Medical Expertise vs Autonomy: The Ethics Behind a Patient’s Decision-Making Capacity

In August 2023, Sudiksha Thirumalesh (also referred to as ST), a British 19-year-old, was declared to lack the mental capacity to make medical decisions for herself because she disagreed with the fatal diagnosis she received from doctors, and believed she still had a chance to recover. The Court stated that due to her “inability” to believe what the doctors were telling her as the truth, she lacked decision-making capacity. ​​Ms. Thirumalesh's case raises questions about whether patients should be deemed to lack medical decision-making capacity when they are reluctant to accept their doctors' opinions about their condition/prognosis. There is a central question that stands out: Is agreement with a doctor’s prognosis relevant in determining a patient’s decision-making capacity?

Table of Contents

• Abstract

• Introduction

• Background Information

  • Legal Background on Mental Capacity: UK

  • Background on ST

  • The Court Case

  • Judgment & /Result of Court Case

  • Legal Background on Mental Capacity: US

• Ethical Analysis

  • US vs UK

  • Looking to the Future: Utilitarianism and Consequentialism

  • Patient Autonomy and Mental Capacity

  • Resources & Futile Treatment: Justice 

  • Deontology & Treatments

• Conclusion

Introduction

In August 2023, Ms. Thirumalesh was declared by the UK courts to lack the mental capacity to make medical decisions for herself because she disagreed with the prognosis she received from doctors. Ms. Thirumalesh suffered from a rare mitochondrial disease and wanted to travel to Canada to receive nucleoside therapy, an experimental treatment. The National Health Service (NHS) doctors felt that even if it was feasible for Ms. Thirumalesh to travel to Canada for treatment, it would be medically inappropriate to provide it to her.  The doctors opined that she was "actively dying" believing she was “actively dying” and that further treatment was “futile.” In August Ms. Thirumalesh was brought to court by the NHS and Mrs. Justice Roberts ruled in favor of the NHS trust, stopping Ms. Thirumalesh’s active treatment and placing her in palliative care despite her and her family’s wishes, claiming that “[she was] unable to make a decision for herself in relation to her future medical treatment…because she [did] not believe the information she has been given by her doctors” (Roberts J). Ms. Thirumalesh passed away on the 12th of September, 2023 from cardiac arrest and respiratory failure. Ms. Thirumalesh was also faced with a Transparency Order, or gag order, in April of 2023. I will not be focusing on this primary ruling of Ms. Thirumalesh’s case or addressing many related events. In addition, from this point on, I will refer to Sudiksha Thirumalesh as ST, which is what the court documents referred to her as.

In this paper, I will evaluate the ethical concerns surrounding Ms. Thirumalesh’s case. I will look at the situation from both a patient’s perspective, in this case, Ms. Thirumalesh's, and a doctor’s perspective. I focus on the values of trust, autonomy, and beneficence under the frameworks of utilitarianism and consequentialism. Additionally, I will compare Ms. Thirumalesh’s case to ethical discussions surrounding patient autonomy in the US and analyze how the private and universal healthcare systems might allow or prevent such situations. Overall, I will explore how medical decision-making capacity is assessed and determined. Specifically, I will consider whether accepting a physician's medical opinion or medical recommendation is, or should be, necessary to be deemed capable of making one's own medical decisions.  I will evaluate these questions in the context of both the US and UK healthcare systems.

This paper will discuss how patients may maintain autonomy, specifically when they disagree with medical professionals, focusing on the case of Ms. Thirumalesh or ST. I will be analyzing the precedent this case sets and the ethical questions it raises. I will focus on the value of autonomy and include a discussion on trust, utilitarianism, and deontology. Additionally, I will analyze this case within the context of the medical system in which it takes place and explore its relation or effect on the case.

Background Information

Legal Background on Mental Capacity: UK

To set the scene, I will first explain the legal background in which ST’s case takes place before further explaining the actual situation and court ruling. 

In the UK, the age of medical consent is 16 or over and can only be overruled in “exceptional circumstances” (NHS) meaning that when the case occurred, ST was considered an adult. According to the NHS, some people who lack mental capacity may have one of the following conditions: dementia, a severe learning disability, a brain injury, a mental health condition, a stroke, or unconsciousness caused by an anesthetic or a sudden accident.

“1. The Principles of the Mental Capacity Act

1. The following principles apply to the purposes of this Act [MCA].

2. A person must be assumed to have capacity unless it is established that he lacks capacity.

3. A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.

4. A person is not to be treated as unable to make a decision merely because he makes an unwise decision.

5. An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.

6. Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action.” (MCA)

According to the Mental Capacity Act (MCA) in the UK, patients should not be determined to lack mental capacity simply because they make an unwise decision. This is extremely relevant in ST’s case because her doctors disagreed with her decision to travel to receive treatment due to it being unwise and dangerous for her. Psychiatrists had determined her mentally able to make decisions, but doctors continued to disagree with her because of her decision. 

“2. People who lack capacity

1. For the purposes of this Act, 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.

2. It does not matter whether the impairment or disturbance is permanent or temporary.

3. A lack of capacity cannot be established merely by reference to—

   1. a person's age or appearance, or

   2. a condition of his, or an aspect of his behavior, which might lead others to make unjustified assumptions about his capacity.

