Columbia Social Work Review_2024_Digital.pdf COLUMBIA SOCIAL WORK REVIEW, VOL. XXII | 5 4 | COLUMBIA SOCIAL WORK REVIEW, VOL. XXII INSPIRATION FOR ARTICLE When my mother died in 2018, I became one of many people throughout human history irrevocably impacted by grief, and a reverent student of its power to disrupt, transform, and heal. When the COVID pandemic began, I supported people in the throes of grief and worked with people at the end of life. I heard patients and families inquire about medical aid in dying during my second-year practicum in oncology social work. I wrote my final research paper on the topic for Dr. Hara’s policy course because I wanted to better serve patients and their loved ones. Although I have my own views on the topic, it was important to me to write this article with a social work lens, and with respect for multiple perspectives and lived experiences. It is my hope that readers see the humanity of multiple perspectives when reading it. Thank you to the primary editing team who made this publication a reality: Angelyn, Chloe, and ClaraGrace. Thank you also to the Editors-in-Chief Brenna and MacKenzie. I dedicate this article to my beautiful mother, Cherylyn Smith, for bringing me into this world and for teaching me so much when she left it. Originally from California, I am focusing on Integrated Practice and Programming at CSSW. I work as a Research Assistant at the Center for Prolonged Grief, where I interview survivors of the 2001 World Trade Center attack about their grief experiences. My goal is to work as a medical social worker and provide psychotherapy to bereaved people and communities. STEPHANIE VERONICA SMITH COLUMBIA SOCIAL WORK REVIEW, VOL. XXII | 7 6 | COLUMBIA SOCIAL WORK REVIEW, VOL. XXII SOCIAL WORK AND THE NEW YORK STATE MEDICAL AID IN DYING ACT ABSTRACT Medical Aid in Dying (MAiD) is garnering increasing attention throughout the world. Since 1998, 14 states and Washington D.C. have MAiD laws in the United States. For the eighth time in as many years, the New York State legislature has introduced MAiD legislation, and the Medical Aid in Dying Act is currently in committee in both the Assembly and the Senate. Although this legislation has failed in New York State in the past, it is increasingly supported by New York voters (Granquist, 2024). The MAiD debates in New York state, along with data from U.S. jurisdictions with MAiD laws, highlight important considerations about end-of-life choices and how they intersect with social work values. Social workers can gain valuable insight into supporting people at the end of life, engage in self-reflection on their own beliefs and biases related to end- of-life choices, encourage self-reflection of medical professionals, and advocate for equity in healthcare within medical institutions and through social welfare policy (Schroepfer et al., 2022). This discourse can benefit patients interacting with the health care system regardless of MAiD’s outcome in New York State. STEPHANIE VERONICA SMITH A s of April 2024, the Medical Aid in Dying (MAiD) Act is in committee in both the State Assembly and Senate (A995/ S2445) in New York State (N.Y. Legis. Assemb, 2023). It proposes the legalization of a process by which terminally ill people can access medication that will end their life. The MAiD Act specifies that this option is only available to people diagnosed with a terminal illness, which is defined as a physician determining they will live six months or less due to their illness. Multiple safeguards are defined in the legislation to prevent coercion from medical institutions and people who might benefit financially or otherwise from a person’s death. For example, MAiD outlines the process by which terminally ill patients can request medication: patients must make both an oral and written request to a physician, the physician will then examine the patient to confirm whether they are terminally ill and have the capacity to make the decision, and a consulting physician must confirm. Though it is not a requirement, if physicians have concerns about any patient’s capacity to make the decision, they are recommended to refer the patient to a licensed psychiatrist or psychologist to assess the patient’s mental health and capacity (N.Y. Legis. Assemb, 2023). There are also guidelines governing how physicians engage in consultations with potential MAiD patients. These include a requirement for physicians to provide education about the patient’s treatment options and alternatives to MAiD such as hospice and palliative care. If prescribed the medication, there are strict guidelines that a patient must administer the medication to themselves and ingest it, and it must not be taken in a public space. Patients can also revoke their request for the medication at any time or simply elect to not take the medication even if they receive it. Physicians also have the right to choose not to incorporate MAiD in their practice or refer any patient who is interested in MAiD to another physician (N.Y. Legis. Assemb, 2023). COLUMBIA SOCIAL WORK REVIEW, VOL. XXII | 9 8 | COLUMBIA SOCIAL WORK REVIEW, VOL. XXII The MAiD Act aims to ethically