Medical Aid in Dying: Reconciling Justice and Autonomy

The concepts and debates of someone’s life ending unnaturally date back to ancient Greece and Rome. Evolved since then into passive euthanasia, active euthanasia, and finally Medical Aid in Dying (MAiD), an end-of-life option for those with terminal illnesses. Medical Aid in Dying is a difficult topic with various twists and turns and endless questions. For several patients choosing this end-of-life option makes them feel in more control of a life that they have limited control over in the last month of their life. A significant ethical question examined in this paper is whether MAiD increases patient autonomy or reflects a lack of justice for terminally ill individuals. This paper discusses the specific approach of New Jersey’s "Medical Aid in Dying for the Terminally Ill Act" and its implications for patient autonomy and justice. Key stakeholders, including terminally ill patients, healthcare professionals, and policymakers, are analyzed to understand their roles and perspectives. Additionally, this paper explores challenges faced by patients with neurodegenerative diseases who are excluded from MAiD due to their inability to self-administer medication, raising questions of fairness and justice and how the potential expansion of MAiD to individuals with mental illnesses presents ethical dilemmas about autonomy and the risk of coercion.

Table of Contents

• Abstract

• Introduction

• Background on MAiD

• Central Ethical Question

• Autonomy and Justice

• New Jersey’s approach to MAiD 

• Stakeholders

• Mental Illness Consideration

• Conclusion

Introduction

Author: Ri Ya

The concept and debates of someone's life ending unnaturally date back to ancient Greece and Rome. The first reference to it in medical literature comes from the Hippocratic oath (Pereria). Then it was named euthanasia. But, in the past decades, it has evolved into different forms while still having the same result, an individual's life ending. Specifically, euthanasia refers to the administration of a lethal injection or other form to a patient with a terminal diagnosis by a physician while in Medical Aid in Dying (MAiD), the patient must self-administer a combination of pills that together are lethal. A type of euthanasia that does take place still today is Active Euthanasia which is not legal in the United States but it is legal in Belgium, Canada, Colombia, Ecuador, Luxembourg, Netherlands, New Zealand, Spain, and Australia. In the US however passive euthanasia is allowed which refers to patients having the right to refuse medical treatment and instead opt for pain management (if they choose to) even if doing so speeds up their death. So fundamentally on a very surface level passive euthanasia and MAiD indeed do bring more autonomy to patients. 

This paper will investigate the extent to which MAiD provides patients with more autonomy and how terminally ill patients are threatened by the existence of MAiD. Additionally, since MAiD laws can vary based on state and country this paper will pay close attention to Medical Aid for Dying in New Jersey. 

Background on MAiD

MAiD is legal in 10 states in the United States and the District of Columbia, and it is also legal in certain other countries, including Canada, the Netherlands, and Switzerland. Since the legalization of MAID in Oregon in 1997 those 10 other states slowly followed to have a total of 5329 people who died by MAID and a total of 8451 who received the prescription as of 2022. This means 3122 people did not die by MAID because they either died before they could take the medication or chose not to but knew they had the option to if they wanted. (Compassion and Choices)  These pills that aren’t used are required to be disposed of legally. One requirement to be eligible for MAiD is that they must have “capacity of making health care decisions” and “be determined by patients attending and consulting physicians to be terminally ill” (Department of Health).  Expansion of New Jersey’s requirements is in the ethics portion of this paper. 