4. In proceedings under this Act or any other enactment, any question of whether a person lacks capacity within the meaning of this Act must be decided on the balance of probabilities.

5. No power which a person (“D”) may exercise under this Act—

   1. in relation to a person who lacks the capacity, or

   2. where D reasonably thinks that a person lacks capacity, is exercisable in relation to a person under 16.” (MCA)

In the second clause, the MCA states that a person who lacks capacity is unable to decide for themselves because of “an impairment of, or disturbance in the functioning of, the mind or brain.” This means that lacking capacity must directly correlate to an issue in the functioning of the mind or brain. In ST’s case, doctors had determined that MDS had not affected her brain and both psychiatrists said that she had full mental capacity, meaning there was no issue in the functioning of her mind. Despite this, Mrs. Justice Roberts cited this section of the MCA as evidence for ST’s lack of capacity. If this was the case, that ST had no issue in the function of her mind or brain, the court did not have sufficient grounds to rule that she lacked capacity.

Notably, lack of capacity may not be established simply by referencing “a condition of his or an aspect of his behavior, which might lead others to make unjustified assumptions about his capacity.” This excerpt is important because it could be argued that ST’s belief in her ability to live or the fact ST had a terminal illness may have influenced the doctor’s and court’s opinion of her mental capacity.

“3. Inability to make decisions

1. For the purposes of section 2, a person is unable to make a decision for himself if he is unable—

   1. to understand the information relevant to the decision,

   2. to retain that information,

   3. to use or weigh that information as part of the process of making the decision, or

   4. to communicate his decision (whether by talking, using sign language, or any other means).

2. A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means).

3. The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision.

4. The information relevant to a decision includes information about the reasonably foreseeable consequences of—

   1. deciding one way or another, or

   2. failing to make the decision.” (MCA)

In essence, patients are determined to lack decision-making capacity if they are unable to understand, retain, use, or weigh up information as part of the process of making the decision or communicating their decision. As I will go on to explain in further detail, this was not an issue for ST. Decision-making capacity is also determined through a 2-stage test:

1. Can they make a decision?

2. Is the inability to make a decision caused by an impairment of, or disturbance in the functioning of, a person’s mind or brain?

Background on ST

Unfortunately, there is not a lot of reliable information about ST’s life before her hospital stay, her experiences during the case, or her disease, but I have included important facts about her condition and the events leading up to the court case. ST was a 19-year-old student who was studying for her A-levels. She and her family were reportedly very close and with her every step of her hospital stay. Before her admittance, she lived in Birmingham, UK with her parents and older brother. Originally born in India, she and her family moved to the UK in 2003 where ST spent most of her life. She and her family were devoutly Catholic, beliefs they maintained throughout her stay at the hospital. ST and her family were extremely close and tight-knit; for example, when she entered the Intensive Care Unit, ST’s parents sold their family business to dedicate all of their time to caring for ST. ST’s mother was at her side 24/7 ensuring her comfort. 

ST suffered from a rare mitochondrial depletion syndrome (MDS), which affected her hearing, sight, muscle strength, and other organs. According to the Children’s Hospital of Philadelphia, MDS refers to a group of mitochondrial disorders characterized by a lack of mitochondria, which are responsible for producing energy for the cell and affect the proper function of the cell. MDS is genetic, but it is recessive, meaning there is often no family history of this disease and a diagnosis can catch a family by surprise. This disease is a progressively degenerative disease, with an uncertain prognosis and no known cure (Children’s Hospital of Philadelphia). 

ST had been a regular teenager, studying for her exams, until August 2022, when she contracted COVID-19 and suffered respiratory arrest before being admitted to intensive care. She stayed there until the court decision in August 2023. When she initially contracted COVID-19, her doctor encouraged her to move to a palliative care plan. ST refused and recovered, though she remained in intensive care. Unfortunately, I could not find further details about the palliative care plan, or the circumstances under which she was admitted to the hospital. But, after contracting Covid-19, ST remained in intensive care. During this time, her condition took a turn for the worse due to the progression of her mitochondrial disorder, and was put on a ventilator and dialysis.

In response to her worsening condition, ST’s doctors wanted her to be removed to a palliative care plan. In this plan, she would be removed from dialysis and doctors would make “no further attempts to resuscitate her in the event of further major respiratory arrest” (NHS Trust vs ST, 2023). According to the doctors who treated her, ST’s disease was “incurable and progressive,” which is the medical consensus of MDS within the medical and scientific community. The doctors also claimed she was “actively dying” (NHS), which according to the Anne Robson Trust, means that a person is in the final stage of the dying process. A patient in this stage typically lives up to 3 more days and they begin to show symptoms of near-death, such as dangerously low heart rate and unresponsiveness. Other symptoms include changing skin color, irregular breathing, urinary and bowel inconsistency, hallucinations or delirium, and a build-up of fluid in the lungs (Anne Robson Trust). Notably, the doctors and her lawyer cited ST as communicative. She also went on to live for about 2 to 3 more weeks after this case. The pre-active stage of dying seems to align more with what ST experienced; it typically lasts about 2 to 3 weeks and typical symptoms include restlessness and agitation. But, it is important to note that I am not a doctor and cannot diagnose a patient. Additionally, it is unclear if the doctors were referring to this specific medical stage or if they were broadly claiming that ST was dying. 