expand the options for people at the end of life when they are terminally ill so they can die with choice and dignity. Although it is not explicitly stated in the Act, MAiD also attempts to address the problem of society’s limited conceptualization of autonomy at the end of life, especially as it relates to suicide. As a result, part of what is being addressed is a societal exploration of what is ethically permissible when choosing to end one’s life. The MAiD Act aims to address these problems through collaboration with patients, healthcare providers, and policymakers in New York State (N.Y. Legis. Assemb, 2023). Although social workers are not explicitly mentioned in the MAiD Act, the policy impacts the role of social workers and their engagement with people they serve. Whether or not MAiD passes in New York, the related discourse is crucial for social workers to understand. This paper will explore the nuances of the MAiD debate and its interaction with social work values. It will also provide information about the spectrum of end-of-life options currently available to New York residents, how social workers can prepare individually and within their workplaces for end-of-life conversations, and advocacy possibilities for a just and equitable healthcare system. MAID CONSIDERATIONS THE DISCOURSE ABOUT MAID AND SUICIDE A major MAiD debate involves its relationship to suicide. Some people classify MAiD under the umbrella term “Physician-Assisted Suicide,” which includes practices like euthanasia that are completed by physicians rather than the patient (Schroepfer et al., 2022, p.820). Proponents of the Act generally argue that MAiD is distinct from suicide. On a practical level, characterizing a death by MAiD as suicide can prevent life insurance beneficiaries from receiving claims (Parker et al., 2004), meaning that a patient’s end-of-life wishes may not be honored. Conflating MAiD with suicide also means that prescribing physicians might be vulnerable to legal ramifications including felony charges. Although suicide is no longer considered illegal in any state, there are state laws, including in New York, that outlaw aiding suicide. New York Penal Law deems “a person guilty of promoting a suicide attempt when he intentionally causes or aids another person to attempt suicide” and classifies it as a class E felony with a 2-to-5-year sentence in prison (Promoting a Suicide Attempt, 2014). By distinguishing MAiD from suicide in legal documentation, a patient’s end-of-life wishes are more likely to be honored, and there will be less liability for physicians and healthcare institutions if they choose to engage in MAiD. Beyond practical considerations, framing MAiD deaths as suicides reflects deep sociohistorical ties to Western nations' perspectives on suicide. The legal codification of suicide enforced government control over what constituted sin, crime, and property rights. While there are efforts by mental health professionals to avoid stigmatizing language such as “committing suicide” in modern times, the language of “commit” is rooted in the idea that ending one’s life is a crime with legal consequences. Historically, this included government forfeiture of property to the detriment of non-elite families and communities (Chang, 2018). Social stigma was generally a horrific byproduct for the people most impacted by a suicide death, and this legacy persists for many people. Attempts to conflate MAiD with suicide–and potentially punish the patients, communities, and physicians who prescribe MAiD medications–perpetuates stigma for people suffering from a terminal illness who seek options at the end of their lives. OPPOSITION TO MAID New York State legislators who voted against MAiD prevailed in past legislative sessions. It most recently failed in 2022 despite polls indicating voter support. According to a 2021 poll of New York voters, 58% supported MAiD, 37% opposed, and 5% were unsure (Marist College, 2021). Opponents of MAiD, primarily disability rights organizations such as the Center for Disability Rights in New York (CDRNYS) and Not Dead Yet, advocate against MAiD and argue it should be categorized as suicide. CDRNYS calls the bill an “existential SOCIAL WORK AND THE NEW YORK STATE MEDICAL AID IN DYING ACT STEPHANIE VERONICA SMITH COLUMBIA SOCIAL WORK REVIEW, VOL. XXII | 11 10 | COLUMBIA SOCIAL WORK REVIEW, VOL. XXII threat to disabled New Yorkers,” claiming that the government will “abdicate its responsibility” to equal protection related to suicide prevention services for people living with disabilities if it is passed (CDRNYS, 2022). Not Dead Yet echoes these concerns, stating that people living with disabilities will experience increasing levels of coercion to end their lives rather than seek life-saving care, especially those of low socio-economic status who cannot afford expensive medical treatment (Not Dead Yet, 2022). The New York State Catholic Conference joins these organizations, claiming that “ambiguous” aspects of the bill weaken accountability for healthcare professionals, diminish protections for people living with disabilities, and create further risks for those choosing