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Marching to the Beat of Their Own Drum: How Beta-Israel Uses Liturgical Music to Maintain its Roots Within a Foreign Culture
Get PDFKnown as Falasha, Ethiopian Jews lived in isolation for centuries practicing an ancient, pre-talmudic form of Judaism, which traces its origins back to Solomon and Sheba.” It was not until 1984 that this Falasha community, known as Beta-Israel, was covertly airlifted from Sudan during the civil war and brought to the State of Israel. Their arrival was accompanied by quite the culture shock for a variety of reasons, a significant one being religion. Much of the community quickly assimilated into modern society, leaving behind their traditional religious Ethiopian roots. As a result, the Beta-Israel community became a minority, a waning religious sect of Judaism in Israel. Yet, those who maintained their roots continued their practices with full vigor. Included in these practices is their unique liturgy, liturgical music and use of musical instruments in prayer. This paper will examine texts which discuss Ethiopian liturgical music in depth and explore what role this music plays in preserving their community.
Factors Influencing Family Planning in the Buyende District of Uganda
No full textIntroduction The goal of this study was to identify use of family planning (FP) in the Buyende district of Uganda, and what factors influence its use or lack of use. Methods Study participants included 60 women from 18 to 49 years old who lived in the Buyende District of Uganda. This was a mixed-methods study. Descriptive statistics and chi-squared analysis were performed on the survey data to identify factors associated with modern FP use. Qualitative analysis, consisting of an iterative coding process, was used to identify themes that arose in focus groups regarding barriers to FP use. Results Most participants were 20-24 years old (26.7%), married (86.7%), had a primary education (86.7%), and had a mean parity of 5.23 (range 0 to 14). One third of survey participants were currently using a form of modern contraception, and women who spoke to a healthcare provider in the last 12 months about FP were significantly more likely to be using a form of modern contraception (46.2% vs 10.5%, p=0.016). The most common barriers to FP use were side effects (71%), fear of husband disapproval (19.4%), and lack of access (16.1%). Qualitative analysis of focus groups demonstrated 9 major themes that emerged as barriers to FP: misinformation/misconceptions about FP; concerns about side effects; negative community perceptions of FP; lack of education; male opposition to FP; use of traditional methods; distance to health facilities; financial concerns; FP going against religious beliefs. Discussion It is important to continue to address not only the material access to FP and lack of education, but also the gender inequalities that are foundational to the lack of usage where desired
Barriers and Challenges of Immigrant Women’s Access to and Experience of Optimal Maternity Care
No full textWith an increase in immigrant populations, healthcare systems are experiencing a new wave of ethnic-cultural diversity among patients. For the 48.1% of women among global migrants, maternal healthcare services are often the first level of contact with new healthcare systems in countries of resettlement. However, immigrants face many barriers, including socioeconomic and language considerations. As maternal care requires frequent contact with health care services through all stages of pregnancy, ensuring the quality of care is important to protect maternal and infant health. Using a systematic review method analyzing 17 articles from PubMed and Google Scholar in the past 20 years, 3 overarching themes were identified: lack of access to prenatal care, cultural insensitivity during in-hospital settings, and challenge in identifying and experiencing post-partum depression. This literature review reveals the broader influences and contextual variables in maternity care and highlights problems relating to the acceptability and accessibility of maternity services for immigrant women. Overall, this paper reveals the importance of considering immigrants’ socio-cultural context of childbirth practices, creating more accessible prenatal classes, and addressing disparities in postpartum depression. This knowledge can better inform health services delivery and formulate health promotion strategies to address discrepancies in maternal health outcomes. 
The Benefits and Burdens of Meat Consumption: A Historical Analysis
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INTRODUCTION
Human consumption of meat sits at the intersection of culture and health and has profound bioethical implications. Here, we discuss how meat is interwoven with human history and traditions. We review the varied negative impacts of widespread modern meat consumption on health and the environment. Finally, we address the role that the principle of justice plays in allocating this resource. We argue that reducing meat consumption has health and environmental benefits.