Despite the doctor’s poor prognosis, ST wanted to travel to Canada for an experimental nucleoside treatment. ST had previously been a part of medical trials in the South of England for her disease before contracting COVID-19, (DailyMail) and wanted to continue doing so. ST discovered Dr. Kenneth Myers, a Canadian neurologist currently a McGill University researcher. At the time, he was working on an experimental treatment for MDS using deoxynucleoside pyrimidines. In an interview, he recounts the journey of a 17-year-old girl who initially was unable to walk but after 6 months of treatment was able to walk around and “was getting better…in a meaningful way with real…[improvments] to quality of life” (Myers, DailyMail). 

Unfortunately, according to the NHS University Hospitals Birmingham at “no point [had] any hospital [in Canada] agreed to accept her”. Additionally, ST could not afford the expensive trip to Canada as she had planned. On her behalf, Ms. Thirumalesh’s parents issued a report to have reporting restrictions* lifted to fundraise for this trip and treatment (NHS). Overall, there were 3 main issues surrounding her desire to travel to Canada to receive experimental treatment: 

1. Doctors were unsure of her condition to travel. According to doctors from her hospital, it was “unclear” to them whether or not she was fit to make the journey to North America.

2. At the time, no hospital in Canada had admitted her.

3. She lacked the funds to travel to Canada and was unable to fundraise due to the Transparency Order or gag order placed on her by the UK courts.

   
   

*There is some brief background information on the gag order from the NHS:

“The Court of Protection anonymized Sudiksha, her parents, and the clinicians, following the established law in cases of serious medical treatment, and made a Transparency Order or a gag order. Sudiksha’s parents applied on 4 April 2023 to discharge the Transparency Order, but on 15 May 2023 agreed to adjourn it, and also agreed that unless her prognosis improved, CPR and other escalations of treatment would be inappropriate.”

According to this same source, the Courts anonymized the case in order to protect the doctors, nurses, and hospital. It prevented any reporting on the case, which in turn impacted ST’s ability to publicly fundraise.

Another important fact is that the courts claimed that ST believed that the sudden and recent deterioration of health was a consequence of her prior COVID-19 infection. Unfortunately, I could not find evidence of ST saying this herself, only the courts repeating what doctors had claimed ST believed. Conversely, the doctors said that ST’s health deterioration was the natural progression of her mitochondrial disease. In response, ST stated that she had defied the doctor’s prognosis once before when she contracted COVID and maintained hope that she may do it again. In my opinion, the decline of her health was mostly likely due to both her COVID-19 infection and her disease; her contraction of COVID-19 probably left her in a weaker condition and more susceptible to her MDS declining.

In addition to her condition at the hospital, ST and her family suffered substantial emotional trauma at the hospital. According to a Daily Compass interview with her brother Varshan Thirumalesh, ST and her family had horrible experiences at the hospital. In the interview, Varshan Thirumalesh describes how ST and their family felt stressed and intimidated at the hospital. He claims that the doctors refused to let ST leave the hospital despite being in stable condition. The family believes that ST was handed a “death sentence” and that doctors “tried to break her psychologically and to destroy her will to live by telling her repeatedly she was going to die.” These shocking quotes do need to be considered in context; Varshan Thirumalesh was ST’s brother who fully believed in ST’s ability to recover and was part of a very close-knit family. In addition, this is the only information that I have found related to ST’s own opinion on the proceeding of the court case. Despite this, there is an undeniable truth in his words; ST and her family felt as though the hospital was working against her and not working in ST’s best interests at all. 

The Court Case

Now that I have made clear ST’s situation, I will explore further the actual court case, and then the decision. When looking at ST’s case, it is important to note that she was able to communicate her decision effectively. Where the issue lay is that the doctors argued that she didn’t understand the extent to which her disease progressed and that her MDS was affecting her, not the aftereffects of COVID-19. The doctors and court claimed that ST couldn’t accept the fact that she was in the last stage of her life, which impacted her ability to “understand information relevant to [her] decision”. As a result, the NHS hospital brought ST to court. 

On the 25th of August, 2023, ST was found unable to make her own medical decisions. I will discuss the details of the case and a few important aspects that stand out to me. According to the approved judgment from the NHS Trust vs ST 2023 case, Mrs. Justice Roberts stated that though Ms. Thirumalesh “recognizes that she may not benefit from further treatment”  and that she does not believe her doctors or the poor prognosis she received from them (NHS Trust vs ST, 2023). 

As part of the court proceedings, ST was evaluated by 2 psychologists and was determined to have the capacity to make healthcare-related decisions for herself. She could communicate “reasonably well” with doctors but sometimes required assistance from her mother or speech therapists. When her lawyer, Mr. Foster, originally met with her in the hospital, he described her as “alert and conscious” and capable of giving him instructions. But, “ST told Dr. A [one of the psychologists who evaluated her] that her belief in her ability to survive her disease was “unshakeable”. He has characterized this as a “deeply seated misunderstanding of her illness and her care needs” (NHS vs ST, section 100). Essentially, although both psychiatrists confirmed that ST didn’t have any mental hindrances that interfered with her ability to make decisions, Dr. A reported that ST did not understand the reality of her disease and prognosis.