to live with a terminal diagnosis despite treatment possibilities available to them (New York State Catholic Conference, 2024). Organizations such as CDRNYS distrust the safeguards put in place to ensure coercion is not active in MAiD. Experts from the United Nations (UN) join them in warning about a global slippery slope toward eugenic- influenced pressures and ableist assumptions in medical practices that may eventually engulf low-income, terminally ill people along with other people living with disabilities. These warnings were issued in 2021 as a response to Canada’s decision to expand MAiD to people with disabilities in addition to people with “grievous and irremediable conditions” (Quinn et al., 2021, p.1). Even before the expansion of Canadian MAiD laws, a 2019 UN report that investigated MAiD practices in Canada determined that “there is no protocol in place to demonstrate that persons with disabilities deemed eligible for assistive dying have been provided with viable alternatives” (Devandas-Aguilar, 2019, p. 13). There were also reports from people living with disabilities in institutions regarding pressure to seek MAiD. U.S. disability rights organizations echo similar concerns to those from Canadian activists. CDRNYS (2022) states that the current language of the New York MAiD legislation deems people living with disabilities and conditions which could be life-threatening without treatment, such as diabetes, eligible for MAiD even if treatment options exist. They argue that people who cannot afford expensive treatments may experience financial pressure to pursue MAiD. As such, many disability rights advocates do not welcome an expansion of end-of-life options to include MAiD (CDRNYS, 2022). While it is not yet possible to know how MAiD will impact New York, statistics from other states with similar laws provide insight. Kozlov et al. (2022) analyzed 23 years of aggregated data across 14 states and Washington D.C. The data determined that patients who died by MAiD “tend to be older, white, educated, and diagnosed with cancer across all jurisdictions where MAiD is legal” (p. 3042). These statistics are consistent in New York’s neighboring state New Jersey where MAiD has been legal since 2019. According to a 2022 MAiD data report from the Chief State Medical Examiner’s office, 90% of people who received medication for MAiD were white, 83% were over the age of 65, and 58% had at least a bachelor’s degree. The report also states, “heart disease was the leading cause of death in the general population in New Jersey…followed closely by [cancer]. However, for those participating in the [MAiD] program in New Jersey, [cancer] is the leading underlying illness accounting for 48% of cases,” while cardiovascular disease accounted for 14% of cases (The Office of the Chief State Medical Examiner, 2023, p.6). MAiD advocates interpret this data as evidence that MAiD is neither abused or misused to target people living with disabilities in states where it is legal. Perhaps what is more important than countering MAiD opponents’ critiques and conjectures with statistics from other states is to understand and acknowledge their concerns. The eugenics movement that swept the world through the late 19th and early 20th centuries had an indelible impact on the United States. The disability rights groups that oppose MAiD are speaking to the history of forced institutionalization, sterilization, and euthanasia rooted in a pseudoscientific endeavor to undermine people with disabilities as less worthy of dignity and autonomy (EveryBody, 2013). Recounting this history leads disability SOCIAL WORK AND THE NEW YORK STATE MEDICAL AID IN DYING ACT STEPHANIE VERONICA SMITH COLUMBIA SOCIAL WORK REVIEW, VOL. XXII | 13 12 | COLUMBIA SOCIAL WORK REVIEW, VOL. XXII rights groups to draw parallels between the past and the present when legislation such as MAiD arises. Part of their concern also stems from international aid-in-dying practices. In addition to UN experts’ concerns in Canada, disability rights groups look to examples in Europe. The Netherlands has practiced euthanasia since 1985. It was initially an unofficial but tolerated practice and was eventually codified into Dutch law in 2002 (Groenewoud et al., 2021). The Dutch have expanded their practice from focusing solely on terminally ill people to include people suffering from psychiatric disorders that are deemed “unbearable and irremediable,” and many of which are considered disabilities in the United States (van Veen et al., 2022, p.1). In April 2023, the Dutch law expanded to include children of all ages who have a terminal illness (The Guardian, 2023). Although many safeguards are part of MAiD laws in U.S. jurisdictions, including age restrictions, disability rights groups view the evolution of Dutch laws as an example of a gradual return of eugenics. SUPPORT FOR MAID The MAiD Act is sponsored by the Assembly Health Committee Chair Amy Paulin in the New York State Assembly with 50 co-sponsors, and the New York Senate Judiciary Chair Brad Hoylman-Sigal with 12 co- sponsors. The reintroduction of the bill in 2021 (then A.4321/S.6471) led to unprecedented