I. Historical Background
Throughout history, some cultures have integrated meat into their traditions, from hunting rituals to religious celebrations to summer barbecues. While intimately connected to the human experience, meat consumption is not without consequences, ranging from increased incidence of chronic illness to environmental degradation. The mass production of meat began in the late 17th century as the rise of globalization led to widespread trade of goods, including meat products. While the sale and distribution of meat grew rapidly throughout the 18th century, it was not until 1818 that Elisha Mills opened the first mass-production plant to process pork. The advances made during the Industrial Revolution led to substantial technological improvements and greater efficiencies in meat processing and packing. During the 19th century, meat-packing plants flooded the United States, and eventually, meat became a staple grocery item for many Americans. While consumers enjoyed plentiful access to meat, skeptics such as Upton Sinclair detailed the horrors of the meat-packing industry and the associated health threats to the consumer. This new awareness resulted in the institution of federal regulations and a new era of quality control. Although meat safety has improved over the years, both human health and the environment remain profoundly affected by the externalities associated with meat consumption.[1]
While mass production of meat is a relatively new phenomenon, regular yet limited meat consumption was an essential component of human evolution. Historians characterize the diets of hunter-gatherer tribes as varied and highly nutritious foods, including meat, fruits, vegetables, nuts, and whole grains. Anthropologists studying extant tribes have noticed significantly lower rates of heart disease, diabetes, and cancer, among other chronic illnesses when compared to populations with Western diets. In contrast, as agriculture has expanded and flourished, people have become increasingly dependent on the food and cattle produced by farmers. They were less inclined to eat the highly nutritious and varied meals their ancestors did. This shift in diet has led to periodontal disease, novel infections and parasites from cattle, iron deficiencies, and other health challenges. As communities adopt Western diets, rates of obesity, hypertension, and diabetes rise.[2]
II. A Global Health Crisis
A global human health crisis has resulted from excessive meat consumption and its health impacts. Recent research has found that the ten-year mortality risk for meat consumers increased by over a third and by almost 50 percent for those who consumed excessive quantities of red meat. Other analyses demonstrated the relationship between meat consumption and colorectal cancer. Oncologists have noticed an increased incidence of colorectal cancer and a shift in the age demographic most impacted by it. In one study, consumption of more than two ounces per day of processed meat correlated with an 18 percent increased risk of colorectal cancer.[3] These adverse impacts on human health highlight the systemic complications that arise from meat consumption and the human cost.
III. Environmental Degradation
In addition to impacting human health, these dietary changes have contributed to environmental degradation. Humans conducted animal farming at a staggering scale: in 1961, the world had a standing population of 4.4 billion chickens, a number that increased to 37 billion chickens in 2020. Livestock far outnumbers humans, with a standing population of roughly 46 billion today.[4] Deriving immense quantities of protein from animal sources consumes similarly large amounts of resources. In doing so, rearing animals for meat encroaches upon several planetary boundaries, defined as “boundaries within which we expect that humanity can operate safely,” and includes limits on global freshwater use, land-system change, and climate change.[5] Producing just 1,000 calories of beef consumes an estimated 1,600 liters of water, requires the occupation of an estimated 147 square meters of land for an entire year, and releases 10 kilograms of CO2 equivalent.[6] Additionally, beef production consumes land that farmers could use to produce other protein sources, such as vegetables and grains. Such strains on planetary boundaries and excessive use of environmental resources to produce protein is not sustainable, especially as the global population continues to expand.
The United States has one of the highest rates of meat consumption, with the average American consuming over 250 pounds of meat per year.[7] If the global population consumed meat at this rate, there would be a devastating impact on both global health and planetary boundaries. Protein sources should be viewed as a health resource, as proper protein intake is vital to human health. If over-consuming communities such as the US decreased their intake of meat, the health of both over-consumers and those with limited access to dietary protein and meat would greatly benefit.[8]
IV. Ethical Analysis
Since food is a limited resource, ethicists and physicians should approach conversations regarding meat through the lens of justice. The principle of distributive justice demands that “the benefits and burdens” of meat be “fair, equitable, and appropriate.”[9] Currently, marginalized communities bear the environmental burdens of meat-heavy diets, while not always having access to the benefits. Encroachments upon planetary boundaries caused by meat production and poor health outcomes due to excessive consumption disproportionately impact the most disadvantaged communities. If we, as ethicists, are to encourage equitable distribution of resources around the world, we must also limit the distribution of harm. Though we do not always abide by or apply utilitarian perspectives, in crisis we often adopt a harm reducing principle and work to maximize good and pleasure. When balancing the benefits and burdens of meat consumption, it is vital that we choose a path forward that produces the greatest good or pleasure for the greatest number of people. Utilitarian philosopher Peter Singer, an advocate for animal rights and vegan diets, argues that decreasing meat consumption is “a means toward reducing both human and animal suffering, and leaving a more habitable planet for future generations.”[10] By drastically decreasing the number of cattle, fish, and birds killed and consumed every year, we limit greenhouse gas emissions and create a more sustainable environment—a benefit not only for ourselves, but also for subsequent generations. As we limit human intake of meat and improve the environment, we decrease the acute and chronic disease burden among the population. It is essential to approach discussions regarding meat consumption with an appreciation of both the benefits and burdens to create equitable and health-conscious meat policy that maximizes benefits for the greatest number of people.