Author: Isha Talpade

Many desire this option to relieve themselves of pain and because of a life that is not worth living. Individuals with certain conditions may not be able to do what is most important to them in their lives and therefore do not want to suffer longer (Compassion and Choices). Things such as eating, and going to the bathroom by themselves may seem minor but are important to someone with little control over their body. In terms of control, MAID is a way for individuals to gain control over how and when they die, one of the few things they may be able to control. Lastly and perhaps most importantly the leading reasons why individuals care to use MAID is because they feel a sense of purposelessness, lack of mental capability, and being unable to have meaningful interactions with loved ones. To further understand the perspective of why someone may use MAiD, take a look at a real individual who selected MAiD at the end of their life. Brittany Maynard was born in Anaheim, California in 1984. At 29 years old and days after her 1st wedding anniversary she learned that she had brain cancer. Immediately she underwent a series of surgeries to stop the growth of her tumor. A month later she learned that her tumor had come back and was more aggressive this time being categorized as a glioblastoma, which is an extremely fast-growing tumor. She was given a prognosis of 6 months to live by her doctors. In the following months, she considered several possibilities of what to do. Doctors prescribed a full brain radiation because the tumor was so large but this would leave her scalp with first-degree burns and she said that her “quality of life as she knew it would be gone” (Brittany Maynard) No treatments could save her life and any recommended ones, she felt, would destroy the time she had left. (CNN) She considered passing away in hospice care which is an end of life care that tends to the symptoms, emotional and spiritual needs of patients by reducing pain and suffering. However, she declined hospice care because she could potentially develop morphine or pain medication-resistant pain and she would undergo personality changes and verbal, cognitive, and motor function loss. And so after her research, she decided she wanted Medical Aid in Dying. At the time in California MAiD laws had not been passed yet so her husband and she uprooted their lives to become Oregon residents to pursue MAiD. Once doctors determined she passed all the requirements a prescription for the lethal pills was filled. She emphasized how just having the medication gave her a sense of control because it allowed her to be at ease in the last months of her life. She passed away with Medical Aid in Dying November 1st 2014. For Brittany Maynard her decision was motivated by ending suffering for her and also her family, her quality of life, and control over her life. (CNN)

Central Ethical Question 

Does MAiD increase patient autonomy or is it a sign of the lack of justice for individuals with these terminal illnesses? Is it both? Can both qualities of MAiD simultaneously coexist?

New Jersey’s approach to MAiD 

Author: Darwinek

To understand some real implications of this question this section will present and then analyze New Jersey’s approach to MAiD. “The Medical Aid in Dying for the Terminally Ill Act” of New Jersey allows an attending physician to prescribe the lethal medication that would enable a qualified terminally ill patient to end his or her life. The Act defines “terminally ill” as “the terminal stage of an irreversibly fatal illness, disease, or condition with a prognosis, based upon reasonable medical certainty, of a life expectancy of six months or less.”  Specifically, the Act defines an “attending physician” as a “physician who has primary responsibility for the care of a patient and treatment of a patient’s terminal disease” (Department of Health NJ). A patient is deemed qualified once a consulting physician has examined the patient and their medical records, the patient is confirmed to be capable, is acting voluntarily, and is making an informed decision, and the physician has made a diagnosis of terminal disease in writing. So more broadly this means, as stated before, patients must be determined to have decision-making capacity which is assessed on a case-by-case basis. If either an attending physician or consulting physician determines that a patient may not be capable, the physician must refer the patient to a psychiatrist, psychologist, or clinical social worker who would determine if the patient is capable. The Act defines “capable” as “having the capacity to make health care decisions and to communicate them to a health care provider, including communication through persons familiar with the patient’s manner of communicating if those persons are available.” Medication cannot be prescribed until the psychiatrist, psychologist, or clinical social worker notifies the attending physician in writing that the patient is capable. Additionally, acting voluntarily means that the patient cannot be coerced. The patient must be making a fully independent decision to be eligible. A patient could obtain a prescription for medication to end his or her life only if he or she has made an informed decision, meaning understood all the options and their respective situation. A request for medication must be made twice orally and once in writing. The oral requests must be separated by at least 15 days. This 15-day time delay is intended to ensure that the patient has time to rethink their decision if they wish. At the time of the initial oral request, an attending physician would have to recommend that the patient take part in consultations on treatment opportunities. At the time of the second oral request, the attending physician must offer the patient the opportunity to rescind the request. At least 15 days would have to elapse between the initial oral request and the writing of a prescription and 48 hours would have to elapse between a patient signing the written request and the writing of the prescription. The written request would have to be signed and dated by the patient and witnessed by at least two people who attest that the patient is capable and acting voluntarily. One of these witnesses would have to be a person who is not related to the patient, entitled to any portion of the patient’s estate, an owner, operator, employer, or resident of a healthcare facility at which the patient is receiving medical treatment; or the patient’s attending physician (Department of Health NJ). Once all the requirements are met the physician can write the patient a prescription for the lethal pills. The attending physician is required to dispense medications directly to the patient or to contact a pharmacist and transmit the prescription to the pharmacist. The Act requires that a qualified terminally ill patient’s medical records contain documentation as to: 