According to the NHS hospital that treated her, ST “simply did not believe that her condition was that fragile.” They admitted that there was indeed a discrepancy between what ST’s treating physicians and the psychiatrists who assessed her believed about whether ST’s disagreement was due to “an impairment or disturbance in the functioning of the mind or brain” or not (UHB NHS, 2023). This suggests that the clinicians believed that ST was unable to decide for herself because she had a mental impairment despite psychiatrists saying that she did not. Controversially,  “Mrs. Justice Roberts preferred the clinicians’ view” (UHB NHS, 2023).

This statement is extremely shocking because not only does it minimize the impacts of this case on ST, in her mind a matter of life or death, but it frames the case as an opinion. In general, a court decision should not be a matter of preference but of careful consideration of a case's facts and details. This sentiment from the hospital raises questions about the thoroughness and carefulness of the decision made about ST’s case.

Judgement and Result of Court Case

Many of the details of this case are unclear from my research, but I have been able to gain access to and analyze the Court’s written decision. I have selected a few notable quotes from Mrs. Justice Roberts to analyze:

“In my judgment, and based upon the evidence which is now before the court, I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.  Her vulnerability has been acknowledged by Dr C. I need no persuading that she has been adversely impacted by the trauma of her initial hospital admission…exacerbated by the length of her stay in the ITU unit…she has endured almost a year of intensive medical and surgical intervention which has been both painful and distressing for her.  She is frightened by the prospect of dying and clings to her desire to survive what her doctors have repeatedly told her is an unsurvivable condition.” (NHS vs ST, section 103) 

As seen above, the Court cited ST’s inability to “accept the medical reality” of her condition and her refusal to believe that the doctor’s information was accurate, as a result of “an impairment of, or disturbance in the functioning of, her mind or brain.” The Justice attributed this to the trauma and stress of spending a year in intensive medical care, watching the people around her die, and fearing the prospect of dying; she agreed that “ST [did] not suffer from any recognized psychiatric or psychological illness” (NHS v. ST, 2023). Mrs. Justice Roberts claims both Ms. Thirumalesh’s "brain impairment or disturbance" and the trauma from her time in intensive care as reasons for her lack of medical decision-making capacity. The Justice also claimed that Ms. Thirumalesh lacked the mental capacity to litigate without the assistance of a litigation friend. This means that another person, a family member, friend, or solicitor, would need to assist ST should she wish to make another claim. 

“The cumulative effect of her circumstances over such a prolonged period, her profound inability to contemplate the reality of her prognosis, and a fundamentally illogical or irrational refusal to contemplate an alternative are all likely to have contributed to impaired functioning notwithstanding the resilience which ST has displayed in her determination to carry on fighting.  It is not necessary for me to seek to further define the nature of that impairment.  I am satisfied that it exists and that it operates so as to render her unable to make a decision for herself in relation to her future medical treatment.” (NHS vs ST, section 103)

In addition, the Justice states that ST’s circumstances–being in the ICU for so long and the mental baggage that comes along with it– as well as her inability to accept her prognosis and recommended treatment plans illustrate ST’s impaired mind function and evidence of her lack of decision-making capacity. The Justice goes on to claim that “the nature of [her] impairment” is unnecessary to explain, but it is clear that ST is unable to make further medical decisions related to her treatment. This is a shocking sentiment, the idea that the Judge does not need to explain their reasoning which is contrary to medical professionals, in this case, the psychologists. Apart from making claims about ST’s mental state (trauma from the ICU) which the consulting psychologists disagree with, there is not a lot of other evidence that supports the Judge’s claim, making it objectionable. 

“…all the evidence points to ST’s survival to date being the result in large measure of the increasingly intrusive, if not extreme, interventions which her clinicians have used to keep her alive.  I have no doubt that ST’s personal resilience in the face of the odds presented to her and her strong wish to survive have contributed to the success of the efforts that her doctors and nurses have made to preserve her life. However, it is clear to me that ST has closed her mind to the prospect that the medical prognosis she has been given may be sound.  It may be that this is what she has needed to do to sustain her unshakeable belief in the likelihood she will recover.” (NHS vs ST, section 102)

Ultimately, the judge decided that ST was being kept alive only by the “intrusive, if not extreme, intervention” by the clinicians. In other words, ST was staying alive solely due to extreme and intrusive treatment, but this is not sufficient evidence to remove her to palliative care. There are thousands of people on life support just in the UK, and using life support as a reason for her lack of mental capacity is not a valid argument. 

In addition, from the judge’s perspective, ST “closed her mind”, or refused to accept her medical prognosis to maintain her belief that she would recover. This is a valid claim, as ST did have a strong belief in her ability to recover from her disease, as stated by the psychologists. Since the doctor’s prognosis was contrary to this belief, her refusal to believe them could have been to support her own beliefs. 

In summary, Mrs. Justice Roberts deemed that for a patient to have mental decision-making capacity, they must believe the information she receives as true, citing the 2005 Mental Capacity Act. From Mrs. Justice Roberts’s ruling, for a patient to have medical decision-making capacity they must believe a doctor’s prognosis. In addition, a psychiatrist’s evaluation is insufficient to guarantee a patient’s decision-making capacity; the decision is ultimately a legal one, not a medical one. In other words, a patient’s mental capacity is determined legally based on a court's judgment, rather than a medical professional’s opinion. As a result, ST was prevented access from active treatment and moved to a palliative care plan on which she passed away a few weeks later. 