CONCLUSION
Meat consumption is causing a crisis in human health and hurting the environment. While meat is often attached to cultural celebrations and daily traditions, decreasing meat consumption and directing land use to more efficient, healthy food production would help both human health and the environment. Excessive consumption of animal protein negatively impacts public health both directly and indirectly through climate change, environmental degradation, and pollution. Current innovations, such as cultured agriculture and plant-based meats, provide promising alternatives, yet these novel technologies face numerous hurdles in widespread global implementation. An ethical and holistic approach to medicine demands that we advocate for the health of humanity through a balanced and climate-conscious approach to diet.
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[1] Lisa, Andrew. History of America's Meat-Processing Industry. 18 Aug. 2020, https://stacker.com/stories/4402/history-americas-meat-processing-industry.
[2] Gibbons, Ann, and Matthieu Paley. “The Evolution of Diet.” National Geographic, https://www.nationalgeographic.com/foodfeatures/evolution-of-diet/.
[3] Battaglia Richi E, Baumer B, Conrad B, Darioli R, Schmid A, Keller U. Health Risks Associated with Meat Consumption: A Review of Epidemiological Studies. Int J Vitam Nutr Res. 2015;85(1-2):70-8. doi: 10.1024/0300-9831/a000224. PMID: 26780279.
[4] Chure, Griffin, et al. “Anthroponumbers.org: A Quantitative Database of Human Impacts on Planet Earth.” 2022, https://doi.org/10.1101/2022.03.04.483053.
[5] Rockström, J., Steffen, W., Noone, K. et al. A safe operating space for humanity. Nature 461, 472–475 (2009). https://doi.org/10.1038/461472a
[6] Chure, Griffin, et al. “Anthroponumbers.org: A Quantitative Database of Human Impacts on Planet Earth.” 2022, https://doi.org/10.1101/2022.03.04.483053.
[7] Kuck, G. and G. Schnitkey. "An Overview of Meat Consumption in the United States." farmdoc daily (11):76, Department of Agricultural and Consumer Economics, University of Illinois at Urbana-Champaign, May 12, 2021.
[8] Watts, Nick, et al. “The 2020 Report of The Lancet Countdown on Health and Climate Change: Responding to Converging Crises.” The Lancet, vol. 397, no. 10269, 2021, doi:10.1016/s0140-6736(20)32290-x.
[9] Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. Oxford University Press, 2009.
[10] Singer, Peter. Ethics in the Real World. Princeton University Press, 2016
Protecting the Autonomy of Patients with Severe Mental Illness Through Psychiatric Advance Directive Peer-Facilitation
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ABSTRACT
Psychiatric Advance Directives (PADs) can protect the autonomy of those living with severe mental illness (SMI) and improve their treatment outcomes. However, their uptake is low for several documented reasons. Attempts to increase patient uptake of PADs can circumvent risks of undue provider influence in the facilitation process and promote optimal mental health outcomes with a peer-support model, thereby protecting patient autonomy in accordance with the principle of beneficence. Moreover, policymakers and mental health organizations should devote sufficient resources toward establishing peer-support specialist networks to mitigate the inequities those with SMI face. Capability theory can guide state leaders and directors in justifying the distribution of scarce resources to achieve these outcomes.
INTRODUCTION
Since the mid-twentieth century, scholars have increasingly rejected a strong paternalistic relationship between physician and patient, emphasizing the right of patients to accept or decline medical treatment.[1] With this greater emphasis on patient autonomy, a healthcare model of shared decision-making ascended in the 1980s.[2] Considering limitations in a patient’s capacity to make informed decisions in their treatment, the US Congress passed the Patient Self-Determination Act in 1990.[3] The act legally obliged hospitals and other care facilities that participate in Medicare and Medicaid to ask patients if they have an advance directive. In the absence of such a directive, these institutions are to ask if patients would like to complete one and to abide by it if presented by the patient.[4]
These directives give patients control of future medical decisions in three key areas: entrusting an individual to act as a medical decision-making proxy, preferences for and consent to future treatment, and a statement of overall personal values and preferences to help inform future medical decisions by providers.[5] Although professionals initially crafted the law with end-of-life care in mind, 27 states now have mental health-specific provisions included in advance directive statutes.[6] As a subset of advance directives, psychiatric advance directives (PADs) are meant to protect patient autonomy during the treatment of psychiatric episodes when competence is compromised. Despite their promise and protection, PADs are underutilized by those with serious mental illness (SMI).