• The determination that the patient is a qualified terminally ill patient; 

• The oral requests and written requests; 

• The attending physician’s and consulting physician’s diagnosis, prognosis, and determination that the patient is capable, is acting voluntarily, and has made an informed decision; 

• If applicable, written notification from a psychiatrist, psychologist, or clinical social worker that the patient is capable; 

• The attending physician’s indication that all the requirements of the Act had been met and the steps taken to meet the patient’s request, including the type of medication prescribed.” (NJ Consumer Affairs Medical Board Summary) 

Stakeholders of Medical Aid in Dying 

Author: sarcifilippo

One stakeholder is terminally ill patients. They are the primary beneficiaries and decision-makers in this scenario. For them, the ethical question revolves around autonomy and the right to control their own end-of-life choices. An example of someone who has used MAiD (although not from NJ, the situation is not unusual to one that would happen locally) is a man who was diagnosed with stage 4 lung cancer. Even when healthy, according to his daughter, he wanted to decide how he would die if he were faced with a life-threatening situation. With his whole family's support, he went forward with MAID and died peacefully in July 2023. (Dying with Dignity Personal Stories Archives) Additionally, attending physicians and consulting Physicians are also stakeholders. These healthcare professionals play a crucial role in assessing the patient's condition, determining eligibility, providing information, and prescribing the medication. Their ethical responsibilities include ensuring patient autonomy, upholding the principles of beneficence and non-maleficence, and adhering to legal and professional standards. They also face the extra burden of balancing their own values with that of what a patient asks because they may or may not align. They are responsible for not overstepping their authority to influence patients one way or the other. Also, pharmacists are responsible for dispensing the lethal medication as prescribed by the attending physician. Their ethical obligations involve ensuring proper procedures are followed, verifying prescriptions, and potentially engaging in conversations with patients about their decisions. Similarly to Physicians, Pharmacists too are individuals with their own values and or religious beliefs. Additionally, family members and caregivers may have various perspectives on MAiD, ranging from support for the patient's autonomy to concerns about the decision's impact on themselves and the family dynamics. Also with the addition of MAID for those with mental illnesses in Canada, mental healthcare professionals are stakeholders too. Psychiatrists, psychologists, and clinical social workers may be involved in assessing the patient's mental capacity and ensuring they are making informed decisions free from undue influence or coercion. Their ethical duty is to accurately assess the patient's mental state and advocate for their well-being. Last but not least Legal and Policy Makers: They are responsible for drafting and implementing laws like the Medical Aid in Dying for the Terminally Ill Act. Their ethical considerations include balancing individual autonomy with societal values, and ensuring access to end-of-life options while also safeguarding against abuse or misuse of the law.

Autonomy and Justice

Autonomy as a Core Value: The principle of autonomy is a fundamental bioethical consideration in healthcare. MAID is seen as an extension of the patient's right to make decisions about their own body and life, similar to other decisions about medical treatments and interventions, especially at the end of one’s life. Recognizing that each patient has unique values and beliefs, MAID allows individuals to make decisions that align with their personal and cultural values regarding death and dying. For example, patients can decide that their quality of life has deteriorated to a point where continuing to live is more burdensome than dying, thus exercising autonomy in deciding what constitutes a life worth living for them. Additionally, many patients view the ability to choose MAID as a way to maintain dignity in their final moments, avoiding scenarios they find intolerable, such as severe pain, loss of bodily functions, or prolonged dependency. For some patients, the ability to choose the timing and manner of their death may alleviate suffering and improve their quality of life during their remaining time.