advocacy with supporters sending more than 3,600 letters to state lawmakers (Granquist, 2024). Although the Act did not pass in 2022, a 2021 Marist poll showed that 58% of New York voters supported MAiD at that time (Marist College, 2021, p.27). Recent polling data conducted by YouGov and commissioned by Death with Dignity and Completed Life Initiative revealed that 72% of New York voters support MAiD, 23% oppose, and 6% are not sure (Hoffman, 2024). The poll shows that support is consistent across demographics. This includes Catholics (65%) and people with disabilities (73%) even though Catholic leaders and disability rights organizations are MAiD’s most vocal opponents. MAiD is also supported in New York by organizations who seek to expand options to terminally ill people at the end of life, including End of Life Choices New York (2021) and Compassion and Choices (2024). As the names of organizations who support MAiD emphasize, they view the legislation as empathetic support for terminally ill people who wish to die with choice and dignity. They also make a distinction between MAiD and suicide. Death with Dignity (2024) defines the difference by explaining that suicide is “the act of taking one’s own life voluntarily and intentionally,” whereas MAiD involves “an adult patient with terminal illness who is deemed mentally competent [who] chooses to hasten their death through a physician’s assistance.” Some national professional associations agree with these distinctions. The American Public Health Association (2014) explains that MAiD is part of a “patient’s right to self-determination,” and that a terminally ill person can assess what constitutes a “good death” according to their circumstances. The American Medical Women’s Association and the American Medical Student Association also emphasize MAiD as part of patient autonomy (Schroepfer et al., 2022). In January 2024, the New York State Bar Association (NYSBA) Task Force on Medical Aid in Dying released its Report and Recommendations on MAiD in New York. The report included a summary of statements from a public hearing conducted in November 2023. Advocates included people living with life-threatening illnesses who described their fears of not having MAiD available if treatment is no longer viable or desirable. Others were family members and loved ones of people who died with terminal illnesses while experiencing excruciating pain. Some described the attempts, completions, or requests from their now deceased loved ones to end their own lives knowing that MAiD was not an option in New York and the trauma they experienced as part of their bereavement. Other supporters were family members and loved ones of people who were able to utilize MAiD as residents in states where it is legal. They described the dignity, peace, and community support these people were able to experience by having more control over the circumstances of their death (New York State Bar Association, 2024). SOCIAL WORK AND THE NEW YORK STATE MEDICAL AID IN DYING ACT STEPHANIE VERONICA SMITH COLUMBIA SOCIAL WORK REVIEW, VOL. XXII | 15 14 | COLUMBIA SOCIAL WORK REVIEW, VOL. XXII While the NYSBA Task Force ultimately endorsed the New York MAiD Act, the final report contained recommendations for safeguards for “special populations,” as well as funding, insurance, and training for healthcare professionals (p.6). The overall aims of these recommendations are to ensure that patients fully understand their rights and end-of-life options and that MAiD is an equitable option available to people with terminal illnesses despite their insurance coverage or socioeconomic status. This last concern is based on federal laws that prohibit federal funding to pay for MAiD prescriptions which precludes people dependent on federal insurance options such as Medicare and Medicaid from utilizing MAiD. While this recommendation is counter to the concerns of opponents who worry that low-income people will be coerced into utilizing MAiD, the NYSBA supports the recommendation with data indicating there are people interested in utilizing MAiD in states where it is legal but are unable to do so because the prescription is prohibitively expensive. Furthermore, the report points to biases and inequities throughout the healthcare system that prevent adequate access and education about end-of-life options to people from lower socio-economic and socially-marginalized groups. They claim these inequities largely contribute to underutilization of MAiD in marginalized communities (p. 29). CURRENT END-OF-LIFE OPTIONS IN NEW YORK STATE There exists a spectrum of end-of-life choices for patients to legally explore in New York, and social workers already engage in conversations and practices with patients around these choices. If MAiD passes in New York, social workers are likely to be instrumental in providing education and support to patients through MAiD. Fujioka et al. (2018) conducted a literature review from jurisdictions where MAiD is legal, and concluded, “social workers… are integral in the execution of MAiD in tandem with physicians and adopt a wide range of roles” (p. 1572). As such, social workers and