In a survey of psychiatric patients, only 4-13 percent of respondents across multiple US sites reported having completed a PAD.[7] The same study indicated that 66-77 percent of respondents were interested in completing one if given assistance.[8] Having recognized the gap between patient interest and uptake, researchers have explored the possible reasons for this disparity. Several barriers have been identified and characterized at the system, health-professional, and service-user levels.[9] Although exploring interventions targeted at each level individually may be worthwhile, several barriers may be effectively overcome with one cross-level intervention. Specifically, a network of peer-support facilitators may be able to mitigate resource concerns of the system level, provider fears, reluctance, and lack of knowledge of PADs at the health-professional level, and a lack of trust and support among those with SMI within the service-user level.[10]
Although the Patient Self-Determination Act mandated protections for patient autonomy, the law did not provide a sufficient mechanism to ensure the broad use of those protections. Much of the logistical burden falls on those living with SMI to educate themselves and initiate the completion of a PAD.[11] However, many of those living with SMI already face additional burdens that prevent their successful navigation of a complex healthcare system, including poverty, marginal housing, and food insecurity.[12] In addition, individuals with SMI tend to be more socially isolated, with few others to trust besides their providers.[13] Efforts to promote the uptake of PADs by those living with SMI that neglect these additional burdens risk exacerbating health inequities faced by those with SMI.
Attempts to increase patient uptake of PADs should circumvent risks of undue provider influence in the facilitation process and promote optimal mental health outcomes with a peer-support model, thereby protecting patient autonomy per the principle of beneficence. Additionally, policymakers and mental health organizations should devote sufficient resources toward establishing peer-support specialist networks to mitigate the inequities those with SMI face. Capability theory can guide state leaders and directors in justifying the distribution of scarce resources to achieve these outcomes.
I. System-Level Barriers to Psychiatric Advanced Directive Uptake
At least three barriers to PAD uptake exist at the system level. Still, only one can be effectively addressed by peer-support specialists: resource implications to providers and administrators.[14] In one study, 71 percent of administrators and 52 percent of clinicians believed that a shortage of time would prevent adequate facilitation of PAD completion among those with SMI.[15] Logistical difficulties, such as incorporation into routine documentation and making them easily accessible, were mentioned by 25 percent of respondents in another study.[16] Professionals should take clinical burdens seriously since they can impact care and patient outcomes. Shifting to a peer-support model would alleviate these constraints on providers, who could then focus on other aspects of patient care.
II. Health Professional-Level Barriers to Psychiatric Advance Directive Uptake
Barriers at the health-professional level, which include a lack of knowledge and training, fear of complete treatment refusals, and a reluctance to facilitate PAD creation, keep patient uptake of PADs low.[17] Among these barriers is a need for more knowledge and training among healthcare professionals. In one study, 55 percent of health professionals had never heard of PADs; only 11 percent claimed they were "very familiar" with PADs.[18] In a survey of professionals, 45 percent voiced concern that the potential disadvantages such as the use of PADs to refuse medications could outweigh the benefits.[19] The reluctance of providers to assist service users in completing a PAD stemmed from concerns over time constraints and the providers’ ability to facilitate the completion of a PAD without bias.[20] These concerns are serious and hint at the asymmetrical power dynamic between providers and patients. By removing the responsibility of unbiased communication from the provider and placing it with peer-support facilitators, the risk to patient autonomy would be significantly lessened.
III. Service User-Level Barriers to Psychiatric Advance Directive Uptake
Several barriers exist at the service-user level that prevent the widespread adoption of PADs. These include a lack of trust, support, and knowledge of PADs, as well as a lack of understanding in completing a PAD.[21] Concerning trust, one study found that 43 percent of patients did not feel they had someone they could trust to help them complete their PAD.[22] Other studies indicated that patients had limited trust in their healthcare professionals.[23] Regarding the lack of support, one survey found that 94 percent of respondents would be unable to complete a PAD without assistance or without a facilitator.[24] Many patients lack knowledge and awareness of PADs, how to complete, and what to include in them.[25] Due to their complex legal nature, over half of the respondents in one survey indicated that they had problems understanding the PAD.[26] Similarly, 79 percent of clients interviewed in one study felt that PADs posed too much of a burden.[27] Through their shared lived experience, peer-support facilitators would be in a greater position to foster trust with patients and create the environment necessary for patients to explore their values and preferences through this process.
IV. Circumventing Undue Provider Influence on Patient Autonomy
The risk to patient autonomy is pervasive because of the advanced nature of medical practice and the dependence of patients to providers. In their delineation of bioethical principles, Beauchamp and Childress state: "To respect autonomous agents is to acknowledge their right to hold views, to make choices, and to take actions based on their values and beliefs."[28] This duty extends through a respectful attitude toward the patient and respectful action toward the patient.[29] On average, patients with SMI take 14.6 minutes to complete a PAD, which is well within the 30-minute time limit imposed by insurance reimbursement schedules.[30] However, as other researchers have indicated, this time of completion does not take into account the time required to inform and discuss the implications of future treatment decisions adequately.[31] Given that those living with SMI are often affected by cognitive deficits, the ability of a provider to relay complex health and legal information promptly may be further hamstrung.[32] By offloading the burden of providing efficient and practical education to patients with various levels of cognitive impairment, peer-support specialists could provide the necessary space and time to obtain informed consent and protect patient autonomy.
