XGBSHN5013 Ethical Dilemma in Healthcare: Noel Conway Case Study

Introduction

This portfolio aims to reflect on an ethical dilemma case study and outline the best practice recommendations to solve the chosen dilemma in healthcare setup using existing legislation, policies and developmental practices. Therefore, for this proposed portfolio, a case study of Noel Conway has been taken into consideration. Noel Conway who had been diagnosed with motor neuron disorder chose to remove ventilators with the support of family and hospice and died at home at the age of 71 years. Noel Conway, a retired lecturer campaigned against the ban on assisted dying after being diagnosed with motor neuron disorder (Sherwood, 2021). Upon analysing the case scenario, it was seen that Conway made a statement that he was conscious and made a deliberate effort to end his life. Conway launched a legal challenge for the ‘right to die’ in 2018 where he challenged the 1961 Suicide Act which condemned him to accept terrified death. Assisted suicide was prohibited under this act, and voluntary euthanasia was considered as murder as per the UK law (BBC, 2021). Noel took his request to the UK Supreme Court and pleaded for dignified death and he lost the appeal. Conway sought judicial approval for the option of assisted dying arguing that his deterioration of health and continuous progress of severity related to motor neuron disease (MND) stripped him of his dignity and autonomy. These legal and ethical challenges revolved around balancing the individual’s freedom, and protection of vulnerable individuals. This case study refers to the tension between the principle of autonomy, and non-maleficence. Conway argued for his right to self-determination, emphasizing the importance of choosing when and how to end his life to avoid prolonged suffering. However, this assisted death and the urge for euthanasia can have a negative impact on society, such as the risk of coercion, devaluation of life for disabled individuals and the erosion of trust in medical professionals. The Suicide Act, of 1961 of the UK also criminalises assisted death of Euthanasia by prioritizing the protection of the life of aby individuals. However, the case scenario of Conway questioned whether this blanket prohibition infringes the human rights of a person with specific needs under the European Convention on Human Rights or ECHR, (Article 8). This case scenario raises the concern in practice in the following ways:

1. Patient autonomy: whether it is rightful to provide the patient the right to determine their fate when facing terminal illness or not.
2. Safeguarding vulnerable groups: how can a law ensure that individuals are not pressured into assisted dying?
3. Role of Healthcare Providers: Can healthcare practitioners reconcile their duty to save lives with assisted death?

In this portfolio, a brief introduction of the ethical dilemma and how this ethical issue can affect the health and social care of a particular group suffering from terminal illness has to be discussed thoroughly. Apart from that, the key components of current policy and legal framework, and key ethical and practical challenges for practitioners related to the chosen ethical dilemma have to be included in this portfolio.

Main Body

Part 1: Introduction of Ethical Dilemma

Noel Conway’s case study highlights a profound ethical dilemma including mental capacity, managing risk, and safeguarding vulnerable suffering from terminal illnesses. Noel Conway, 67 years 67-year-old lecturer from Shrewsbury has been diagnosed with motor neuron disorder. After continuous deterioration of his health and an increased rate of the severity of his disorder, Noel decided to remove his ventilator with the support of his family and local hospice to get a dignified death (Sherwood, 2021). According to the Suicide Act, of 1961 of the UK, this approach is considered as murder and the doctor might face heavy penalties along with 14 years of imprisonment (Lipscombe et al., 2014). He argued that while he had less than six months to live and had the mental capacity to make his own decision, he wished to perform assisted death or euthanasia to ensure his ‘peaceful and dignified’ death. Considering the parliamentary debate, it was seen that Mr Conway who was not at London’s High Court wanted a declaration that the Suicide Act, 1961 which states that assisted dying is incompatible in relevance to Article 8 of the European Convention on Human Rights. According to Articles 8, and 14 of the European Convention on Human Rights, everyone should provide respect and dignity to the private and family life of any individual despite any discrimination (Council of Europe, 2014). However, in the High Court, Lord Justice Sales, Mrs Justice Whipple and Mr Justice Gerham rejected this case as a criminal offence and violence against human rights. The Noel Conway case represents a significant ethical dilemma centred around the issue of assisted dying or euthanasia. This case raises questions against autonomy versus Protection of Life, where Conway’s case highlights the tension between respecting an individual’s autonomy, and their right to choose how and when to die when that individual is suffering from a terminal illness. Supporters of this case argued that an individual with a terminal illness must access the right to end his life before complete deterioration of health, whereas the opponents fear that legalised assisted dying might put pressure on vulnerable individuals to end their lives prematurely. This case also raises questions regarding quality of life versus sanctity of life. Conway argued that his quality of life had been deteriorating and he had less than six months to live and whereas he still can make decisions he must get a chance to end this unbearable life. This contrasts with the belief in the sanctity of life, which holds that life should be preserved regardless of its condition and quality (BBC, 2021). Additionally, the case of Noel Conway can have a negative impact on healthcare providers. Upon analysing this case scenario, it can be stated that allowing euthanasia or assisted dying can impact negatively the code of profession and duty of care of the healthcare workers, as they might face moral and ethical conflicts between their duty to save lives and respect the wish to die of the vulnerable patient. Such cases can create emotional and professional challenges for the professionals who are associated with end-of-life care.

