By Zora Zakaria and Vimbai Chenyika
As our world rapidly advances terrifically through technology in the medical world. Whether that means discovering new cancer treatments with more efficiency, or repairing a human liver using lab grown cells NIHR (National Institute for Health and Care Research)[1], there may be more opportunities for malpractice, even through routine operation within our NHS. Medical law and Medicine are laid hand in hand with the main trajectory to protect all patients, ethically, and medically, which can give a voice to the most vulnerable within our society. [2] Medical law and ethics encompasses “the rights of patients and responsibilities of doctors with reference to complex moral debate”, covering angles such as of the right to consent or refuse treatment, medical negligence, organ donation and many more medical practices. This gives patients legal rights at vulnerable stages of their lives. The NHS was sent back [3] £2.5 billion in 2023, paid in compensation, due to medical malpractice aiming to reinforce patient safety and patients rights.
The NHS is an essential part of British society, one of the few totally publicly-funded healthcare services in today's world. Our doctors, nurses and all of the non-medical staff (who are often overlooked) pour their energy and passion into saving millions of lives each day, whilst meticulously clocking in strenuous hours each week. [4] Following the end WW2, the historic first majority-Labour government led by Clement Attlee passed the “National Health Service Act '' on the 5th July 1948, cementing the foundations to what we know the NHS to be today. The opening of this healthcare system provided free services for the nation, by taking a fraction of workers’ wages to fund it. This enacted the “establishment of a health service to secure improvement in the physical and mental health of people and the prevention, diagnosis and treatment of illness” [5], which has left a fruitful legacy to this day. Without a doubt, the NHS is a vital part of our lives; most likely people reading this article have used a part of the NHS’ services. Whether this be on your day of birth, or booking a routine check up with the GP, or most recently, vaccinations during the pandemic in 2020. At eight o’clock sharp we clapped for our heroes; an emotional tribute for our frontline workers, holding onto the core of the [6] Nursing and Midwifery Council (NMC), prioritising patients, and treating the nation with respect and compassion at the front line.
You have most likely seen recent news articles, titled like the following: “NHS England waiting list hits record high as 7.6m on hold for routine treatment” [7] with waiting lists averaging 11.3 weeks for NHS patients, or “Junior doctors join consultants for first joint strike in England.”[8] We cannot blind ourselves from the truth. Our world is changing: with inflation, the cost of living crisis, and what seems to be a sea of patients waiting for treatment. It is only inevitable that doctors are trying to get compensation for their *‘£14 per hour wage’ [9], but how long will it take for the doctors on strike to reach their final straw? A landslide of all medical negligence claims in the UK are from obstetric, making up to [10] 62.5% of all claims, with orthopaedics, in 2021/22 year the majority of all claims were from the maternity sector, and other from emergency medicine and obstetric claims and orthopaedics. The catastrophic pressures that our healthcare team is dealing with are well known, and are piling on - with stresses including political battles, strikes and billions of pounds worth in debt.
This article uncovers medical law - more explicitly the mental capacity act , 2005. - on the Bournewood case and how through medical law justice has been received not only for the people involved but for other vulnerable members of our society . Also, how the European court of human rights responded to this resulting in the amendment of the mental capacity act .
Introduction to the Bournewood Case:
[11] In Surrey, 1994, Mr and Mrs E adopted a 49-year-old autistic man HL, under a ‘resettlement scheme’ from Bournewood Hospital. They aided him with day-to-day tasks such: a washing, dressing and providing assistance to him -as he was unable to verbally communicate- providing him with a new place to call “home.” It was a “challenge”, but “rewarding to see how much HL had benefited from living in a family setting” , said Mrs E.
An incident troubled HL on the way to placement, which caused him to be confined under the Mental Health Act 1983, due to the hospital’s belief that it was to his “best interests.” Mr HL was given no say in the decision. The foster parents were told that they would not be allowed to visit him, and they were sent a letter “thanking [them] for agreeing not to visit”, despite no attempts or “consultation”, to include the foster parents in the decision-making or to speak on behalf of HL. In an distressing documentary, the family was traumatised; they found Mr H in a “terrible state” [12], he looked “half starved”, over a span of four he was neglected and abused: he was left “blackened toenails”, as if they had been “stepped” on to inflict pain, and lots of scar tissue on his face.