Much of the moral force behind advance directives is the respect for patient autonomy, which has been a focus of researchers over the past several years.[33] Because psychiatric episodes severely limit the ability of a patient to make well-informed treatment decisions in a crisis, PADs are a way to protect the patient from paternalistic interventions. This takes on greater weight in treating patients experiencing a psychiatric episode when the threat and use of coercive treatment options are frequent.[34] Moreover, a report in North Carolina has uncovered a "culture of commitment" whereby providers routinely and reflexively override patient PADs through the legal execution of involuntary commitment.[35] This is despite the affirmation of the autonomy of psychiatric patients by the US District Court in Vermont, which concluded in Hargrave v. Vermont that clinicians could not overrule written directives regarding mental health treatment in non-emergency situations.[36] Although the invalidation of a PAD occurs during treatment, well after discussing and creating it, providers holding the view that PADs are of little utility may not accurately or effectively discuss their relevant features with patients. However, this issue could be side-stepped entirely with peer-support specialists who would be responsible for obtaining informed consent from the patient within the value structures espoused by the patient.
V. Beneficence Through Peer Support
A growing amount of research indicates how peer-support facilitation of PADs can improve the mental health outcomes of those with SMI. Studies show that adults with SMI can complete legally valid PADs with appropriate assistance and that these documents faithfully represent their preferences.[37] At a minimum, service users report no bias against peer specialists in facilitating PADs.[38] Peer-support specialists use their lived experience to foster empowerment among patients, serve as role models, and promote a patient-centered process in successful PAD completion.[39] Mitigating concerns from providers that PAD creation would include complete refusal of treatment, other studies have found that peer-facilitated PADs were significantly more likely to be prescriptive than PADs facilitated by non-peer clinicians.[40] Most importantly, peer-facilitated PADs effectively decrease compulsory hospital admissions and increase mental health outcomes such as self-perceived symptoms, empowerment, and recovery.[41]
Providers have a prima facie duty to prevent harm from occurring to others, remove conditions that will cause harm to others, and help persons with disabilities.[42] This is often conceptualized within the patient-provider relationship, but it need not be. Although general beneficence is controversial in ethics circles, providers can promote the welfare of those they may never meet by relinquishing the responsibility of PAD facilitation to peer-support specialists.[43] In doing so, they remove the possibility of unduly influencing patient preferences, thereby reducing the risk of harm. Additionally, providers incur no additional costs, ameliorating concerns that they do not have the time or resources to facilitate PAD creation effectively.[44] Additionally, they would be implicitly endorsing a better treatment option, allowing them to meet the prima facie obligation to help persons with disabilities.
VI. Relational Autonomy and Informed Consent in PAD Creation
Shifting the burden of PAD facilitation from providers to peer-support specialists may not settle questions of undue influence. However, under their own SMI, peer-support specialists have lived experiences that strongly parallel others with SMI, which may augment patient autonomy overall. In support of this relational turn, Susan H. Williams explains: "Once the social sources of our identities are recognized, it becomes apparent that someone else who shares my culture [experience] might be able to understand me better than I understand myself.” [45] Essentially, the lived experience of peer-support specialists does not necessarily impede autonomy but can effectively enhance it through facilitated support.[46] Recognizing that individuals are embedded in social relations makes it clear that conceptions of autonomy that neglect emotions, communal life, social context, interdependence, reciprocity, and the development of persons over time are exceedingly narrow.[47] Within this framework of relational autonomy, peer-support specialists can guide service users through their struggles with SMI. So long as the interaction allows service users to act intentionally, with understanding, and without external influences, professionals can respect an individual's autonomy.[48] The enhancement in service-user autonomy ultimately arises from the relationship and shared experience with the peer-support specialist.