Additionally, going hand in hand with how Medical Aid in Dying upholds patient autonomy because it is not available everywhere, and for anyone with a terminal illness it creates a fairness and justice issue. As said previously Medical Aid in Dying is not available to all states nor is it available to all terminally ill patients. There are strict guidelines. The lack of access to Medical Aid in Dying (MAiD) for terminally ill patients highlights a profound injustice in healthcare systems nationwide. This inequity is evident in the geographic disparities that determine whether a patient can legally choose to end their suffering on their own terms. In many jurisdictions, MAID is not an option, forcing patients to endure prolonged physical and psychological pain, despite advances in palliative care. Prior mentioned was Brittany Maynard who traveled and relocated her family's life to pursue MAiD, as it was not available in her home state at the time. However, not all terminally ill patients and their families have the means to travel. This discrepancy means that only patients in certain regions or socioeconomic statuses have their autonomy respected, leading to a form of healthcare inequality that deeply impacts their quality of life. 

Moreover, even in places where MAID is legal, socioeconomic barriers can prevent equal access, leaving the most vulnerable patients without the ability to make this critical end-of-life decision. The injustice is further compounded by the violation of patient autonomy and the ethical principles of beneficence and non-maleficence. Terminally ill patients often face unbearable suffering that cannot be adequately managed by existing medical interventions. Denying them the option of MAID forces them to live in conditions they find intolerable, stripping them of their dignity and control over their own lives. This situation not only contravenes the ethical duty to alleviate suffering but also undermines the principle of self-determination, a core value in medical ethics. The lack of MAiD availability can be seen as a failure to recognize and uphold the rights of terminally ill patients, thereby highlighting significant gaps in justice and compassion within healthcare systems. 

Additionally, there is also a lack of justice and fairness of individuals with terminal illnesses who still are not considered eligible.  There are concerns about potential coercion, especially for vulnerable populations such as the elderly or those with disabilities, which could undermine the principles of justice (Hoffman: Columbia Journal). However, simultaneously among many stakeholders for this ethical question are those with neurological diseases. Especially since MAID policies require individuals to be able to self-administer (excluding those with diseases such as ALS). Alzheimer's, dementia, and ALS are considered terminal. In general, a patient who lacks decision-making capacity does not lose their right to autonomy - their autonomy can be exercised for them by a surrogate decision-maker. (ALS Association) However, in both Canada and the US MAID can only be pursued by a patient who has medical decision-making capacity. Decision-making capacity for individuals with dementia for example is examined on a case-by-case basis using a series of interviews and assessing the context in which the person lives socially. And so the challenge for many patients with neurodegenerative illnesses like ALS is not lack of decision-making capacity - it's the lack of ability to submit a written request for MAID and/or self-administer medication by the time their disease has progressed to a point where they have a prognosis of six months or less. So how is it fair to exclude these individuals from Medical Aid in Dying? It is understood, however, that the point of this eligibility limitation is to avoid exploitation and perhaps coercion from very vulnerable individuals. But, perhaps no coercion is involved. These patients are still capable of expressing their wishes and understanding their condition. Therefore, denying them the option of MAID solely based on their physical inability to self-administer the medication seems unjust and fails to accommodate the unique challenges posed by their conditions. This exclusion not only undermines their autonomy but also imposes additional suffering by leaving them without a viable option to end their lives on their terms, highlighting a significant gap in the compassionate application of MAID policies. 

A seemingly obvious solution is making MAID part of an advanced directive so that both the past self and the present agree. But this also brings up the question of whether the past self even matters in these scenarios.  Additionally, disability rights advocates argue that investing in expanding access to MAiD may divert attention and resources away from efforts to improve palliative and end-of-life care for all patients. 

Another argument is that people or society perhaps is under-informed about what life with a disability can be like. So under the current economic, employment, housing, and medical circumstances, the availability of MAiD could sound equivalent to state-sponsored eugenics or social Darwinism under disguise. This perspective addresses that perhaps rather than having to care for and support elderly, disabled, sick and dying people the state instead kills off a large amount of that population under the disguise of an independent choice that upholds patient autonomy. So if states like New Jersey really wanted to support the autonomy of the disabled or terminally ill they might be better off making their lives better with more dignified options in how to move forward, be supported, maintain steady familial relationships, and other basic necessities. 