Part 2: How this ethical issue currently affects the health and social care of a particular group and its implications

The ethical issue related to assisted dying as exemplified by Noel Conway’s case poses significant challenges to the health and social care scenario. In particular, the debate intersects with border concerns about the rights, care quality, and safeguarding of individuals with terminal illnesses and disabilities.

The current impact on health and social care includes terminally ill patients like Noel Conway, who is suffering from motor neuron disorder and can frequently encounter restrictions in exercising autonomy over his end-of-life decision due to the legal prohibition of assisted dying in the UK. According to the framework of palliative care set up by the NHS, every healthcare professional should aim to provide relief to the patient from suffering and improve the quality of life, but it often falls short of providing the control over life and death decisions that some patients seek (National Guideline Centre (UK), 2019). For individuals like Conway, this gap contributes to emotional distress and a sense of entrapment in a deteriorating body.

Disability rights and social stigma:

The debate surrounding assisted dying can directly impact people with disabilities, who often feel stigmatized by social assumptions about their quality of life. Organisations like Not Dead Yet UK, an advocacy group for disabled individuals argue that legalizing assisted dying may reinforce discrimination by implying that the lives of people with disabilities are less valuable (World Health Organization, 2020). In contrast, proponents of assisted dying including many terminally ill individuals, contend that denying access to such options infringes on their human rights under Article 8 of the European Convention on Human Rights or ECHR.

Impact on caregivers:

Primary caregivers such as Conway’s wife in his case might face substantial emotional and physical burdens. In the case of individuals with specific needs or specifically those who are suffering from terminal illnesses, often struggle to provide adequate support to the patient in the absence of accessible end-of-life options and facilities which leads to burnout among the caregivers, and puts a strain on the relationship between patient and caregiver. According to the case scenario of Noel Conway, this situation has had a profound impact on his wife Carol Conway (Skopeliti, 2021). In Noel’s case, his wife expressed that Noel’s decision to end his life was made with the support of his family and local hospice team along with medical professionals. Ashe expressed the level of anxiety and uncertainty they faced during the combat between Noel Conway and the court of the UK.

Health Care Services and Patient Autonomy

Looking at the international framework, unlike the UK, many countries like the Netherlands, and Belgium have legalized assisted dying and established. Reports from the Dutch Regional Euthanasia Review Committees indicate Dutch Regional Euthanasia Review Committees indicate that the majority of patients who opt for assisted dying do so to preserve dignity and autonomy rather than as a response to inadequate healthcare. Under Medical Assistance in Dying (MAID), Canada provides a legal pathway for terminally ill patients to access assisted dying (Government of Canada, 2021). A 2020 review by the Canadian Medical Association Journal showed that patients experienced reduced distress and greater satisfaction with end-of-life care when assisted dying was an option.

Implications of Unresolved:

For patients, without addressing this ethical dilemma, individuals with terminal illnesses will continue to face unnecessary suffering and reduced autonomy (Akdeniz et al., 2021). This can lead to increased instances of patients seeking illegal or unregulated means to end their lives, posing significant risks to their dignity and safety.