Of course, peer-support specialists would be obligated to the affirmative duties necessary to ensure service users' understanding and informed consent. Peer-support specialists can achieve informed consent through a certification procedure and a manualized structured conversation that guides the patient to understand their preferences better.[49] To achieve informed consent, "the patient must have the capacity to be able to understand and assess the information given, communicate their choices, and understand the consequences of their decision.”[50] To this end, professionals must train peer-support specialists to apply standards of competence to service users prior to PAD facilitation. Although intervening with peer-support specialists can yield substantial benefits—including fewer coercive interventions, a better-working alliance with care providers, and higher odds that individuals will receive and adhere to their preferred medications— professionals must reach informed consent during each facilitation session.[51]
VII. Guiding Distributive Justice: Capability Theory
Capability theory is an account of justice opportunity that places a fundamental moral significance on individuals' ability to reach proper functioning and well-being.[52] Whether or not an individual can make use of a particular set of resources and convert them into a state of functioning depends on personal, sociopolitical, and environmental conditions ("conversion factors").[53] In this sense, liberty is not the absence of restraint from others or institutions but the freedom achieved through capability-enhancing relationships.[54] Within the context of bioethics, capability theory shifts focus toward creating circumstances by which individuals can direct their lives as they choose.[55] Acting in accordance with the principle of beneficence, peer-support specialists could enhance the capability of patients to be self-determined and autonomous, which would promote patient well-being and empowerment.[56]
Those living with SMI, such as schizophrenia and bipolar disorder, are among the most disadvantaged in society, experiencing social and economic hardship related to their illness.[57] These individuals are often feared and rejected by others, which increases depression, lowers self-esteem, and engenders feelings of social isolation.[58] Compounding their challenges, especially for those facing structural inequalities, is insufficient access to appropriate mental health services supporting recovery.[59] Capability theory provides a sound justification for the resource distribution necessary to create and sustain a thriving network of peer-support specialists, to which those with SMI currently do not have access. Establishing this conversion factor would increase the uptake of PADs and motivate continued engagement in treatment, which is crucial for patients with SMI.[60]
Governments and private and public mental healthcare organizations should prioritize establishing peer-support facilitator networks to provide those living with SMI with this much-needed resource. Funding should be directed to train peer-support specialists so that available treatment options are clearly communicated and informed consent is achieved. NAMI Peer-to-Peer and Integral Care (Travis County) Peer Support Specialists may provide effective support models. However, policymakers should take note of Virginia's facilitation model implementation efforts and consider potential roadblocks at the state and local levels.[61] Additionally, investment should be made into a nationwide PAD repository that providers can access electronically during intake so that patient preferences are respected throughout treatment.
CONCLUSION
Those living with severe mental illness experience disproportional disadvantages that limit their ability to access mental health resources that protect their autonomy during a crisis. These disadvantages should be acknowledged and addressed with the creation and sufficient funding of peer-support specialist networks to help these individuals complete and execute psychiatric advance directives during treatment. Efforts that attempt to promote psychiatric advance directive facilitation through providers risk undue influence and poor mental health outcomes, despite the duties of non-maleficence and beneficence. While different models may be explored, peer-support specialists can leverage the advantages of their shared lived experience with patients within a framework of relational autonomy following the principle of beneficence. Capability theory offers state, local, and organizational leaders’ guidance in promoting and justifying peer-support specialist networks, which protect patient autonomy, increase well-being, and decrease harm.
PERSONAL PERSPECTIVE
As someone who has voluntarily been admitted to a psychiatric health facility twice to treat manic episodes stemming from Bipolar I Disorder, I recognize the autonomy-persevering utility of psychiatric advance directives on a theoretical and experiential level. Through my research and the benefit of hindsight, I believe that a psychiatric advance directive could have facilitated my treatment regimens and perhaps mitigated some of the depersonalization and lack of control I felt. This experience informs my approach and contribution to the academic conversation surrounding the systematic barriers and ethical dilemmas preventing the widespread use of psychiatric advance directives.
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[1] Madison K. Kilbride and Steven Joffe, "The New Age of Patient Autonomy," JAMA 320, no. 19 (2018): 1973-1974, https://doi.org/10.1001/jama.2018.14382.
[2] Kilbride and Joffe, "The New Age of Patient," 1973-1974.
[3] Patient Self-Determination Act, H.R. Res. 5067, 101st Cong. (Nov. 5, 1990) (enacted).
[4] Billy Table, Jaime Thomas, and Virginia A. Brown, "Psychiatric Advance Directives as an Ethical Communication Tool: An Analysis of Definitions," The Journal of Clinical Ethics 31, no. 3 (2020): [353-363]
[5] Heather Murray and Hal S. Wortzel, "Psychiatric Advance Directives: Origins, Benefits, Challenges, and Future Directions," Journal of Psychiatric Practice 25, no. 4 (2019): 303-307, https://doi.org/10.1097/PRA.0000000000000401.
[6] Table, Thomas, and Brown, "Psychiatric Advance," 353-363.
[7] J. Swanson et al., "Psychiatric Advance Directives among Public Mental Health Consumers in Five U.S. Cities: Prevalence, Demand, and Correlates.," The Journal of the American Academy of Psychiatry and the Law 34, no. 1 (2006): 43-57.
[8] Swanson et al., "Psychiatric Advance," 43-57.
[9] Laura S. Shields et al., "A Review of Barriers to Using Psychiatric Advance Directives in Clinical Practice," Administration and Policy in Mental Health and Mental Health Services Research 41, no. 6 (2013): 753-766, https://doi.org/10.1007/s10488-013-0523-3.
[10] Charles M. Belden et al., "Appropriateness of Psychiatric Advance Directives Facilitated by Peer Support Specialists and Clinicians on Assertive Community Treatment Teams," Journal of Mental Health 31, no. 2 (2021): 239-245, https://doi.org/10.1080/09638237.2021.1952946.; Shields et al., "A Review," 753-766.