the communities they serve can benefit from understanding patient rights and the spectrum of end-of-life options for terminally ill patients regardless of MAiD’s success in New York. The best-known options related to end-of-life care are advanced directives. Advanced directives are documents that explain a person’s medical care choices if they are unable to communicate them. This includes orders that can be specified in a Living Will such as Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders as well as Medical Orders for Life-Sustaining Treatment (MOLST) that guide families and medical professionals in determining whether life-saving measures should be utilized for a patient during critical situations. Another advanced directive is the health care proxy, which cedes control to one or more persons whom the patient appoints to make medical decisions on their behalf if they cannot communicate their wishes. Health care proxies can use a Living Will to carry out a person’s wishes, but if no Living Will exists, they can still legally make decisions on behalf of the patient (New York State Attorney General, n.d.). If a health care proxy is not assigned and a person cannot communicate their wishes, state laws determine who can make decisions on behalf of a patient (U.S. Department of Health and Human Services, 2022). In New York State, that person would likely be a legal guardian, a spouse or domestic partner, or an adult child (New York State Department of Health, n.d.). Health care professionals such as social workers can provide education and serve as witnesses for advanced directives. Hospice and palliative care services are also available to terminally ill New Yorkers. Hospice provides support to patients who are terminally ill when curative approaches are either not desired by the patient or are not available to the patient at any point from diagnosis through treatment. It includes comprehensive services such as nursing, pain management, social work, and spiritual care. Palliative care is available to patients with chronic illnesses that are not necessarily terminal and who desire pain management assistance and other supportive services either with or without treatment (U.S. Department of Health and Human Services, 2021). Both services are fully covered by Medicare and Medicaid and are generally fully covered by private insurance plans as well (VITAS Healthcare, n.d.). SOCIAL WORK AND THE NEW YORK STATE MEDICAL AID IN DYING ACT STEPHANIE VERONICA SMITH COLUMBIA SOCIAL WORK REVIEW, VOL. XXII | 17 16 | COLUMBIA SOCIAL WORK REVIEW, VOL. XXII Two New York State laws, the Palliative Care Information Act (PCIA) and the Palliative Care Access Act (PCAA) require physicians, nurse practitioners, general hospitals, nursing homes, home care agencies, enhanced assisted living residences, and special needs assisted living residences to offer information and counseling concerning palliative care and end-of-life options and facilitate access to such care. Despite these laws, New York State ranks last in the United States for hospice utilization with reports that PCIA and PCAA are largely ignored and unenforced (New York State Bar Association, 2024). When education, counseling, and referrals to palliative care and hospice do occur, social workers are generally involved in some or all stages of the process. Robust and consistent practices in providing education about hospice and palliative care are recognized as crucial MAiD safeguards for proponents and opponents alike. Another legal option for terminally ill patients is Voluntary Stopping of Eating and Drinking (VSED). Although VSED is not without controversy, it is generally protected as a patient’s right to determine their own treatment, including refraining from treatment. It is an option that can be specified in an advanced directive, which includes refusal of feeding tubes to sustain a patient’s life (End of Life Choices New York, 2021). Although it is generally differentiated from suicide, there is no standardization about how it is characterized on a death certificate which can impact a patient’s life insurance policy and end-of-life wishes (Uemura et al., 2023). It is also a difficult, physically grueling process that requires a strong will on the part of a patient and their caregivers. As such, some families of New Yorkers who died by VSED are strong advocates for MAiD (New York State Bar Association, 2024). If a terminally ill New York resident is interested in pursuing MAiD, it is possible to travel to another state or country where MAiD is legal. While most other states require a person to be a resident, Oregon and Vermont lifted the ban on non-residents in 2023 (Paine, 2023). Traveling for MAiD is not ideal for many people at the end of life, primarily because it can be emotionally difficult, which is a major impetus for proponents of the law in New York State (N.Y. Legis. Assemb, 2023). It is also prohibitively expensive for many people and requires time, planning, and resources that many people at the end of their lives may not have. Families of New Yorkers who suffered because they were unable to travel for MAiD are also strong advocates