Legal Background on Mental Capacity: US

I will now explore mental capacity laws in the US to properly analyze and compare both universal and private healthcare systems. In the US, medical capacity is determined differently. There is not a specific law that covers this topic, unlike the UK, but what is most commonly used as a test for medical decision-making capacity is attributed to Dr. Paul Appelbaum. Dr Appelbaum’s test requires a patient to meet 4 main criteria:

1. Communicating a choice 

2. Understanding the relevant information

3. Appreciating the situation and its consequences

4. Reasoning about treatment options

The first criterion refers to consistency in a patient’s choice. If the patient is constantly changing their opinion or inconsistent in their decision, they may not have mental capacity. The second criterion essentially means that the patient can understand their condition, their treatment options, and the risks and benefits of each of those treatment options. The third criterion is that a patient must be able to understand the long-term impacts of each decision on their life. It’s further than simply understanding the risks and benefits, it’s being able to understand the consequences of any given treatment option. The final criteria states that a patient must be able to explain their choice and the pattern of thought that led them to their conclusion/decision.

Ethical Analysis

UK vs US

When looking at ST’s case, the role of the healthcare system may have played a larger role than when initially looking at it. The UK has a universal healthcare system, the National Health Service or NHS, which functions alongside a growing private health sector. Naturally, lower-income patients rely significantly more on the NHS system than wealthier patients. If doctors were allowed to cut off patients from care, it would inevitably disproportionately impact low-income families who cannot afford to seek other means of healthcare. Additionally, it would give doctors a lot of power over who should receive or deserves treatment. In ST’s case, she was denied care from an NHS hospital. As a result, she was denied care from all NHS hospitals. This put ST in a situation where, because she was refused treatment and could not afford any other treatment, she was essentially abandoned and forced to accept palliative care. 

On the other hand, in the US private healthcare is most common, though there are systems such as Medicare and Medicaid which function similarly to the single-payer system in the UK. Doctors are often paid on a fee-for-service basis, typically based on the number of patients they treat and tests run. While the UK system might be more prone to dying patients' care due to financial concerns, the US system doesn’t face these constraints. On the other hand, doctors might even feel less inclined to remove a patient from care, especially if the patient wants to continue care and is willing to pay for it. I will go on to explain this in further detail, and elaborate on some reasons doctors may refuse to treat. 

It is also important to note the differences in laws surrounding mental capacity in the UK and in the US. In the UK, the laws are a lot clearer. From my research, the US does not have a lot of laws surrounding mental capacity, making judgments on this topic a lot more controversial and subjective. 

Overall, universal and private healthcare systems, as demonstrated by the US and UK, lend themselves to differing problems. In the UK, lower-income patients are often at a disadvantage should they be stopped from accessing treatment and may be more dictated by resource scarcity. In the US, doctors may feel less inclined to remove a paying patient from care. 

Looking to the Future: Utilitarianism and Consequentialism

From my research, there have not been many other cases similar to this one, which is unique in the sense that the doctors refused to treat an adult patient, in what they considered the patient’s best interest. There have been a few cases involving young children whose parents wished to continue treatment, contrary to the doctor’s recommendations. However, very few have involved an adult who is deemed mentally capable by two psychologists but who was nonetheless legally denied access to treatment. There have been a few other, cases in which a doctor refuses to treat a patient based on either prejudice or fear of catching an illness. For example, in Bangladesh during the COVID-19 pandemic, clinicians refused to treat patients with the disease for fear of catching it and being unable to support their families. Unfortunately, neither of these is particularly applicable to this situation as ST did not have a virus, though some argue that she was a victim of racism. 

This is an interesting claim and there is evidence from ST and her family to support this. As I mentioned earlier in the paper, ST and her family felt as though they were not respected by the physicians, but mocked and ridiculed. These accusations were accredited to racism and many media sources, including the DailyMail and various other Christian news websites. While these are valid arguments, white Europeans such as Charlie Gard and Alfie Evans also experienced similar cases, questioning the root of the lack of respect experienced by ST. In my opinion, it is hard to tell whether or not ST experienced racism without hearing the perspective of the NHS doctors themselves. 

When thinking about the future impacts of ST’s case, two extremes come to mind. One extreme is perpetuating the paternalistic role of doctors within our society. By giving doctors the power to block patients from treatment, it reinforces the stereotypical role of doctors as “all-knowing” within the doctor-patient relationship. Some might say that doctors have a responsibility to act per accepted standards of medical practice and that because of their training and expertise, they are better positioned than laypeople to determine whether a treatment is or is not appropriate for a particular patient. 

On the other hand, it also raises the question of whether patients should be able to get any medication or treatment they want.  But are we undermining a doctor’s knowledge and perpetuating mistrust of doctors if we allow patients to make their own healthcare decisions contrary to medical advice? This brings up new issues of “Dr. Google,” self-diagnosis, and off-label prescriptions. In reality, all healthcare systems must utilize a balance between a doctor’s medical expertise and a patient's autonomy. It is a doctor's responsibility to communicate a patient's situation and possible treatment options, but ultimately it is up to the patient to decide their treatment.