Healthcare professionals face moral distress when unable to reconcile their duty to care for their patients with the legal prohibition on assisted dying (Fontalis et al., 2018). This can lead to burnout and reluctance to work in palliative care settings. Social care providers may also struggle to address the complex emotional needs of caregivers and patients under the current framework. The absence of a clear legal framework exacerbates societal divides and fuels public dissatisfaction with the healthcare and legal systems. Failure to address the issue perpetuates inequality, as only those with the financial resources to travel abroad can access assisted dying legally.

Part 3: Annotated timeline

The timeline is considered an important framework to examine key legal, policy, and ethical milestones shaping the debates on assisted dying in the UK.

1961- Suicide Act:

The key development: decriminalized suicide in England and Wales but criminalized abetting suicide under Section 2(1), which is considered a punishable offence (Legislation.gov.uk, 2010). As per this act and article, if any healthcare worker or individuals are seen to promote euthanasia or assisted dying for any individual, he or she will be penalized with up to 14 years of imprisonment (Helal Mehtab et al., 2022).

Impact of ethical dilemma: established a legal barrier to assisted dying and framed it as a criminal offence irrespective of the circumstances and condition of the patient who is suffering from terminal illness. This eliminates the autonomy, and basic human rights to make their own decisions for terminally ill patients.

1998- Human Rights Act- the Human Rights Act 1998 incorporates the rights from the European Convention on Human Rights into UK law, allowing individuals to seek justice in the UK courts without going to Strasburg (Dawson, 2024). In the case of Noel Conway, who suffered from a terminal illness like motor neuron disease, he challenged the legality of the blanket ban on assisted dying under the Suicide Act, of 1961. Conway argued that this prohibition infringed upon the human rights related to autonomy, and the right to make their own decision patient as per Article 8, of the HRA (Hobson & Papadopoulou, 2021).

2017- Noel Conway files judicial review

Conway diagnosed with motor neuron disease sought permission for assisted dying, arguing that the blanket ban under the Suicide Act, violated his Article 8 rights. The High Court rejected his appeal against the blanket ban on assisted dying in 2018, the case highlighted significant public interest and concern regarding the issue (BBC, 2021). As a result, discussions in Parliament have intensified with calls for a comprehensive review of assisted dying laws. Conway’s advocacy work has inspired ongoing campaigns by organisations like Dignity in Dying, which continue to push for legislative changes that would allow terminally ill individuals to choose assisted death under strict conditions. The recognition of assisted dying as an ‘issue of transcendent public importance’ has led to increased political engagement and a potential pathway for future policy development regarding the ethical concern (Sherwood, 2021). The outcome of this case was that the UK Supreme Court rejected his appeal, citing the need to protect vulnerable individuals.

2019- Renewed Calls for Parliamentary Debate

Significance: Following Conway's case organisations such as Dignity in Dying intensified their campaigns, using his experience to argue for revisiting the Suicide Act in light of modern ethical considerations (UK Parliament, 2023).

In 2021, the Assisted Dying Bill was published which represented an evidence-based proposal for law change that seeks to provide compassionate choice to people suffering from terminal illness (Lewis, 2021). This bill also protects every individual in England and Wales. As per this bill, assisted dying requires confirmation from two independent doctors and High Court judges, and individuals over 18 years old and terminally ill with six months or less to live and fully mentally competent can appeal for assisted dying. Such individual can be able to receive a prescription for life-ending medication to use at a time and place of their choosing. This bill was passed on a Second Reading in October 2021 but ran out of time to complete all necessary stages before the parliamentary session ended. A new bill, the Terminally III Adults (End of Life) Bill is currently being considered and will have its Second Reading on November 29, 2024 (Roberts, 2024).

Part 4: Key components of the current policy and legal framework

The current policy for assisted dying in the UK is the Terminally III Adults (End of Life) Bill, which comes into force in November 2024. The key components of this current policy are:

1. Eligibility criteria:
2. Individuals must be over 18 years old and registered with a general Physician in England or Wales for assisted dying for at least 12 months (Roberts, 2024).
3. They must be suffering from terminal illnesses diagnosed by healthcare organisations and expected to live six or less than six months.
4. Decision-making Capacity:
5. The patient must demonstrate a mental capacity to make an informed decision, free from pressure, and coercion.
6. Application process:
7. Individuals must make two separate declarations, witness and sign the wish to die.
8. Approval must be taken from two independent doctors and assessments should be given at least seven days apart (The Hindu, 2024).
9. Judicial Oversight:
10. A high court judge must review each of the cases, and allow for a period of review with mandatory 14-day waiting time after thoroughly reviewing the appeal of the individual.
11. Legal Safeguards: the legislation must implement strict review and penalties for coercion, with offenders facing up to 14 years of imprisonment.

