Personal Experience and Reflections
I have devoted my life to helping people improve their mental, emotional, and social health. Taking a holistic approach to problem-solving, I have found that caring for patients and their families at the end of life brings a range of emotions and profound experiences. As a nurse, guiding patients through spiritual, psychological, and social care is immensely important. It allows me to support patients through their unique and often challenging journeys, from terminal diagnosis to end of life, through assessment, psychoeducation, and brief talk-based approaches.
My personal experience with my father’s pancreatic cancer deeply affected me. Post-surgery, he was allowed home, unaware of his diagnosis & prognosis until 6-8 weeks before his death. He wished to die peacefully at home, and as a family, we provided exceptional support to preserve his dignity. However, the limited palliative care in that region meant he suffered without adequate support in his final stages. This experience highlighted the critical need for robust palliative care and community support.
My partner was diagnosed with glioblastoma primarily on his spine. We were blessed with an amazing team of specialists, GPs, district nurses, social services, NHS, and hospice care. Initially, the plan was for him to move into a nursing home due to his young age and need for specialised care. Fortunately, we defied the odds and arranged for him to return home from the hospice. He was cared for 24/7 by myself, with the help of an agency-paid carer and Marie Curie during the day. I wouldn't say it was easy, seeing him deteriorate with a bedsore during his stay in care to manage his pain. Nevertheless, I took ownership and offered the best care I could ever give. During that phase I attended university to learn more about wound management and presented my thesis. I successfully healed his 5 cm depth to 13 cm length wound (e.g. debridement). His pain was also successfully managed with close monitoring, so he was painless at times. It was an all win-win situation in both of us and for the other professionals involved.
As a nurse and a partner, I pushed for the best care to minimise his pain and suffering. The district nurses were “God-sent.” He enjoyed a good quality of life as a paraplegic until three weeks before his death, when he became less communicative and slept a lot. It was a peaceful death, if you could call it that. This experience highlights the necessity of a robust and sustainable pathway for end of life care to alleviate pain, suffering, and the fear we have about death.
Discussing death is not easy, as it remains a taboo subject. People often struggle to have open and honest conversations about their wishes before they deteriorate. Coping with a terminal illness is challenging, and I have played a crucial role in ensuring that my patients and their carers record their wishes. These frameworks are essential for care planning, addressing probable diagnosis and prognosis, present and future needs, and ensuring patient-centred care that optimises quality of life until death. Reflecting on this journey, I recognised the importance of palliative care, specialist care, and community support. Despite compelling evidence, I felt helpless about the lack of palliative care in some communities abroad. My passion for end of life studies grew, aiming to engage internationally and advocate for sustainable healthcare policies that prioritise palliative care. This has allowed me to expand my knowledge, explore dying, death, and bereavement, and incorporate research, policies, and laws to raise global awareness.
Seeing pain around me, euthanasia and assisted dying never crossed our minds. Perhaps this is because we believe in life, and view death as a part of it. Nevertheless, assisted dying and euthanasia are contentious topics that intersect with ethics, law, and societal values. These practices involve intentionally ending a person’s life to relieve suffering, raising profound questions about autonomy, dignity, and the role of medical professionals. A lack of adequate support may prompt the inevitable, and fear of the unknown, including physical and psychological pain, affects both patients and their families.
Importance of Palliative and End of Life Care
The significance of palliative and end of life care cannot be overstated. Before considering euthanasia or assisted dying, it is essential to prioritise palliative care. Palliative care focuses on providing relief from the symptoms and stress of a serious illness, aiming to improve the quality of life for both the patient and their family. It involves a multidisciplinary approach, addressing physical, emotional, social, and spiritual needs (holistic approach).
Effectively administered palliative care can alleviate suffering and provide a sense of dignity and solace to patients, which may decrease the inclination towards euthanasia. It ensures that patients receive comprehensive support, including pain control, psychological therapy, and social services, enabling them to live as fully as possible until death. This comprehensive approach helps patients, and their families deal with the complexities of terminal illness, facilitating informed and empathetic choices.
It is vital to urge individuals to consider palliative care before making any drastic decisions regarding euthanasia. This ensures a complete evaluation of all options available for pain management and quality of life enhancement. By prioritising palliative care, people can make informed decisions based on a thorough understanding of their condition and the support they have, ensuring that euthanasia is only considered as an absolute last resort.
Ethical Considerations
The ethical debate centres on the concepts of autonomy and the sanctity of life. Advocates maintain that individuals should have the right to choose a dignified end to life, free from excruciating pain, highlighting the importance of personal autonomy and the compassionate relief of suffering. Conversely, critics argue that life holds intrinsic value, and that allowing euthanasia erodes this fundamental belief. They also express concerns about the possibility of misuse and the gradual progression toward involuntary euthanasia.