for the legislation (New York State Bar Association, 2024). MAID AND SOCIAL WORK SOCIAL WORK ASSOCIATIONS AND MAID There are currently neither standards about social workers’ engagement with MAiD nor specifications in the New York MAiD Act about social workers’ roles. Most social work associations do not take an official position on the issue but affirm that the profession’s ethics and values support and advocate for patients’ rights and end-of-life choices. The National Association for Social Workers (NASW) Standards for Practice in Palliative & End of Life Care states, Social workers working in palliative and end of life care are expected to be familiar with the common and complex bioethical considerations and legal issues [including MAiD]. End of life issues are recognized as controversial because they reflect the varied value systems of different groups (NASW, 2004). This statement emphasizes the holistic nature of social work in navigating the complexities of end-of-life issues with individuals and families. Cultural awareness and sensitivity are upheld as important aspects for social workers engaging in palliative and end-of-life care. The Association of Oncology Social Work (AOSW) expands on the NASW statement by upholding “the right of every patient to make decisions about living and dying that are reflective of their goals and values and are consistent with the law of their jurisdiction” (Schroepfer et al., 2022, p. 823). Both associations highlight the importance of self-reflection in social work when supporting individuals and families addressing end-of-life concerns. Although these statements point SOCIAL WORK AND THE NEW YORK STATE MEDICAL AID IN DYING ACT STEPHANIE VERONICA SMITH COLUMBIA SOCIAL WORK REVIEW, VOL. XXII | 19 18 | COLUMBIA SOCIAL WORK REVIEW, VOL. XXII to social work values, they do not explicitly explore end-of-life care options, including MAiD, through the lens of social work values. Such an exploration reveals that some social work values align with MAiD policies and practices while others do not. SOCIAL WORK VALUES ALIGNED WITH MAID Arguments in favor of MAiD emphasize it as an end-of-life choice that promotes a patient’s dignity. This directly relates to the social work value of upholding the dignity and worth of a person (NASW, 2021). A 2022 comprehensive review of data from Oregon, collected from the time the law passed in 1998, reveals that these values are consistent with utilization of MAiD in the state. The main concerns reported by Oregonians who utilized MAiD related mostly to their loss of autonomy and dignity and their inability to engage in activities that made life enjoyable (Oregon Health Authority: Public Health Division, 2023). This indicates that MAiD is serving terminally ill Oregonians as intended by centering and upholding their choices and dignity. The MAiD Act also respects the desires of many terminally ill people to experience their end of life within the meaningful and comfortable environment of their own home. The New York MAiD Act explicitly mentions the highly publicized death of Brittany Maynard, a 29-year-old resident of California who died from a brain tumor. Maynard traveled to Oregon for MAiD and advocated for its enactment in California as she was dying so that others could have the option to die at home. Her advocacy strongly contributed to the enactment of California’s law in 2015 (N.Y. Legis. Assemb, 2023). Citing the example of Brittany Maynard, proponents of the law aim to support terminally ill New York residents so they do not have to cross state lines to receive MAiD. This resonates with statistical data showing that terminally ill people generally prefer to die at home. Roughly 93% of MAiD participants in Oregon have chosen to die at home since the law was passed (Oregon Health Authority: Public Health Division, 2023). New Jersey reported similar statistics in 2022 with 92% of patients utilizing MAiD dying at home (The Office of the Chief State Medical Examiner, 2023). The New York bill contains similar language to Oregon’s law and is likely to promote dignity for terminally ill people who utilize it in New York as well. SOCIAL WORK VALUES UNALIGNED WITH MAID There are also social work values that do not align with MAiD, particularly with regard to social justice. Oppositional arguments cautioning against a slippery slope towards eugenicist practices resonate with some communities of color who have been impacted by abuses of the eugenics movement. A comparison of two recent polls of New York voters demonstrate a correlation between trust in medical providers and support for MAiD, particularly among Black voters. A 2023 Siena College poll found 58% of respondents support “legislation that would allow a doctor to prescribe lethal drugs that a terminally ill patient with demonstrated decision-making capacity could take on their own in order to end their own life” (Siena College Research Institute, 2023, p. 5). Just two months later in January 2024, a poll conducted by YouGov found 72% of respondents support pending legislation that “would allow a terminally ill patient–for whom two doctors have determined has under