[11] Tracy Peto et al., "Support Needed to Create Psychiatric Advance Directives," Administration and Policy in Mental Health 31, no. 5 (2004): 409-419, http://ezproxy.lib.utexas.edu/login?url=https://www.proquest.com/scholarly-journals/support-needed-create-psychiatric-advance/docvie
Have Arguments For and Against Medical Aid in Dying Stood the Test of Time?
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ABSTRACT
It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon, and today, about 20 percent of people in the US live in jurisdictions that permit MAiD. The New York State legislature is currently considering a bill that would permit Medical Aid in Dying for terminally ill patients in certain defined circumstances. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions. This demonstrates that legislation can simultaneously grant terminally ill citizens the civil right to access MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. Given the copious evidence gathered in the past decades, concerns about abuse can no longer be credited as grounds for opposing the passage of legislation that is demonstrably both effective and safe.
INTRODUCTION
It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon,[1] and today, about 20 percent of people in the US live in jurisdictions that permit MAiD.[2] Other jurisdictions, including New York, are actively considering adopting MAiD laws. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions, demonstrating that legislation can permit MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. The data should allay the concerns of those who oppose MAiD due to the risk of abuse, coercion, and a hypothetical slippery slope. We, as a society, as clinicians, and as ethicists, must remain vigilant and prevent abuse of MAiD, given the potential risks in the community and in congregate care settings and the risk of patient exploitation by family members. However, given the copious evidence, concerns about abuse do not justify opposition to legislation that is effective and safe.
I. New York’s MAiD Bill
The New York State legislature is currently considering a bill that would permit MAiD for terminally ill patients in defined circumstances.[3] The bill applies only to adults with a terminal illness or condition that is “incurable and irreversible” and “will, within reasonable medical judgment, produce death within six months.” The bill contains numerous protective requirements:
MAiD requests can only be made by the patient themself; requests cannot be made by healthcare agents, surrogates, or anyone else;
MAiD requests must be made both orally and in writing to the patient’s attending physician;
No person is eligible for MAiD solely because of age or disability;
The patient’s attending physician must determine the patient has a qualifying terminal illness, has decision-making capacity, and has made a voluntary, informed decision to request MAiD, in the absence of coercion;
These determinations must be confirmed by a second consulting physician in writing;
If the attending physician has any concern that the patient may not have decision-making capacity, the patient must be referred to a mental health professional;
The attending physician has additional duties to the patient, including ensuring the decision is informed, by discussing the patient’s condition and prognosis; discussing the MAiD process, and treatment alternatives like palliative and hospice care; offering referrals to other appropriate treatment, like palliative and hospice care; and educating the patient that their request can be rescinded at any time and offering them an opportunity to do so;
The written request must be witnessed by at least two adults who cannot be (i) related to the patient, (ii) entitled to any portion of the patient’s estate, (iii) employed by a healthcare facility where the patient is receiving treatment or residing, (iv) or the attending physician, consulting physician, or mental health professional determining decision-making capacity; and
MAiD medication must be self-administered by the patient, and it must be voluntarily ingested.[4]
ARGUMENTS FOR AND AGAINST MAiD
II. No Evidence of Abuse of Existing MAiD Laws
MAiD supporters and critics alike have a concern about the abuse of MAiD. For this reason, MAiD laws throughout the US incorporate strict eligibility criteria and protective procedural requirements. For instance, patients are eligible only if they are terminally ill with six months or less to live, more than one physician must be involved, and requests must be witnessed (by individuals unrelated to the patient who will not profit from the patient’s estate). MAiD requests have been closely examined in the 27 years since Oregon became the first state to legalize the practice. The results show that these compassionate and protective measures have worked.
There have been no documented or substantiated incidents of MAiD abuse since Oregon became the first to implement a MAiD law in 1997.[5] In 2019, the executive director of Disability Rights Oregon (DRO), an organization mandated by federal law to investigate complaints of abuse or neglect of people with disabilities, reported that DRO has never received a complaint that a person with disabilities was coerced into obtaining a prescription for MAiD drugs.[6]
A recent study of aggregated data from all nine of the US jurisdictions with publicly available MAiD records from 1998 to 2002 found that 95.6 percent of those who died by MAiD were non-Hispanic white individuals, and 53.1 percent were male.[7] 72.2 percent of these individuals had at least some college education, 74 percent had a cancer diagnosis, and the median age of MAiD death was 74 years old. Only 11 percent of patients were uninsured. MAiD users tend to be white, older, educated, diagnosed with cancer, and insured. Fears that MAiD would overwhelmingly be used by (or on) the poor, the uninsured, the uneducated, or racial and ethnic minorities have not materialized. This data has actually raised a converse concern: that MAiD may, inequitably, not be readily available to less privileged populations or those with a diagnosis other than cancer.[8]
Opponents of MAiD may argue that the recent relaxation of certain legal restrictions in some jurisdictions is evidence that the slippery slope to unrestricted euthanasia has begun. This is a mischaracterization. Certain restrictions have been adjusted. For instance, Oregon and Vermont removed the residency restriction that previously excluded non-residents from eligibility.[9] Both states changed the residency requirement due to lawsuits challenging the constitutionality of requiring residence.[10] New Jersey’s law will likely change soon, as well.[11] Initial MAiD laws were drafted to be highly restrictive out of concern about unintended and unforeseeable consequences. Given the gravity of the subject, decades ago, it was better to err on the side of caution, even if that meant excluding from eligibility people who ought to, ethically or legally, be included. Now, with nearly 30 years of experience and data, we can better determine which requirements are necessary to appropriately protect patients, clinicians, and society. Restrictions proven to be unnecessary can now be modified. The core purposes of MAiD laws and the rights and protections they provide are not changing. Rather, a few aspects of the regulations are being adjusted so they are not more restrictive than necessary to achieve their purpose.