Mental Illness Consideration

Author: Pixabay, User: GDJ

Another factor to consider along with how Medical Aid in Dying presents a justice and fairness issue is the possibility of Medical Aid in Dying becoming an option for Mental illness. Although this paper is mainly focused on New Jersey and the U.S. regulations as Canada plans to make MAiD available for those with mental illnesses it also will raise discussions of MAiD for those with mental illnesses in the United States eventually. An article from the Columbia Bioethics Journal ‘Voices in Bioethics’ article attempts to “debunk” the popular notion that individuals with terminal illnesses “would decline MAiD if only they had better disability services or support” by saying that it is “...disingenuous to the extent that it ignores the fact that people choosing MAiD are actively dying.” It also goes on to say that  “The ever-growing body of evidence that MAiD laws can adequately protect against abuse and the mythic slippery slope has assured many that their fears will not materialize.” This author emphasizes that this abundance of data on limited abuse can encourage other states to legalize MAiD. This paper was written in 2023 and while it focuses on the United States it fails to account for the impact how MAiD will become available for those with mental conditions (in Canada) in 2027. This is particularly important because as perhaps MAID becomes available to those with mental conditions in the coming years the line that was drawn requiring a 6-month prognosis to die becomes blurry or even gone.  So this brings into question how those with disabilities that society deems not fair to live with could be coerced into MAID. Additionally, it perpetuates society's perceptions of individuals with mental illnesses. 1 in every 8 people in the world lives with a mental disorder or 970 million according to the World Health Organization (WHO) but a fraction of this population is severe enough to be considered for MAID. Yet how one can be eligible becomes extremely unclear. It could lead to unintended outcomes, such as increased pressure on vulnerable individuals to choose euthanasia or the devaluation of life for those with mental illness.  In a way expanding MAiD to include those with mental conditions returns society to social darwinism, as said above when addressing disability advocates. This is because with a population as vulnerable as those with mental conditions coercion will happen leading to the possibility of abuse. This will in turn skew the statistics of the abuse of MAiD. 

Another perspective on the mental illness dilemma suggests that MAiD should be accessible to individuals with mental illnesses because the medical research field knows so little about physiological suffering and, therefore, it is our duty to offer MAiD (Martin). This is especially true for extreme psychiatric cases where effective treatment options are limited or non-existent. Advocates for this view argue that, in the face of severe and unrelenting psychological suffering that current medical interventions cannot alleviate, MAiD represents a compassionate and humane response. This approach recognizes the profound distress that some individuals with mental illnesses endure, acknowledging that, in certain cases, alleviating this suffering through MAiD might be the most merciful option available.

This perspective posits that offering MAiD to those with extreme psychiatric conditions is a way to appropriately care for individuals whose suffering is otherwise intractable. It aligns with the principle of autonomy, allowing individuals to make deeply personal decisions about their own lives and deaths. By providing an option for MAiD, society can respect and validate the experiences and wishes of those whose mental anguish renders their lives unbearable. This could be seen as a recognition of the validity of their suffering and an extension of the same rights afforded to those with terminal physical illnesses.

However, this position raises significant ethical concerns regarding justice and fairness. While increasing autonomy, offering MAiD to individuals with mental illnesses without addressing the systemic issues underlying their suffering may be unjust. It potentially sidesteps the critical need for better mental health care infrastructure, more comprehensive research into psychiatric conditions, and improved access to mental health services. Providing MAiD as an option might inadvertently suggest that society has given up on finding effective treatments or providing adequate support for these individuals, thus failing to address the root causes of their suffering.