In reality, there needs to be a balance and agreement between a patient’s autonomy and a doctor’s professional opinion, a balance of trust and understanding between the two. If patients aren’t able to respect a doctor’s professional knowledge and doctors are unable to trust a patient's autonomy, communication breaks down and conflicts such as ST’s occur. 

Patient Autonomy and Mental Capacity

In the case of ST, one of the most recognizable ethical dilemmas is the issues surrounding autonomy. On one hand, the doctors determined that continued treatment would be futile. On the other, ST believed that experimental treatment would be worthwhile, and “she wishe[d] the court to acknowledge her right to make that decision for herself.” Now, with the context of ST’s situation, we can consider the main ethical question: Is it ethical to refuse to allow an adult patient to make her own medical decisions because she disagrees with a doctor or does not accept a doctor's medical opinion?

Does believing in miracles deem a person unable to make medical decisions, and if so to what extent? According to her family, ST had a strong belief in God and in her ability to recover. While it is unclear whether her religious beliefs drove this confidence in her ability to recover, it certainly impacted the clinician's view of ST, at least according to her interview with the Daily Compass. But past her religious beliefs, ST did believe in the miracle that she could recover from her precarious health state. Had ST explicitly stated that she understood that she was actively dying, but still maintains her faith in her ability to recover, then I believe there may have been less questioning of her mental capacity. Ultimately, the real issue lay in the doctor's forced removal of treatment that ST could not accept that she didn’t need, but I will expand on this later on in my discussion about scarce resources. 

Additionally, her tight-knit family accepted any decisions ST made on the matter. ST’s parents also truly believed in her ability to recover, but while her brother didn’t believe in her ability to recover, he wished for her to continue treatment as that was what ST wanted. What role did they serve in her decision-making process? Family and the people we surround ourselves with all have huge influences on our decisions and our lives. Had ST’s family agreed with the doctors and dissuaded ST from pursuing active treatment, I believe there is a high likelihood that ST would have also agreed to the doctor’s recommendations and accepted palliative treatment with less of a fight. 

How does our respect for a patient's autonomy differ at the end of life? Should ST’s goals and priorities for the end of her life, to “die trying to live”, have been acknowledged or valued more than they were? In our society, we usually accept that people who are at the end of their lives can do things that would typically be considered unusual or unacceptable. A question we like to ask ourselves is what would you do if you only had 6 months left to live? Answers almost always include some combination of traveling, quitting jobs, and spending time with loved ones. With this in mind, should ST not have been given the same respect, even though her wishes did not align with social norms, as stated in the MCA? Instead of wanting to travel the world, ST only wanted to try any and all treatments available that might allow her to survive. In my opinion, ST’s desire to live should have been given equal stock as the desires of others who are at the end of their lives. This I will also expand on during my discussion on resources. 

Overall, it is essential to question whether going against a patient’s wishes is a failure of respect or a lack of respect for patient autonomy. If a doctor is blatantly ignoring the patient’s desires, I believe that is a lack of respect on the doctor’s behalf. But, if the doctor is acting in a way that they believe is best for a patient, the situation may change. When looking at this issue, it is important to consider the intentions of the doctor. From ST’s perspective of her stay at the hospital, the overarching belief of her doctors was that ST’s desire to live was laughable and they ridiculed her for her religious beliefs. This shows how the doctors might not have been taking ST’s desires seriously and not recommending her treatment with the best intentions. 

Resources & Futile Treatment: Justice 

The principle of Justice is one of the core values when thinking about Bioethics. In Bioethics, justice calls for the responsible allocation of resources. Taking into account the nature of the NHS and the British healthcare system, resource allocation could have been a motivating factor behind the doctor’s reasoning on ST’s case. 

When a patient in ST's situation insists on continuing active treatment, should we regard her as unnecessarily consuming (scarce) resources? If her treatment was futile, could the resources going to her have gone to another patient who could have recovered? From a utilitarian perspective, her futile treatment meant that the resources going to her care were being used wastefully. But, from the perspective of ST’s family, the care was life-sustaining and saving their beloved sister and daughter. In this situation, the benefits of treatment go further than simply physiological benefits. 

In other words, is it a doctor’s job to provide care that is best for the patient’s physical health or mental health? In ST’s case, she felt as though the doctors were working against her and did not have her best interests in mind because of their forced removal of treatment. If ST only had so long left to live, would it have been more ethical for the doctors to continue her treatment even if it functioned solely as a placebo? On one hand, it would have saved ST from a lot of the trauma and heartache she and her family suffered at the end of her life. On the other hand, this invites previously discussed issues related to resources and the expenditure of unnecessary resources within a Universal healthcare system. Standardizing the use of scarce resources as a placebo would result in a lot of wasted treatment that could’ve gone to other people. 

But would that expenditure of resources be worthwhile if it benefited the patient only mentally? Ultimately, there is a juxtaposition between prioritizing a patient’s emotional or physiological health. But, when considering this, it is important to note that both the clinicians working with ST and the Justice believed that removing ST from her treatment would benefit her mentally, despite her every protest. So who can decide what benefits a patient emotionally, a doctor or a patient? To me, this has a clear answer. While outsiders (ie doctors, family, friends, Courts) may be able to consider the long-term impacts on a patient’s health, ultimately it is the patient, with mental capacity, who must determine what is best for them emotionally in that moment.

