This case concerns an undergraduate whose traumatic brain injury results in locked-in syndrome. His doctors, nurses, and home carers must meet the challenges of understanding his wishes, while coping with repeated hospitalisations.
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This case concerns an undergraduate whose traumatic brain injury results in locked-in syndrome. His doctors, nurses, and home carers must meet the challenges of understanding his wishes, while coping with repeated hospitalisations.
Faizal: Making decisions with a brain-injured patient
Two years ago, Faizal was a 19-year-old undergraduate with a passion for skateboarding. One evening at a local skate park, Faizal fell off a ramp, hitting his head on a concrete pavement. He sustained traumatic injuries to his brain and spinal cord.
As Faizal’s condition stabilised following multiple interventions to treat his many injuries, the critical-care team determined that the brain injury had resulted in locked-in syndrome. As part of the diagnostic process, Faizal’s medical team consulted with a speech-language pathologist, who determined that Faizal was capable of purposeful communication through blinking. Three months after his accident, and following modifications to his family’s third-floor, four-room Housing and Development Board (HDB) flat, Faizal was discharged from hospital.
In the two years since his accident, Faizal has remained profoundly disabled. He has a tracheostomy that helps to protect his airway. At night, his breathing is supplemented with low-flow oxygen. He cannot swallow, so his nutrition and hydration are maintained through a feeding tube surgically placed in his abdomen. Faizal is largely confined to bed. His parents, Mr Abdullah and Mrs Nazilah, provide round-the-clock care for him, with assistance from Ms Deya, an Indonesian domestic worker.
While he was in hospital, the speech pathologist taught Faizal and his caregivers the basics of communication through eye movements, such as blinking for ‘yes’ and ‘no’. He is now able to respond when Deya asks him whether to turn the television on or off, for example.
His most significant ongoing medical problems are persistent deep pressure sores on his thighs and buttocks, which become infected periodically. He also experiences recurrent pneumonia due to his compromised cough and urinary tract infections via his catheter. Since his accident, he has been hospitalised nine times to treat these painful and potentially life-threatening problems, with his parents making medical decisions on his behalf.
Faizal is now 21 years old. A fortnight ago, Faizal was admitted to hospital for a urinary tract infection (UTI), which has been found to be resistant to multiple antibiotics. Faizal remains conscious and is able to respond, via eye blinks, to ‘yes’ and ‘no’ questions about his pain and symptoms.
Dr Len is the senior consultant in charge of Faizal’s care. She is aware of Faizal’s history of recurrent infections and is concerned that further efforts to treat his infection with antibiotics will be ineffective. After consulting with the infectious disease specialists involved in Faizal’s care, she arranges to meet with Faizal’s parents.
Dr Len says, ‘Encik Abdullah, Cik Nazilah – we’re having trouble finding an antibiotic that works. The infection may start to compromise his kidneys. That hasn’t happened yet, but we’re watching his kidney function. If we can’t find an antibiotic that works, we will continue the palliative measures already in place, such as medication for pain from the UTI and for symptoms like fever. He’s also on anti-nausea drugs now, because of side effects of the antibiotics. We want him to be comfortable. But if his kidneys start to fail, we would refrain from emergency interventions, such as cardiopulmonary resuscitation (CPR).’
Faizal’s parents are distraught at this suggestion. His father says, ‘This is our only son – our only surviving child! Faizal’s sister died eight years ago from meningitis. We have devoted our lives to him. Without him, we have nothing.’ His mother adds, ‘Doctor, we see our son every day. We see how his old, cheerful self shines through his eyes. His will to live is strong. We Muslims believe that God allows this to happen for a reason. Everything has to be done for Faizal – everything.’
Dr Len listens to Abdullah and Nazilah and says, ‘All right, we’ll continue antibiotics for now, and we’ll use CPR if we need to. Let’s talk again tomorrow.’
Dr Goh, a resident on Dr Len’s team, is also in the room for this discussion. There is something about this case that concerns her.
In the corridor after the meeting with Faizal’s parents, Dr Goh spots Nurse Siti, the staff nurse responsible for Faizal’s care. Dr Goh has worked with Nurse Siti before and knows her as an experienced critical care nurse. Dr Goh says, ‘Nurse Siti, do you have a minute? It’s about Faizal.’
‘Funny you should mention Faizal,’ Nurse Siti says. ‘I was talking to Deya – she’s the family’s maid. She’s taken care of Faizal at home since his accident. She’s so upset. She speaks Bahasa Indonesia and I speak Malay, so she and I can communicate like a chicken and duck mostly. She is just grateful to find someone here to talk to.