Legal Frameworks
Legal approaches to euthanasia and assistive dying vary globally. In countries like Belgium, the Netherlands, and Canada, these practices are legal under strict conditions. These laws typically require the patient to be suffering unbearably with no prospect of improvement, and to have made a voluntary, well-considered request. Safeguards include mandatory second opinions, waiting periods, and thorough documentation. In contrast, many jurisdictions prohibit euthanasia and assistive dying, citing ethical concerns and the potential for misuse. The legal landscape is continually evolving, with ongoing debates and court cases challenging existing laws.
Social Implications, Cultural and Religious Influences
Euthanasia and assisted dying remain deeply divisive issues, reflecting broader societal values and ethical principles. As legal frameworks continue to evolve, it is crucial to maintain rigorous safeguards to protect vulnerable individuals and ensure that these practices are carried out with the utmost care and respect for human dignity. Prioritizing palliative care is essential to provide comprehensive support and alleviate suffering, ensuring that euthanasia is considered only as a last resort.
The legalisation of euthanasia and assisted dying has significant social implications. It can alter the patient-doctor relationship, shifting the focus from solely preserving life to considering the quality of life and the patient’s wishes. This shift requires medical professionals to navigate complex emotional and ethical terrain, balancing their duty to alleviate suffering with their commitment to do no harm. Moreover, societal attitudes towards death and dying can be influenced by these practices. Legalisation may lead to greater acceptance of euthanasia as a legitimate option for end-of-life care, potentially reducing the stigma associated with it. However, it also necessitates robust public education to ensure that individuals understand the legal criteria and ethical considerations involved.
In many countries across Asia and South America, cultural and religious beliefs play a significant role in shaping attitudes towards Medical Assistance in Dying (MAID). These regions often emphasise the sanctity of life, which can influence their legal and ethical stances on end of life practices.
Asia - Many Asian countries have strong cultural and religious traditions that value the sanctity of life. For example, in countries with significant Buddhist, Hindu, or Islamic populations, the belief in the sacredness of life and the moral implications of ending it prematurely are deeply ingrained.
South America - Similarly, in South America, predominantly Catholic countries often adhere to the teachings of the Catholic Church, which opposes euthanasia and assisted dying on the grounds that life is sacred and only God has the authority to end it.
These cultural and religious perspectives contribute to the legal frameworks in these regions, often resulting in stricter regulations or outright prohibitions on MAID.
Conclusion
When considering euthanasia, it is crucial to prioritise mental health assessments. Individuals experiencing severe mental health issues, such as self-harming behaviours, may inadvertently seek euthanasia as a means to end their suffering. Vigilance is necessary to ensure that these individuals receive appropriate mental health support and interventions, rather than prematurely opting for euthanasia. This approach helps safeguard against the misuse of euthanasia by those who might otherwise benefit from comprehensive mental health care and support. Emphasising palliative care and end of life services is essential for ensuring a dignified and compassionate approach to dying. By focusing on comprehensive palliative care, we can address the physical, emotional, and psychological needs of individuals, providing them with comfort and support during their final stages of life. This approach not only alleviates suffering but also respects the dignity and wishes of the patient and their family, ensuring they receive the best possible care without prematurely considering euthanasia.
"Useful articles"
Five references that cover palliative care, end-of-life care, euthanasia, assisted dying, and compassionate care:
1. Assisted Dying: Principles, Possibilities, and Practicalities - This article provides an in-depth review of assisted dying from an English physician’s perspective, comparing models from Switzerland, Oregon (USA), and Victoria (Australia).
Assisted Dying: Principles, Possibilities, and Practicalities - Authored by Dr. Richard Huxtable, published in the Journal of Medical Ethics, 2023.
2. Care of Dying Adults in the Last Days of Life - This guideline by NICE covers the clinical care of adults in their last days of life, focusing on improving end-of-life care by maintaining comfort and dignity.
Care of Dying Adults in the Last Days of Life - Published by the National Institute for Health and Care Excellence (NICE), 2021.
3. Palliative and End of Life Care Policy and Guidance - An overview of key policies and guidance for palliative and end-of-life care in the UK, provided by Hospice UK.
Palliative and End of Life Care Policy and Guidance - Provided by Hospice UK, 2022.
4. End-of-Life Care and Physician-Assisted Dying - A comprehensive report by the British Medical Association discussing support for patients at the end of life and the ethical considerations of physician-assisted dying.
End-of-Life Care and Physician-Assisted Dying - A report by the British Medical Association, 2022.
5. Economic Value of End-of-Life and Palliative Care - This study assesses the economic value of palliative and end-of-life care interventions across various settings, highlighting their importance in healthcare resource allocation.
Economic Value of End-of-Life and Palliative Care - Authored by Dr. Katherine Sleeman and colleagues, published in The Lancet, 2023.
10:56 AM · Oct 7, 2024
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