Should doctors continue treatment if a patient is prepared to pay for it? According to a study by Dr. McQuoid-Mason, doctors have no legal duty to provide treatment that they deem futile or for patients whose “prognosis is hopeless” (McQuoid-Mason). His paper states that doctors and medical professionals are not obligated to provide medically futile treatment, but providing such treatment may be justified if it functions as a harmless placebo. He goes on to explain that if treatment is refused, patients must be allowed to look for another doctor who might be willing to provide treatment (McQuoid-Mason). This differs drastically from the NHS and British system where it would be nearly impossible for a patient to look for other treatment options because of the structure of the system. As I will explain in more depth later on, ST was blocked from accessing any form of NHS treatment in the UK, which contradicts the opinions of Dr. McQuoid Mason. 

It is also important to note that the treatment ST sought to pursue in Canada was not paid for by NHS. Had she pursued the experimental treatment, ST would have paid for the trip and any other costs herself and the NHS would, assumedly, stop paying for any treatment they were providing her. This adds an interesting dimension to the case and essentially invalidates the claim that the doctors’ motivation for removing ST from active treatment was conscientiousness of scarce resources.

Overall, scarcity of resources is a complex issue when considering the ST case. Medical treatments and resources provide benefits further than simply physiological ones; they can also function as a placebo. The mental and emotional benefits of continued treatment must also be carefully considered, especially when taking a patient off treatment is an option. With this in mind, utilizing active treatment as a placebo may have negative health impacts and be considered a waste of scarce resources. In ST’s case, I believe that continuing her active treatment would have been a better choice, bearing in mind the emotional toll of removing her from treatment.

Deontology & Treatments

When looking at ST’s case, it also is important to consider the role of the patient's doctors and what responsibilities that entails. According to the Hippocratic Oath, it is a doctor's role to care for a patient and act in their best interest, in other words, beneficence. But, could there be a situation in which going against a patient’s wishes works in the patient’s best interest? Assuming that “best interest” refers to the physiological benefits outweighing physiological harm, the doctors believed stopping ST’s requested treatment would be in her best interest. On the other hand, is breaching a patient’s autonomy ever in their best interest if it is harming a patient, considering a doctor's duty to ‘do no harm’? Taking into account a patient’s mental, emotional, religious, and spiritual needs, denying treatment to ST was probably not the best course of action. At what point does breaching a patient's autonomy go into the territory of harming a patient, and on the flip side when is continuing treatment considered harming a patient, especially once they’ve reached the last stages of their life? This is a core question in this case. 

Is it ethical for a doctor to override a patient’s request for medical treatment? In other words, can a doctor withhold treatment? In the UK, the legal answer to this question has proven to be yes time and time again through cases such as Charlie Gard and Alfie Evans, and again through ST’s case. But it is important to consider these rulings themselves, just because they are ‘legal’ and align with the law does not mean that they are ethical. These rulings risk perpetuating medical paternalism in society by giving more decisive power to the doctors. According to an opinion piece from STAT News, doctors do have the right to deny treatment but only in specific situations, such as when they face abuse from patients or are working outside of their realm of knowledge. These circumstances are not applicable in ST’s or similar cases though; the doctors stopped treatment because they believed she was dying. 

In the context of ST’s case, she was not only refused treatment but also not allowed to travel to receive other experimental treatment outside of her hospital and even the NHS. In this situation, ST was not only denied treatment but prevented from traveling elsewhere for treatment. In my opinion, blocking access to all treatment is unethical because if a patient truly believes they need help, they should be provided it. In the US, if a person is denied care or doesn’t receive the diagnosis they’re looking for, they can often go to another doctor until they find one that is willing to treat them. For obvious reasons, this is not ideal and can result in overdiagnosis and overtreatment. But at the end of the day, the patients (who can afford it) can be offered treatment. On the other hand, in the universal healthcare system of the UK, the hospitals are all connected through the NHS. Since one hospital refused to treat ST, the rest of the NHS hospitals would have to have followed suit. This means that ST was not able to get the care she desperately wanted anywhere in the UK. 

So, according to the UK courts, it is legally permissible to withhold treatment from a patient. But is it ethical? Through a utilitarian lens, the case can be viewed as ethical because the doctors ensured the most benefit to the patient without using up scarce resources. Comparatively, if we look at ST’s case through a consequentialist lens, then it may be viewed as the not morally or ethically correct mode of action because, in the end, not only patient die but suffered emotionally at the end of her life. 

The dilemmas surrounding physiological vs emotional benefits of care extend into treatment options as well. When looking at these dilemmas, one must take into account the duty of the doctor and their obligation to do no harm. 

Conclusion

In my opinion, disagreeing with a doctor, maintaining hope for a recovery, or praying for a miracle should not cause a patient to be considered mentally incapable of decision-making. If a patient can understand the information presented to them and apply that information, they should be deemed to have medical decision-making capacity. In addition, choosing to make a decision contrary to professional medical advice is not the same as not believing a doctor but rather making a different decision. While these are all requirements stated in the UK law, at the end of the day the determination of mental capacity is subjective. And as a result, personal biases will always influence the determination. In ST’s case, I believe that she did have the capacity, at least according to the UK laws, but was told otherwise because she disagreed with her doctors. Had ST agreed with the doctors, I think that it would have been extremely unlikely for to mental capacity to have been questioned. 