‘She feels so guilty, wondering if she hasn’t been looking after his wounds properly. What could I say? I told her that patients like Faizal often have bed sores, that this is not her fault. But I just think a domestic worker, or his parents, can’t possibly cope with the kind of problems this patient has.
‘Every time we’ve discharged him, I’ve had my doubts as to whether his family and their maid would be able to follow the wound care plan – it’s unpleasant, it’s also painful and they don’t want to hurt him. It’s a stressful case for the nurses, and for you doctors, too – we all hate to see a patient in pain, over and over. And for this poor young man to be locked in – it’s heartbreaking.
‘But you had a question for me – what was it?’
‘During the family meeting, I looked at Faizal’s chart,’ said Dr Goh. ‘I noticed that he’s 21 now – legally, he’s an adult. We know Faizal can communicate by blinking – we communicate with him every day, or at least I do. I think it’s important to acknowledge that he’s there. But when was the last time anyone ever asked him anything other than a ‘yes’ or ‘no’ question? We keep talking to his parents, but he may be able to make decisions – or at least some decisions – for himself.
‘So, my question – how do I bring this up with Dr Len?’
‘I wish I had an answer for you,’ said Nurse Siti. ‘You’ve noticed something that’s been overlooked – and it’s easier to let things keep going as they are. What do you think you should do?’
Teamwork and safe transitions in healthcare
Commentary by Jacqueline Chin
Fragmented care: a cause of moral distress for healthcare providers
In this scenario, Nurse Siti and Ms Deya face a healthcare situation that is difficult on many levels, but we focus here on the fragmentation of care. Siti is dismayed at seeing the patient and his caregivers at home struggling with his multiple hospitalisations for the same problem. Siti is astute, and sees that this problematic pattern of care delivery has to stop. She thinks that Faizal needs continuous skilled nursing care. This is warranted insofar as a process of safely transitioning the patient from hospital to home is not yet in place. Wound care and infection control could be managed well at home, with the right support in place for this family and their domestic helper, and with good communication with care specialists at the hospital or at a nursing home.
Domestic helpers like Ms Deya are a very important part of healthcare support in Singapore, and their needs should be recognised. Deya has day-to-day interactions and in-depth knowledge of Faizal’s health status, and potentially good understanding of his wishes and preferences. However, she is anxious on account of many daily uncertainties, and she worries about her own competence to handle the care role vested in her. While she shares a common language with the family, they are themselves uncertain about resolving day-to-day care management problems. They and Ms Deya should receive comprehensive support and training as part of the care team. A pat on the back by hospital staff can be counterproductive when there are signs that a care plan is not working.
Nurse Siti and Ms Deya, are displaying signs of ‘moral distress’, stress that is experienced when a person perceives the right thing to do but feels forced to act wrongly, or is prevented from acting well due to factors beyond their control. Moral distress in healthcare contexts has many causes. Fragmented care is one of them, but there are others including resource shortage problems, day-to-day conflicts among different parties involved in the care of patients, inconsistencies between policies and practice, and sub-optimal healthcare system and workplace supports. More recently, more diverse causes have been identified, including individual errors of judgement, inadequate knowledge or skill, and personal failings.
Moral distress centres on a person’s sense of responsibility and ability to act for the good of others or their environment. If not prevented or relieved, individuals are often adversely affected personally and professionally, with consequences such as poor health, alienation from colleagues, a lowering of job performance and satisfaction. This could lead to compromised patient care, burnout and higher staff turnover. But acknowledging one’s moral distress and taking action in response to it could also be a positive sign of personal and moral growth, a heightened sense of responsibility to advocate for better patient care, and/or structural transformation within institutions committed to fostering a more ethical healthcare environment.
Planning safe transitions of patient care can prevent moral distress
Faizal is a chronically-ill patient who experiences acute episodes of illness due to problems with his home care plan. While it is, as yet, unclear whether Faizal’s condition will stabilise and he will be able to return home, it is clear that Faizal has long needed a better – safer – care plan. Planning for safe transitions is vital not only when initially transferring from hospital care to home care, but also when reviewing patient care at a later date. To plan a safe transition, Dr Len and her team should have given attention to identifying the needs of Faizal and his caregivers at home, and providing necessary support for them.
Clarifying Faizal’s needs and the roles of different caregivers
Faizal now has an array of life-sustaining medical resources at home: equipment, supplies, a wheelchair, and a hired caregiver. But supporting his family and the domestic helper in their roles will also involve a process of clarifying the roles of parents, helpers, and others, such as siblings. For instance, who in the household has authority to make care and financing decisions? Does Faizal’s family get to relate as a family towards him (after also assuming the role of therapists with responsibility for day-to-day monitoring of Faizal’s needs and the changes in his condition)? Who is providing the nursing care at home? How are those who now have the main responsibility for Faizal’s care being supported in their various roles?