The Medical Aspects of the Bournewood Case:
Autism is “a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave […] it is described as a ‘developmental disorder’ because symptoms generally appear in the first 2 years of life. [22] People with Autism Spectrum Disorder (ASD) [13] often have problems with social communication, interaction and restricted or repetitive behaviours or interest.” However, it is important to stress that being on the autism spectrum is not an illness, with treatments to completely eradicate it permanently [14], but some people need support to help them with certain daily activities and tasks, with the addition of medicine and various forms of therapy. This resulted in HL going to placement once a week as part of the resettlement requirements. HL took public transport to attend the placement. However one day, the driver took HL a different route, collecting others on the way, which agitated HL and made him feel uneasy. Some autistic patients struggle with changes in routine; the change in HL's normal routine caused neurological overstimulation, and his reaction led to HL’s confinement in hospital.
Due to the wide spectrum of autism, looking at brain scans alone for answers or a diagnosis will not clearly show autistic traits. However, the scans do allow us to see subtle patterns in neurological activity. Dr Jeffery S. Anderson, a professor of radiology at the University of Utah said that, “just the normal differences from person to person tend to be much more dramatic than the subtle systematic changes associated with autism,” [15] suggesting that this is a rather complex medical prognosis.
[16] The Brain is split into two hemispheres, the left and right. These are joined by a band of nerve fibres known as the corpus callosum. The left hemisphere controls the right hand side of the body, and the left hemisphere controls the right. The brain is further split into lobes: frontal, parietal, occipital and temporal.
The main sections of the brain include:
The cerebrum - controls voluntary actions and conscious activity.
The cerebellum - controls muscle coordination.
The medulla oblongata - controls involuntary actions (unconscious activities), such as breathing and heart rate.
Other vital areas in the brain include:
The hypothalamus, which controls homeostasis.
The pituitary gland, which controls the actions of other glands in the body.
The cerebral cortex, (a thin layer on the outside of the brain) also known as grey matter, contains cell bodies of neurons; it has many folds and creases to increase its surface area to volume ratio, enabling it to facilitate a greater number of neurons. Beneath this, is known as white matter or the cerebral cortex, containing myelinated axons of neurons.
While researchers do not fully understand the fullest extent of autism, they do know that there are a few differences: asymmetry of the brain (from the left and right side) is vital for the brain's organisation. Each side of our brain is vital for different functions. In neurotypical people, this tends to be lateralised (dominant) to the left side, but people with ASD tend to have a reduced left leaning lateralisation.[17] Lorenza Culota PhD, from University Feinberg School of Medicine, Centre for Autism and Neurodevelopmental, referenced from San Diego State University, concluded there is a difference in grey matter in ASD people. In all people, grey matter ripples into peaks and troughs called gyri and sulci”. In autistic brains there are more folds in the lobes. The increased folds in this location create a shift in neurological activity. Dr Culotta stated that “it [is] proposed that strongly connected cortical regions are pulled together during development […] In the autistic brain, the brain's reduced connectivity, known as hypoconnectivity, allows weakly connected regions to drift apart, with sulci forming between them.” This has a ripple effect into language production for people with ASD [17].
Another view from Dr Anderson suggests that “it may be the timing of the brain activity [that is] abnormal. [The] result of that is the brain is more stable in autism… [the brain] is not able to move between different thoughts or activities as quickly or as efficiently as someone without autism.” Electrical impulses and the connections between the neurons are vital for brain activity, hence why Dr Anderson believes its “the electrical activity [that] holds the basis of thought behaviour and how the brain functions.”[17]
This is only the start of our journey to deduce the intricacy of autism, but as technology develops, today’s theories and ideas may eventually be made clearer.
The Legal Aspects
The Legal Importance of Informed Consent
It is essential to obtain a patient's consent prior to treatment but due to the lack of insufficient information and inadequate attempt to present the information to HL in a comprehensive manner , he was unable to make an informed decision. ‘Every human being of adult years and sound mind has a right to determine what shall be done with his own body.’ (Cardozo J, Schloendorff v New York Hospital {1914} 211 N.Y.125). Despite this quotation being American, UK courts acknowledge this as a highly plausible ground stone for consent.It is unlawful for a medical professional to touch their patient without their consent and applying this to this case , those who were in charge of HL have committed a crime. In extreme cases this contact between the patient and medical professional can amount to actual bodily harm ( section 47, Offences Against the person Act 1861).