six months to live–the right to request and receive a prescription for medication to end their life” (Hoffman, 2024, p. 1). Support for MAiD among New Yorkers proved far higher in the YouGov poll (2024) emphasizing patient autonomy compared to the Siena College poll (2023), which highlights doctors prescribing “lethal drugs” to patients. Black voters were particularly attuned to the nuances of each poll’s phrasing: 66% of Black voters stated that they support MAiD in the YouGov poll (Hoffman, 2024) while only 28% stated that they support MAiD in the Siena College poll (2023). Although it is significant for New York voters in general that the MAiD Act centers patient autonomy over the power of medical providers, this is especially true for Black Americans who have historically suffered, and continue to suffer, life-threatening and sometimes fatal harms at the hands of medical institutions. SOCIAL WORK AND THE NEW YORK STATE MEDICAL AID IN DYING ACT STEPHANIE VERONICA SMITH COLUMBIA SOCIAL WORK REVIEW, VOL. XXII | 21 20 | COLUMBIA SOCIAL WORK REVIEW, VOL. XXII Considering social workers’ commitment to social justice, it is crucial to examine these nuances and their implications. Structural racism in health care is deeply rooted in U.S. history. Harriet Washington’s book Medical Apartheid (2008), for example, illustrates the lack of transparency, medical experimentation, intentional harm, and even murder of Black Americans throughout history at the hands of medical institutions and how this history reverberates across the U.S. healthcare system today. A 2019 study by Cain & McCleskey further emphasized the impact of structural racism in U.S. healthcare. By conducting focus groups in Los Angeles, California, they determined that while there are a variety of nuanced opinions based on race and ethnicity, African American and Latino participants who opposed MAiD highlighted structural racism in healthcare as a major reason (Cain & McCleskey, 2019, p. 1185). In light of this history and its enduring impact, MAiD raises complex social justice concerns related to inequitable healthcare access for people of color, both across the lifespan and in end-of-life options. Data show people of color generally do not utilize MAiD in states where it is legal, with 95.6% of those who do identifying as white. This seems to refute opponents’ concerns about race-based coercion into MAiD on the part of healthcare institutions. At the same time, it is worth noting that similar disparities exist in hospice and palliative care, which are also underutilized by people of color (Teano, 2020). This is especially true in New York State which has the lowest hospice utilization rate in the nation (New York State Bar Association, 2024). Both proponents and opponents of MAiD point to this data, but for different reasons. MAiD proponents argue that structural racism in health care leads to physicians not discussing hospice and palliative care options with patients of color, even though this information is generally shared, understood, and accessible for white patients. MAiD opponents, however, claim that the underutilization of hospice and palliative care relates to a lack of trust between physicians and communities of color. Overall, this complex landscape indicates that despite low rates of MAiD utilization among communities of color, constant vigilance is needed to ensure misuse does not emerge and to promote social justice in end-of- life care. Social workers have a key role to play in this endeavor. PREPARATIONS FOR MAID AMONG NEW YORK SOCIAL WORKERS Given the increasing support for MAiD in New York, it is prudent for social workers to consider their role in relation to this issue. Understanding the MAiD laws in the context of history, cultural considerations and nuances, social work values, and other end-of-life options available to New York residents covers many crucial elements. The NASW and AOSW encourage social workers to engage in self- reflection to understand whether they can ethically serve a client and to refer them elsewhere if they are unable to do so. Social workers must therefore reflect on their own beliefs and attitudes toward end of life experiences and care and how this shapes their personal views of MAiD (Schroepfer et al., 2022). If they are able to ethically engage, social workers can also explore navigating cultural nuances and different belief systems in relation to MAiD with patients and their families. The holistic perspective of social work provides a unique opportunity to serve as additional safeguards against misuse and abuse of MAiD. By understanding the concerns of proponents and opponents alike, social workers are equipped to ethically discuss MAiD while centering the dignity and rights of all patients, regardless of their medical and end-of- life choices. Social workers should also encourage and support self-reflection, education, and advocacy on the interdisciplinary teams in which they work. Given MAiD’s complex relationship with social justice, it is important for other professionals who engage in conversations about end-of-life options to investigate their own beliefs, biases, and