Providing support to caregivers at home
What are the needs of the caregivers themselves? A safe transition to home care depends on caregivers being in good health, experiencing shared team support, and each having adequate respite. As the home has become a ‘therapeutic zone’, the family and their domestic helper are now de facto members of the healthcare team. They have difficult roles to learn that can often conflict with familial patterns of relationship at home. Wound cleaning, for instance, can be a difficult challenge for family members, as they would tend to be highly sensitive to a loved one’s pain. Domestic helpers who undertake this task may feel afraid of reprisals by loved ones for hurting the patient. In some cases, organising options for professional care may need to be organised.
Respectful collaboration in home care settings
Attention should be given to establishing an environment of respect within the caregiving team at home. Clinicians can and often do play a role in exemplifying such respectful attitudes for each member of the team. Caring for the family and their helper may mean affirming a family’s values, acknowledging the helper’s role, and supporting needs. This will involve helping to build up necessary knowledge in often new and risky situations in home life, sustaining their hope, and preparing for the future of the family as a whole.
Giving voice to the needs of the patient
Dr Goh has important concerns. She notices that Faizal’s higher cognitive functions may be intact, and that there is a need to assess how far he is able to make his own decisions even as the healthcare team treats his spiraling infection and possible depression. Communication with Faizal can focus and motivate both patient and care providers on a daily basis. Faizal’s parents’ attention to his every expression attests to this. Communicative care can help patients to express their feelings, both of suffering, and of regard for those close by. Dr Goh’s discussion with Nurse Siti helps her to see that her concerns are shared. She and Siti need to bring these concerns to Dr Len, the team’s leader.
Building a coordinated and responsive care framework helps relieve or prevent moral distress by ensuring clear lines of decision-making and support. By accepting and declaring shared responsibility and openness about moral concerns and pressures, teamwork can help to create trust among professionals, patients, and families within the healthcare system.
Commentary by Chin, Jacqueline, ‘Teamwork and safe transitions in healthcare', 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.
Disability and decision-making
Commentary by Michael C. Dunn
Who is Faizal?
Faizal is the young man at the heart of this difficult story, yet his identity and personality are strangely absent from the information presented in the case. So, who is Faizal?
We know very little about Faizal, yet we are equipped with significant information about his clinical diagnosis and medical needs. We know he has locked-in syndrome, that he requires long-term support, and that he experiences repeated infections that require inpatient treatment. We also know he can make decisions about whether or not to watch television.
Curiously, we have far more knowledge about who Faizal used to be, prior to this life-changing event. We know he was an energetic, studious teenager with a passion for skateboarding. Does he retain this passion, or the desire to be educated? Have his wants, values, and desires changed since his accident? If so, how? These questions need to be prioritised, and their answers should shape any judgements made about Faizal’s care from this point onwards.
It is ethically important that Faizal – as an individual with his own identity, values, and experiences – becomes visible as we work through this complex scenario.
The patient as person
Faizal has a disability, and his impairments are significant. His physical abilities have been radically curtailed by his accident. Yet, Faizal retains the cognitive abilities to develop as an individual, to formulate values and preferences, and to express himself using rudimentary forms of communication.
One important dimension of contemporary healthcare is a move towards patient-centred care. This involves seeing and respecting patients as unique individuals who bring diverse values, life experiences, and feelings to the therapeutic relationship. The rise of patient-centred care has presented significant challenges to medical authority, the concept of expertise, and the ideal form of the clinical encounter.
There are convincing ethical reasons for endorsing this shift in practice. In this case, respecting Faizal’s autonomy requires taking his views into account. Denying Faizal an active role in making medical decisions is to deny him the right of self-determination. Even if Faizal were to be judged to lack the capacity to make his own decisions, respecting his dignity would still require his current feelings and previous values to shape the decisions made on his behalf.
Dilemmas can arise, however, when seeking to provide care that is tailored to the individual patient whilst also meeting the needs of other patients, or providing efficient, cost-effective treatments. Faizal could make personal requests for interventions that are not clinically indicated, and this would be troubling for Dr Goh and Dr Len. For patients like Faizal who require long-term care beyond the hospital setting, there are good reasons for thinking that requests relating to personal or social interventions ought to be met by Faizal’s medical team, because these advance Faizal’s broader quality of life. However, there will always be limits to which patients’ requests are met, and careful judgements will need to be made.