The Bournewood Case was a groundbreaking moment in legal history, causing legislative changes in December 1997. The Court of Appeal ruled it unlawful to admit an autistic adult to a psychiatric hospital without their consent. Additionally, the European Court of Human Rights stated that this case was unlawful as there was an absence of the use of formal legal powers. A recurring theme that contributed to the unlawful nature of this case was the deprivation of liberty experienced by the victim (HL). Deprivation of liberty occurs when someone is under supervision and control, and lacks the freedom to leave confinement.
The Mental Health Capacity Act 2005
Section 2 (1) of the mental health capacity act (MCA) states that “a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.” This applies to HL and therefore is deemed to lack the necessary capacity to make a decision; however the medical professionals that were in charge of his informal treatment had detained him and this detention was unlawful under Articles 5(1) and 5 (4) of the European Convention. This case has led to the Bill being challenged to find a solution that safeguards vulnerable individuals such as HL.
The positions and power of authority were abused, and the victim was confined into an institution against his own will. In a video adaptation of this case {12} by the carers of HL, he had endured excruciating physical abuse, which is a breach of the prohibition of torture [Article 3](20), which entails that no one shall be subjected to torture or inhuman or degrading treatment. This was wilfully ignored in the Bournewood Case, continuing the cycle of power abuse against the vulnerable. After careful consideration, the Court determined that any patient who was incapable of consenting to informal admission could only lawfully be admitted under the statutory procedures of the Mental Health Act of 1983, in which a sufficient number of the criteria had not been met, resulting in HL’s unlawful detainment.
Medical resignations
In a video adaptation of this case [12], his parents shed light on his return home; trauma from the hospitalisation of HL. “[HL] was “standing in the corridor bashing his head, there was blood all over him, all over the walls, all over the door…he was so neglected.” We must deduce was this neglect due from the active choice from staff, or it is a systemic issue of how the NHS is run today - with limited staff members, who are overworked and striving their way through at the front line.
In the United Kingdom we have 2.8 doctors per 1000 people.In comparison to countries with similar GDPs; in Europe, the average doctor per 1000 people per capita is 3.4 per 100. This places the UK 25 years behind the other European countries in terms of development of doctor to patient capital. In 2022, approximately 43% of NHS staff worked up to 5 hours of unpaid overtime in an average week [26]. Due to these hours worked above contracted hours, many of our medical staff's work often goes unnoticed and underpaid. This could lead to vital exhaustion [31] and chronic stress and impact on the patient's quality of care. A study from the Stanford University School of Medicine found that doctors who had reported at least major symptoms of burnout were more than twice as likely to make medical errors [29]. With the strains on our NHS and an increasing number of medical professionals leaving each year due to the extent of emotional and mental exhaustion, perhaps if HL had more care - by the government providing more adequate working conditions for the NHS staff - maybe HL’s experience could have resulted in an increased positive outcome.
The current medical standard makes it possible to find methods of communication between autistic people who struggle with communication, but due to the lack of staff and substantial hours, our medical staff are not in a position to be able to give the care that they initially set out to achieve at the start of their NHS journey. Dr Rachel Clarke (an Oxford graduate) recorded her experiences of the NHS in her critically acclaimed book, ‘Your Life In My Hands’. In an extract from her junior doctor diary Rachel intricately conveys her experience of the NHS, and her time as a junior doctor, as well as the political topics such as the friction between the government and junior doctors.
During the early stages of being a junior doctor, Hannah, another junior doctor, and a close friend of Rachel, was described to be a stellar doctor, “ [someone] who you would pray that your loved ones might be treated by in hospital” distressingly expressed how she “ can't do [her job] anymore” . She was left deflated and defeated; even after the many strikes from the junior doctors, and impaling calls to the politicians, they were still unheard- “I’ve told them thousands of people are going to die, I can’t keep people safe if I'm carrying two other doctors bleeps and have double the amount of patients to look after.” Rachel’s departure from the field was only a reflection of what many other medical personnel are experiencing too. Dr Clarke suggested that this was due to the government “denying” and not directly addressing these gaps in the rotas for which many doctors and nurses experience [30]. This recurring theme of underappreciation and not feeling valued reflects back onto the patient care, and could be a significant factor in the Bournewood Case so systematically, our medical staff's hands are tied.
