Annabel’s report of Mr Yung’s values would apply to his current situation. Is there any other evidence available to reinforce Annabel’s viewpoint? Might Mr Yung’s children, or his caregivers Rowena or Angela, be able to corroborate his attitudes towards living with severe brain damage, or do these individuals lack prior knowledge of Mr Yung’s values? Is it possible that Annabel’s report of Mr Yung’s views reflects her own values rather than those of her husband? These questions need to be addressed in judging whether Annabel’s report of her husband’s values should be considered when making decisions about the withdrawal of his feeding tube.
The second question is an ethical question. If Annabel’s account of Mr Yung’s values is accurate, should these values be followed in making decisions made about Mr Yung’s care in the present? The legal requirements and the ethical arguments differ here. From an ethical standpoint, there is broad consensus that a patient’s previous values ought to be given significant weight in making decisions on behalf of that patient. However, these values may not be overriding. Other good ethical reasons should also be considered in making this decision. In Mr Yung’s situation, these reasons will concern his prognosis, his current subjective experiences, and the objective value of human life.
Addressing value conflicts
An important first step in addressing value conflicts between individuals is to clarify the nature of the conflict, and the reasons for disagreement. It is helpful to make this process explicit. It is also a very practical exercise that could assist in managing the emotional difficulties that Mr Yung’s situation presents to those involved in his care.
Continually reviewing Mr Yung’s care plan in light of the values of all those involved in his care is an important aspect of this process. These reviews should be instigated by Dr Cho, the professional responsible for Mr Yung’s care plan, if Mr Yung’s condition changes, or if new information about Mr Yung’s past and present values is presented by those involved in his care. Reviews can ensure that all individuals’ values and viewpoints are heard and considered. They can also help to clarify whether any disagreement between individuals reflects differences in Mr Yung’s caregivers’ personal values, or differences in how these individuals are interpreting Mr Yung’s own values.
Dr Cho’s decision to involve a social worker to support Annabel is commendable, but does not replace this requirement for reviewing Mr Yung’s care in light of the concerns she has articulated. Equally, the passive role that Dr Cho has adopted in the face of disagreement between Annabel and her mother-in-law is insufficient. He should actively share his own views on Mr Yung’s condition, why he holds such views, and act positively but sensitively to clarify any misunderstandings about Mr Yung’s prognosis that might have given shape to the differences between Annabel and Mdm Lam’s perspectives.
When the outcome of these periodic reviews leads to changes in Mr Yung’s care plan, conflict between individuals may increase rather than decrease. If the decision is made to withdraw his feeding tube, an already difficult situation could then have negative, life-changing repercussions on those closest to Mr Yung. One option would be for Dr Cho to ensure that appropriate psycho-social support is provided to all caregivers, including professional caregivers. This support might include family therapy if there is hostility between the family members, or grief counselling when the decisions made cause significant distress to those involved.
Commentary by Dunn, Michael C., ‘Value conflicts in care relationships’, 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.
Patients with severely impaired consciousness and their families
Clinical perspective by Effie Chew and Derek Soon
Dr Cho’s most important task in this situation is to accurately determine the extent and prognosis of Nigel’s injury and communicate this in the most transparent and unambiguous terms with Nigel’s family. Dr Cho should provide as clear a clinical picture as possible, explaining to them what Nigel may or may not be capable of, cognitively and physically, and what Nigel can realistically hope for in terms of recovery.
Caring for persons with severely impaired consciousness is extremely difficult. It can be unrewarding caring for a person who is unable to respond. Most are waiting for their loved one to wake up. There can be moments when there is resolve to care to the very end; and moments of guilt, of giving up hope. There is a high incidence of depression, prolonged grief, and anxiety in family members of patients with severe disorders of consciousness. Spouses in particular may feel isolated and trapped in a marriage where their emotional needs are not met. Some describe this as being neither married nor single. Over time, this can put significant strain on the family members – physically, emotionally, and financially.
Annabel is no exception. In addition to being Nigel’s primary caregiver, she lives with the uncertainty as to whether Nigel would have wanted to carry on in this condition. Nigel’s general statement just before his accident, in the absence of a documented and clear advance directive, leaves his doctors unsure how deeply Nigel considered the position when he made the statement. However, it is a great source of internal conflict and guilt for Annabel.
Adding to Annabel’s distress is her disagreement with her in-laws surrounding Nigel’s intentions and level of awareness. Mdm Lam’s remarks suggest that she perceives her son as cognitively intact and even happy, while Annabel’s remarks suggest both a closer involvement with the medical team and the perception that her husband may be experiencing ‘torture’. Much of this arises because Annabel and her in-laws have conflicting and often incomplete understanding of Nigel’s condition. This is further complicated by the inherent ambiguity surrounding conscious states. Although we often talk about the different states (vegetative state/minimally conscious state (MCS)/full consciousness) as sharply distinct, the reality is more that of a continuum from the total absence to the total presence of different conscious states. MCS occupies a vague middle ground, embracing a range of levels of unconsciousness, with varying prognoses.
Whatever Nigel’s current neurological state may be, tension and the potential for conflict increase when caregivers disagree about what a patient is capable of experiencing, or when caregivers are misinformed. Regular conferences that include Annabel, Nigel’s parents, and also the domestic helpers can help caregivers stay on the same page concerning Dr Cho’s working understanding of Nigel’s clinical status, and what he may or may not be capable of in the future.
Dr Cho’s team should also inform the family of rehabilitative and treatment options available to Nigel, including techniques and devices to facilitate communication and recreational activities for patients with MCS. While Nigel may still not have the mental capacity for consistent decision-making, meaningful interaction with his environment and caregivers would improve his quality of life and make caring for him more rewarding. The potential to improve his quality of life may make a difference in determining what would be in his best interest.
Finally, Annabel’s direct question – “Can I change his care plan?” – needs a direct answer from Dr Cho, with clear and accurate reference to law and practice. He should also continue to try to offer Annabel some support for herself – social services, counselling, respite time – even though she has initially dismissed these offers.
Clinical Perspective by Chew, Effie and Soon, Derek, ‘Patients with severely impaired consciousness and their families', 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.