Patient-centred care and profound disability
Progress in providing patient-centred care for people with disabilities has been slower. Reports of patients with disabilities being silenced in the management of their diseases or in the formulation of care plans are common. Reviewing Faizal’s case through this lens suggests that Dr Len has sidelined Faizal in decisions about his care in exactly this way. We can contrast this with Dr Goh’s more considered approach to Faizal, attending to him as an active participant in the decision-making process.
Dr Goh’s view that disabilities challenge, rather than prevent, Faizal playing a role in decisions made about his care should be embraced. Faizal’s disability does not depersonalise him – he remains more than the sum of his impairments. As such, the starting point should be that Faizal is a person able to make decisions, and his parents should not automatically replace him as the locus of the medical encounter.
Disability rights advocates have long endorsed the slogan “Nothing about us without us” to challenge a culture in which people with disabilities are automatically excluded from decision-making. This position is now endorsed by international conventions and national law. The UN Convention on the Rights of Persons with Disabilities that the Singaporean government signed in 2012 states that people with disabilities have the right to enjoy the highest attainable standard of health, and should be supported in their right to full and effective participation in all aspects of their lives. The Mental Capacity Act requires doctors to assume that all adult patients have mental capacity until it is shown otherwise.
Faizal should be supported to make decisions about his own care
In the short term, Dr Goh is obliged to convey to Dr Len relevant information about Faizal’s abilities, and Dr Len has an obligation to act on the basis of such information. The limited role given to Faizal’s views should not be allowed to continue.
In the longer term, there needs to be a reorientation in the hospital towards thinking about patients like Faizal as active partners in a collaborative medical decision-making process. Additional and appropriate decision-making supports and communication aids should be made available to Faizal and other patients with physical and cognitive impairments to enable them to express their values and preferences.
Now that Dr Goh has noticed what has been overlooked – that Faizal is an adult – she and her colleagues should aim to foster a new collaboration among Faizal and all of his caregivers. This will take much effort: to evaluate Faizal’s decision-making capacity, including his ability to communicate decisions, and also to help Faizal’s parents understand why Faizal’s own preferences matter, and to support their son in this new way.
Commentary by Dunn, Michael C., ‘Disability 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.
The locked-in patient as social person
Clinical perspective by Derek Soon
From the outside, patients with locked-in syndrome (LIS) appear as though they are unconscious or dead, devoid of voluntary movement apart from eye movements. However, on the inside, their minds are often as active as before the injury, and apart from contemplating a life of helplessness and dependence, they face the terrifying prospect of being misdiagnosed and overlooked as ‘unconscious’. There can be few things in life as frightening as this.
I remember a patient I encountered who had suffered a brainstem stroke, and as a consequence developed LIS. He lay unmoving, as if unconscious, with tears streaming down his expressionless face, betraying the terrible anguish beneath the placid surface. I also remember an elderly lady who developed LIS due to a brainstem infection. When she was brought into hospital, she appeared to be in a coma, entirely unresponsive to conventional stimuli. Her husband sat by her bedside for hours each day, talking to her about cricket, which she loved. Little by little, she regained movement, first in her eyes, then in her fingers. A year later, she was able to use a wheelchair. Despite her story, patients with LIS face an uphill battle. Neurological recovery is variable, and modest for most. Moreover, LIS sufferers remain medically fragile, susceptible to chest infections, bed sores and other complications of immobility.
Influencing our environment and interacting with our peers is integral to our existence as social animals. People like Faizal are not just cut off from such activities, but (at least early on) face the frightening prospect that their caregivers may not recognise their consciousness and thus their capacity for communication.
The importance of early recognition and diagnosis cannot be overstated. The recognition that these patients are conscious and sentient facilitates the establishment of communication. In doing so, the patient is brought back within the circle of humanity, and regains an important measure of self-determination. Clinical neurologists and psychologists achieve diagnosis and psychological review through careful clinical assessment, supported by investigatory evidence (imaging, electroencephalography (EEG)) of preservation of cerebral activity.
The next important step is establishing a mode of communication. This is done by speech and occupational therapists. Solutions can vary between patients, depending on the specific level of disability, and the extent to which higher cognitive processes are preserved. Nonetheless, once a method is established, great things can be accomplished. Jean-Dominique Bauby, a famous LIS sufferer, wrote an entire book using a system of communication through eye-blinking.
In this context, it is clear that communication with Faizal can be greatly improved. Faizal may have much to tell us about what he thinks, and about what he does and does not want. In caring for somebody like Faizal, it is important not to lose sight of him as a thinking, feeling human being, with as much a right as all of us to participate in decisions involving his healthcare.
Clinical Perspective by Soon, Derek, ‘The locked-in patient as social person', 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.