This framework aims to balance patient autonomy or freedom, dignity, and rights to make their own decisions with necessary safeguarding the people from abuse and discrimination.

Part 5: Key ethical and practical challenges for practitioners

Noel Conway's case study highlights the ethical and practical challenges faced by the practitioners working with the current legal framework and policies related to assisted dying in the UK. The current legal and policy framework surrounding assisted dying in the UK presents both ethical and practical challenges for practitioners. One major ethical dilemma is balancing patient autonomy with the sanctity of life (Byrnes et al., 2022). Practitioners must navigate a complex moral landscape where they may feel a contradiction between their code of practice and professionalism and the patient’s wish to end their suffering or euthanasia along with adherence to the law that prohibits assisted dying. The main ethical dilemmas related to current policy related to assisted dying include Autonomy versus protection. More specifically, it can be stated that practitioners must maintain a proper balance between the code of practice, legal policy adherence and patient preference, as Noel Conway sought to respect the wishes of terminally ill patients and sanctioned their appeal for assisted dying against the Suicide Act, 1961. It can cause emotional conflict in health and social care worker might experience moral distress, and be torn between their professional duties to respect the wish of suffering and adhere to the legal policies related to assisted dying (Akdeniz et al., 2021).

The practical challenge includes ambiguity in guidelines. The 2010 DPP guidelines provide discretion for prosecution in assisted dying cases but lack of clarity created uncertainty for practitioners and families. Additionally lack of implementation of a palliative care framework specifically for terminally ill patients or alternative of assisted dying can necessitate substantial recourse allocation which over over-limited in the overstretched health and social care setting of the UK.

Part 6: Conclude with a discussion on recommendations for best practices

To address these challenges, the following recommendations can be suggested:

1. Enhanced training: practitioners should receive comprehensive training on ethical considerations and legal frameworks concerning assisted dying to ensure informed decision-making.
2. Policy reform: The UK government needs to develop and implement a clear legal framework and policy for legalizing assisted dying for those who are suffering from terminal illness and might live 6 or less than 6 months with mental competency. Policy should also prioritise the Human rights of the vulnerable individuals by ensuring their safeguard from abuse, and any social discrimination (Willmott et al., 2021).
3. Ongoing ethical review: it is important for both the government and healthcare organisations across the UK to implement a continuous reviewing process for the policy and legal frameworks associated with assisted dying and safeguard people suffering from terminal illness (Schildmann et al., 2021). In this review process, the practitioners. Service users and advocacy groups should be encouraged to engage to create a balanced approach that can respect autonomy and uphold ethical and legal integrity.

These implementations can promote a more inclusive, compassionate, and practical framework for addressing ethical dilemmas like Noel Conway's case scenario.

Conclusion

This portfolio has taken the case scenario of Noel Conway into consideration, who was a retired lecturer and campaigned against the ban on assisted dying after being diagnosed with motor neuron disorder. After being informed about not more than six months of living, Noel Conway appealed for euthanasia by deciding to remove his ventilator with the support of his family and local hospice. This campaign was organised by the organisation like Dignity in Dying. This portfolio has explored the ethical and legal dilemmas related to assisted dying in the UK. In this portfolio, a highlight has been given on the complexities related to balancing patient autonomy, legal constraints, and the role of healthcare professionals towards the current policy framework like the Suicide Act 1961, European Human Rights Act, and DPP guidelines. However, as per this portfolio, currently, Terminally III Adults (End of Life) Bill has been passed by the UK government which came into force in November 2024 to safeguard vulnerable individuals specifically those who are suffering from terminal illness and review the appeal for assisted dying for those who might live less than 6 months. In this portfolio, the challenges faced by practitioners such as emotional burden, legal ambiguities, and limited palliative care resources have been discussed as well as the application of several recommendations to legalise euthanasia for those who are terminally ill and lost the ability to live independently.

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References

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