Although doctors didn’t view this as the best course of action for her, she should have been permitted to live the last few days or weeks of her life as she chose. Unfortunately, in terms of scarce resources, this is not and cannot be feasible for every person who is dying. However, it is important to note that the accusations of negligence made by ST and the disparities in the court’s definition of mental capacity reveal that ST may have been prevented from accessing possible life-saving or at the very least life-prolonging treatments. 

Ultimately, it is hard to say what the “correct”  or most ethical answer to this dilemma is. In my opinion, had ST and her family been a little more lenient in their beliefs and the doctors been a bit more respectful and receptive to ST’s beliefs, this situation could have been resolved a lot more smoothly. While the full details of what occurred are not available to us, from my knowledge of this case, I believe that the best compromise would have been to continue active treatment but not allow ST to travel to Canada. While the care she was receiving would not have gone so far as to be palliative as the doctor wished, I think that this would have given ST and her family more time to consider their options in a less emotional situation and learn to accept that ST was at the end of her life. 

Looking to the future, how will issues similar to Ms. Thirumalesh's pop up more and more as technology progresses to allow humans to continue “living” and breathing for longer and longer? At what point will we have to draw a boundary? Right now, issues surrounding patients' mental capacity, especially when they have a terminal illness, are very present. Healthcare professionals and policymakers across the country and world struggle with these issues. But is there a truly black-and-white solution for them?

Works Cited

"Actively Dying: What Does It Mean?" Anne Robson Trust,

annerobsontrust.org.uk/actively-dying-what-does-itmean/#:~:text=Active%20

dying%20is%20the%20final,and%20symptoms%20of%20near%2Ddeath. Accessed 28 May 2024.

Bari BA, Beach SR. Evaluating Capacity: Appelbaum's Framework Interpreted

Diagrammatically. J Acad Consult Liaison Psychiatry. 2024 Jan-Feb;65(1):120-121. doi:10.1016/j.jaclp.2023.09.007. Epub 2023 Oct 5. PMID: 37804918; PMCID:PMC10922513.

Dains, Interdeep. "EXCLUSIVE: The Parents of Sudiksha Thirumalesh - Only Known as 'ST'

until Today - Reveal Their Anger and Grief after Their Daughter's Death Which Saw Them Dragged through the Courts after Trying to Raise Money for Her Medical Treatment Overseas." Daily Mail, 22 Sept. 2023, www.dailymail.co.uk/news/article-12551033/Parents-Sudiksha-Thirumalesh-ST-anger-grief-daughters-death-courts-raise-money-medical-treatment-overseas.html. Accessed 17 Apr. 2024.

"Dr. Myers and Research Team Members." McGill,

www.mcgill.ca/child-neurodevelopmental-disorders/dr-myers-and-research-team-members. Accessed 17 Apr. 2024.

Hull, Sarah C. "Not so Conscientious Objection: When Can Doctors Refuse to Treats." STAT 

News, 8 Nov. 2019, www.statnews.com/2019/11/08/conscientious-objection-doctors-refuse-treatment/. Accessed 17 Apr. 2024.​

Mental Capacity Act 2005, c. 9. Available at:

https://www.legislation.gov.uk/ukpga/2005/9/contents/enacted Accessed: 29 May 2024 

"Mitochondrial Depletion Syndrome." Children's Hospital of Philadelphia,

www.chop.edu/conditions-diseases/mitochondrial-depletion-syndrome. Accessed 28 May 2024.

Myers, Kenneth. Deoxynucleosides Pyrimidines as Treatment for Mitochondrial Depletion

Syndrome (dC-dT-MDS). 13 Mar. 2024. ClinicalTrials.gov,clinicaltrials.gov/study/

NCT04802707?tab=history&a=7. Accessed 28 May 2024.

---. "Deoxynucleosides Pyrimidines as Treatment for Mitochondrial Depletion Syndrome (dC-

dT-MDS)." National Library of Medicine, 13 Mar. 2024, clinicaltrials.gov/study/NCT04802707?tab=history&a=7. Accessed 17 Apr. 2024.

"Sudiksha Thirumalesh." University Hospitals Birmingham NHS Foundation Trust, 29 Sept.

2023, www.uhb.nhs.uk/news-and events/news/sudikshathirumalesh/630972#:~:text=

Sudiksha%20Thirumalesh%2C%20who%20was%2019,2022%20to%2012%20September%202023. Accessed 17 Apr. 2024.

Thirumalesh, Varshan. "This Is How British Doctors Caused My Sister Sudiksha's Death."

Interview by Patricia Gooding-Williams. Daily Compass, 12 Oct. 2023, newdailycompass.com/en/this-is-how-british-doctors-caused-my-sister-sudikshas-death. Accessed 28 May 2024.

United Kingdom, Court of Protection. A NHS TRUST ("The Trust") v. ST (by her litigation

friend, the Official Solicitor). British and Irish Legal Information Institute,

www.bailii.org/ew/cases/EWCOP/2023/40.html. Accessed 17 Apr. 2024.