Moreover, the criteria for determining eligibility for MAiD in the context of mental illness are currently unclear and fraught with ethical challenges. Mental illnesses often fluctuate in severity, and patients' decision-making capacities can vary over time, complicating the assessment of whether their desire for MAiD is a stable and reasoned choice. The potential for abuse, coercion, and misjudgment is significantly higher in this vulnerable population, making it difficult to establish clear and ethical guidelines for eligibility. Therefore, while the expansion of MAiD to include individuals with mental illnesses may seem like a way to enhance autonomy and compassionately address extreme suffering, it is fraught with ethical complexities. It underscores the need for more information, better mental health care, and a deeper understanding of psychiatric conditions before such a practice can be ethically justified. Without addressing these fundamental issues, offering MAiD to those with mental illnesses risks being a quick fix that overlooks the deeper, systemic problems in mental health care and the profound ethical implications of such a decision.

Another issue or consideration of MAID is how clear is it to understand the reasons for which a patient wants MAiD.  This is relevant because if it is unclear whether the patient is making an independent decision, how is MAiD as a whole just and fair for the disability population as a whole? Patients are required to make decisions regarding MAID individually without anyone telling them to. While in most cases family members either agree with their decision or hope to persuade someone against using MAID, external pressures can still expedite a patient's desire for MAID. For instance, John Sandeen was diagnosed and had been living with HIV for several years, however at a certain point no amount of medication was controlling the disease and he moved on to pain management. For the longest time, he faced judgment regarding HIV (Gross: NYT). Although It is not certain one can interpret this as a factor in his choice for MAID. Meaning he was indirectly pressured over several years due to being worn down by those who judged and bullied him. Even though this was not direct coercion it still shows how MAiD is not always in the best interest of patients as the ways in which they could be pressured are unknown.

Conclusion

Medical Aid in Dying (MAiD) remains a complex and contentious ethical issue that intersects with fundamental principles such as autonomy and justice. Reviewing the arguments, it is evident that MAiD can indeed enhance patient autonomy by providing terminally ill individuals with the power to control the timing and manner of their death, thus preserving their dignity in their final moments. This perspective is rooted in the core bioethical principle of respecting individual choices and values, particularly when facing unbearable suffering and diminished quality of life. For many, the option of MAiD can alleviate existential distress and provide a sense of peace and control during an otherwise turbulent period.

However, MAiD also raises significant concerns regarding justice and fairness. The disparate availability of MAiD across different states and socioeconomic groups creates a profound inequity. This disparity forces some patients to endure prolonged suffering due to legal and logistical barriers, which underscores a critical gap in healthcare equality. Additionally, current MAiD policies often exclude individuals with neurodegenerative diseases who are unable to self-administer the medication, further highlighting an area where justice is not served. These exclusions suggest a need for policy adjustments to ensure that all terminally ill patients, regardless of their physical limitations, can access this end-of-life option if they choose.

The potential expansion of MAiD to individuals with mental illnesses presents additional ethical dilemmas. While this expansion could be seen as a logical extension of respecting autonomy, it risks exacerbating vulnerabilities and possible coercion among a population that may already face significant societal and psychological pressures. The blurred lines of eligibility criteria for mental illness pose a serious risk of abuse and misapplication, raising fears of a slippery slope where the value of life is diminished. This scenario necessitates rigorous safeguards and a cautious, well-regulated approach to prevent undermining the principle of beneficence.

A major implication of these issues is the need for a balanced approach that upholds both autonomy and justice. Policymakers must strive to create equitable access to MAiD while ensuring robust protections against coercion and abuse. This includes revising eligibility criteria to include those with neurodegenerative diseases, establishing comprehensive palliative care programs, and ensuring socioeconomic barriers do not impede access. Furthermore, public education and societal support systems must be strengthened to ensure that individuals considering MAiD are making truly informed and voluntary decisions free from external pressures.

In conclusion, while MAiD can significantly enhance patient autonomy, it concurrently highlights systemic injustices and ethical complexities that must be addressed. Both qualities of MAiD—enhancing autonomy and revealing justice issues—can coexist, and it is crucial to navigate this duality with careful ethical consideration and policy refinement. By doing so, society can respect individual end-of-life choices while also promoting fairness and safeguarding vulnerable populations. The broader implications extend beyond MAiD, urging a reevaluation of how we support terminally ill and mentally ill individuals in making empowered, dignified decisions about their lives and deaths.

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