The Ethical Aspects
In this seminal case, HL, an autistic adult, who was incapable of consenting to treatment, was inhibited from escaping his confinement due to him not having autonomy over his hospitalisation. In addition to this the exclusion of his medical representatives, Mr and Mrs E in this decision left HL ostracised. It could be argued that the medical staff were not able to abide by the Nursing and Midwifery Council’s guidelines (NMC) [24], violating the rule of not “[reducing] as far as possible, any potential for harm associated within practice.” Following his discharge from the behavioural intensive unit, HL had many superficial wounds, allegedly caused by a combination of self harm, other patients, and through restrainment administered by staff [25]. HL was unable to make an informed decision as he was not provided with sufficient information to give consent. Despite this, the absence of consent was not enough to detain him. It is exemplified that the medical professionals that were responsible for HL had assumed what his opinion was towards his institutionalisation which shouldn't have been the case, instead clarification should have been requested .
This idea is further supported by Lord Mill who was a judge of the High Court Queen's Bench Division. He stated that “a doctor has no right to proceed in the face of objection, even if it is plain to all, including the patient, that adverse consequences and even death will or may ensue.” HL’s rights to be institutionalised by the Behavioural Unit were finite due to the absence of protection by the law, as a result of the Mental Health Capacity not yet being created. Despite this, many would argue that without the mental health capacity law being in place, those within the Behavioural Unit should have been able to deduct what their duty was in terms of how to approach this case. Immanuel Kant, an 18th century philosopher, presented a theory in which he believes that every rational agent is able to deduce what their duty is using their reason. This duty that Kant refers to are actions that must be carried out by humans which are derived from a sense that it is one's duty to do such an action and not for any other motivations. So now this leads us to question the morality and consciences of those who decided it was adequate to allow the following events that HL experienced. Further statements by his parents outlined that “he had no sense of danger.” This leads us to ask the question, was it right for the authorities to take HL away? Also, if it is medically evident that if one is unable to give consent by any means, then would any action taken be forceful and an assumption of their communication?
Kant's theory
Immanuel Kants’ deontological theory of ethics bases morality upon reason; he rejects hypothetical imperatives (which are claims about what you should do if you want to achieve a certain desire), as they're ‘not genuine morality’. Instead, morality should not be dependent on our personal desires, but rather on duty. Kant believes that good will is an action that acts out of duty (rather than in accordance) and that only actions done out of good will have moral worth. Therefore Kant presents a theory that indicates whether a maxim can be willed involving a system of categorical imperatives which should be done in all situations regardless of our desires, such as not lying to people. Kant presents two formulations of the categorical imperatives - the universalizability formulation, and the humanity formulation.
The first step of the first formulation is the contradiction in conception in which the maxim can only be willed if it is logically possible for everyone to act on it; the second step is the contradiction in will where a maxim contradicts our rational will to achieve ends. Kant’s second formulation is the humanity formula which states that treating someone as a means to your own end, means to use them which Kant argues against. This means that in order for a maxim to be our duty it must pass the second formulation as well as the first.
Kant’s ethical principles would insinuate that the abuse endured by HL was immoral. Kant believes that everyone is inherently worthy of respect and dignity including individuals such as HL therefore he should not have received the unlawful treatment that he experienced. By conducting these unlawful series of treatments Kant would argue that the medical professionals had performed immoral actions as they did not treat HL as a means and treated merely as means - HL was someone whose well-being was ignored and was treated in whatever way that would best achieve their aims .Limited knowledge of autism in healthcare professionals as a key barrier to receiving appropriate psychological or therapeutic support (Jones et al., 2014). Is it for this reason that Medical professionals are unable to treat autistic patients with the same respect as a non autistic patient? Or as a society have we failed the autistic community and normalised the mistreatment of those who are autistic? Meta-analysis found a rate of victimisation of 44% in autistic individuals. So perhaps it is not just the attitudes of the medical professionals towards HL that are to blame alone, but the ideas that are already rooted within UK society. The treatment of HL completely infringes the respect of HL and treats him merely as a means which would result in the treatment of HL being perceived as immoral - this is immoral under Kant's humanity formulation. Although autistic patients have alternative processing capacities than allistic patients, this does not make them any less worthy of the treatment that their allistic counterparts would receive.The involvement of the mental capacity, is a significant feature of the ethical aspect of this case, “is designed to protect and empower people who may lack the mental capacity to make their own decisions about their care and treatment”, (NHS) [21]. For people who have limited mental capacity, there are two options that could apply to the person:
Does a person have an impairment of the mind or brain?
Does this impairment affect decision making skills?