ethics. Social work associations and social workers engaging in end-of-life care can prepare training workshops and materials to guide health care professionals through education and self-reflection on topics such as ableism and racial biases in medicine. They can also collaborate SOCIAL WORK AND THE NEW YORK STATE MEDICAL AID IN DYING ACT STEPHANIE VERONICA SMITH COLUMBIA SOCIAL WORK REVIEW, VOL. XXII | 23 22 | COLUMBIA SOCIAL WORK REVIEW, VOL. XXII Compassion & Choices. (2024). Status of end-of-life legislation. https://www. compassionandchoices.org/in-your-state/new-york Death with Dignity. (2024, January 31). A glossary of terms for discussion. https:// deathwithdignity.org/resources/assisted-dying-glossary/ Devandas-Aguilar, C. (2019, December 19). Visit to Canada: Report of the Special Rapporteur on the rights of persons with disabilities. United Nations. https://www. ohchr.org/en/documents/country-reports/ahrc4341add2-visit-canada-report-special- rapporteur-rights-persons End of Life Choices New York. (2021, March 22). VSED: Voluntarily stopping eating & drinking - end of life choices New York. https://endoflifechoicesny.org/education/ resources/vsed/vsed_overview/ EveryBody. (2013, March 20). Eugenics. EveryBody: An Artifact History of Disability in America. https://everybody.si.edu/citizens/eugenics Fujioka, J., Mirza, R., McDonald, P., & Klinger, C. (2018). Implementation of Medical Assistance in Dying: A scoping review of health care providers’ perspectives. Journal of Pain and Symptom Management, 55(6), 1564-1576. https://doi.org/10.1016/j. jpainsymman.2018.02.011 Granquist, E. (2024, February 8). New York death with dignity: Options at the end of life. Death With Dignity. https://deathwithdignity.org/states/new-york/ Groenewoud, A. S., Atsma, F., Arvin, M., Westert, G. P., & Boer, T. A. (2021). Euthanasia in the Netherlands: a claims data cross-sectional study of geographical variation. BMJ Supportive & Palliative Care. https://doi.org/10.1136/bmjspcare-2020-002573 The Guardian. (2023, April 14). Netherlands to broaden euthanasia rules to cover children of all ages. https://www.theguardian.com/society/2023/apr/14/netherlands-to-broaden- euthanasia-rules-to-cover-children-of-all-ages Hoffman, B. (2024, February 8). New York State polling collaboration on Medical Aid in Dying. Death With Dignity. https://deathwithdignity.org/wp-content/uploads/2024/02/ MAiD_NY_Base_Sample_Jan_2024_crosstabs-Public.pdfabs-Public.pdf Kozlov, E., Nowels, M., Gusmano, M. K., Habib, M. H., & Duberstein, P. R. (2022). Aggregating 23 years of data on medical aid in dying in the United States. Journal of the American Geriatrics Society, 70(10), 3040–3044. https://doi.org/10.1111/jgs.17925 Marist College. (2021, October). Marist poll of 822 New York State adults. Marist Poll. https://maristpoll.marist.edu/wp-content/uploads/2021/10/Marist-Poll_NYS-NOS-and- Tables_202110110852.pdf National Association of Social Workers. (2021). NASW Code of Ethics (Guide to the Everyday Professional Conduct of Social Workers). https://www.socialworkers.org/ About/Ethics/Code-of-Ethics/Code-of-Ethics-English on interdisciplinary practices and procedures in relation to end-of- life options and conversations with patients. Providing opportunities for stronger interdisciplinary teams that are informed and equipped to navigate the nuances of challenging end-of-life conversations can provide a stronger support system for patients, increase possibilities for patient-centered collaboration, and provide more robust advocacy for patients engaging with interdisciplinary healthcare teams. Given the social justice concerns and underutilization of hospice and palliative care in New York, social workers can also strengthen their advocacy roles in relation to MAiD. They can work to inform patients about their rights and the spectrum of end-of-life options available to them while also advocating for more equitable healthcare for patients in general. While proponents and opponents of MAiD come to different conclusions about whether the law should pass, they agree that healthcare equity is a strong safeguard against MAiD abuses. By strengthening equity in the health care system through advocacy, social workers can serve not only as a unifying force in the divide around MAiD but also as social justice leaders serving to remedy longstanding structural inequities in the United States. REFERENCES American Public Health Association. (2008, October 8). Patients’ rights to self- determination at the end of life. https://www.apha.org/policies-and-advocacy/public- health-policy-statements/policy-database/2014/07/29/13/28/patients-rights-to-self- determination-at-the-end-of-life Cain, C., & McCleskey, S. (2019, April 4). Expanded definitions of the ‘good death’? Race, ethnicity and medical aid in dying. Sociology of Health and Illness, 41(6), 1175–1191. https://doi.org/10.1111/1467-9566.12903 CDRNYS. (2022, April 27). Physician assisted suicide deadly for disabled. Center for Disability Rights. https://cdrnys.org/blog/press-releases/physician-assisted-suicide- deadly-for-disabled/ Chang, H. (2018). 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