Furthermore, the Mental Capacity Act (MCA) says a person is unable to make a decision if they cannot understand, retain or are capable of processing the information. As part of the process of decision-making, HL met the majority of these criteria, so he should have been classified as someone who does not have the mental capacity to make decisions, which further supports that HL was detained against his own will. Society upholds the value of protecting the most vulnerable members, but the stark reality is that the most vulnerable are the ones being treated the worst, and with the least amount of care. A survey from the National Comorbidity demonstrates that 61% of the patients in psychiatric settings have experienced at least one traumatic event. Psychiatric patients appear to have greater exposure to traumatic events in comparison to the general population. This not only magnifies the extent of injustices of the medical system in the UK, but also illuminates the callous approach to care for the vulnerable. The Government takes pride in supposedly valuing its constituents, especially those that are more vulnerable, when in reality the data does not support this claim.
Conclusion
To reiterate above points, autistic people often have different behavioural characteristics to neurotypical people. Regardless of these differences, they are human just like everyone else, which means that they are also entitled to the same amount of respect that any other human being would be regarded with. Kant, a key philosopher explored in the ethics section presented a deontological theory of ethics in which it explains that the series of events that was endured by HL was immoral. HL was incapable of consenting treatment for himself due to his significant learning disabilities, restricting his ability to make such decisions. His pain was only shared by the family, who were left helpless; Mrs E spoke tenderly and distraughtly about the treatment of HL. She and her husband waited in trepidation for his release. In the period of four months in the Behaviour intensive unit, all his progress of living with the family had been put to a standstill.
In June 2005, the Government reviewed the Bournewood Case, creating the Deprivation of Liberty Safeguarding Act [23]. This protects individuals over the age of 18 who suffer from a mental disability, and have limited capacity to give consent to arrangements. Alternatively, an independent assessment would take place to protect the individual from harm. Medical law has allowed other people in similar situations to HL to not suffer in silence, but rather be protected and safeguarded by the law.
References:
[2] According to the https://libguides.bodleian.ox.ac.uk/law-medical Bodleian libraries Bodleian libraries , Oxford University’s main teaching and research science library
[3https://resolution.nhs.uk/2022/07/20/nhs-resolution-continues-to-drive-down-litigation-annual-report-and-accounts-published-for-2021-22/
[4] https://www.myhsn.co.uk/top-tip/history-of-the-nhs-a-summary Histroy of NHS
[7]https://news.sky.com/story/nhs-england-waiting-list-hits-record-high-as-7-6m-wait-for-routine-treatment-12960965#:~:text=An%20estimated%207.68%20million%20people,eighth%20consecutive%20month%20of%20increases. Sky news september 2023, record waitlist
[8]https://news.sky.com/story/why-are-consultants-and-junior-doctors-striking-and-why-could-it-be-the-worst-nhs-strike-yet-12854292#:~:text=Explainer-,Junior%20doctors%20join%20consultants%20for%20first%20joint%20strike%20in%20England,for%20doctors%20taking%20industrial%20action. Sky News September 2023. Junior doctors and consultants teaming up
[9]https://www.bma.org.uk/media/5504/bma-junior-doctors-contracts-pay-tables-apr-2022-2023.pdf BMA-jounior doctors tables of pay BMA
[10] https://www.patientclaimline.com/medicalnegligence/nhs-negligence-claims/ NHS Negligance claims
[11]https://www.equalityhumanrights.com/en/what-are-human-rights/human-rights-stories/bournewood-case ( the bournewood case)
[12] https://www.youtube.com/watch?v=pz5Ecovjs4w&t=1s the Bournewood case video
[14] https://www.nhs.uk/conditions/autism/ THe NHS
[16]https://www.savemyexams.com/a-level/biology/ocr/17/revision-notes/5-communication-homeostasis--energy/5-5-plant--animal-responses/5-5-9-the-human-brain/ Biology on the brain
[17] https://www.psycom.net/autism-brain-differences Psycom
[27]Article 5 {1} “Everyone has the right to liberty and security of person. No one shall be deprived of his liberty save in the following cases and in accordance with a procedure prescribed by law”
[28]Article 5 (4) “Release may be conditioned by guarantees to appear for trial. 4 Everyone who is deprived of his liberty by arrest or detention shall be entitled to take proceedings”
[30] Book: Your Life In My Hands, a junior doctor story by Dr Rachel Clarke
*Note: most junior doctors earn more than this value after the first year, junior doctor is the term to refer to anyone who is not a consultant. This can range from a FY1 (first year doctor), to the registrars and senior house officers. The wage for a FY1 is average £14.09 per hour, this drastically changes as doctors go up the ranking with experience and year practising.
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