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.[12] For example, NYU bioethicist Arthur Caplan was once a vigorous opponent of MAiD. He worried that MAiD laws would lead to the abuse of the poor, uninsured, and disabled in service of cost-saving or the convenience of others. [13] But, after closely following the empirical evidence from MAiD early-adopters, Oregon and Washington, Caplan changed his mind. In 2018, he argued in favor of the NY MAiD bill before the New York State Assembly Standing Committee on Health.[14] Discussing his review of evidence from these states, Caplan stated:
I found no cause for my concerns, none with respect to the slippery slope. There isn’t solid evidence of coercion or duplicity being exercised with respect to people who choose assistance in dying in either state. The police, government officials, families of those who have chosen to use the legislation and the general citizenry find no causes or basis for changing the laws due to abuse or misapplication . . . These slippery slope arguments are just not true . . . there is no current factual support for this slippery slope argument that vulnerable individuals are at risk for being coerced into using the law.[15]
Decades of evidence has shown that legislation can simultaneously grant terminally ill patients access to MAiD while also protecting against coercion and abuse. In the face of this evidence, continuing to deny access to MAiD because of hypothetical abuse is unjust and unethical.
III. Views of Opponents are Neither Grounded in Fact nor Consistent with Current End-of-Life Practices
a. Risk of coercion
One common argument heard today from some disability advocates who oppose MAiD goes something like this: Everybody who would qualify for and use MAiD is (or will become) a disabled person, so MAiD only kills people with disabilities. The most common reasons people choose to end their lives via MAiD are disability issues, like loss of autonomy, less ability to engage in activities, and loss of dignity. They argue that, instead of making it easier for disabled people to die, we should make sure that proper services and support exist so that disabled people do not choose to die. Such disability-rights-based arguments tend to assert that to avoid abuse, we must prohibit MAiD altogether.
They argue that legalizing MAiD will inexorably lead to abuse and coercion, and disabled people will be pressured into suicide. Some even argue that MAiD laws are the first step to euthanasia, noting the path in other jurisdictions.[16]
As an initial matter, people with disabilities deserve adequate support and services, and these are not always available to them. People with disabilities have faced tremendous discrimination in the healthcare system and have been historically prevented from accessing proper care and asserting their autonomy. Ensuring that all can access adequate end-of-life care, like palliative or hospice care, is an ongoing battle that ought not be abandoned. But fighting for adequate end-of-life care and legalizing MAiD are not mutually exclusive. In Oregon, 90 percent of those who access MAiD are enrolled in hospice and states with MAiD laws tend to have better access to palliative care than states without.[17] MAiD proponents seek only to add another choice for the dying, not to diminish any other options. This is reflected in the text of New York’s pending bill, which explicitly requires patient education and referrals to appropriate end-of-life services, like palliative care and hospice.[18] No one has openly argued that society should hold terminally ill patients hostage in order to obtain broader support and funding for palliative care, but that is the practical effect.
Beyond the need for supportive services and proper access to the full range of end-of-life care options, the disability argument fails. First, the assertion that MAiD laws will be abused and disabled people will be coerced into suicide is not grounded in fact. To the contrary, real-life evidence gathered in over two decades of legal MAiD has shown no documented or substantiated incidents of abuse, as discussed above.[19] The slippery slope has simply not materialized.
Advocates for people with disabilities who are opposed to MAiD have not clearly articulated exactly who is vulnerable to being coerced into obtaining a MAiD prescription or even how such coercion could logistically occur. Most people with disabilities are not vulnerable to MAiD abuse, as they do not have a qualifying terminal illness or lack decisional capacity due to a developmental disability and are therefore not eligible.
MAiD opponents appear to be claiming that all those who qualify for MAiD are vulnerable and seek protection from MAiD laws. But this would include many of the people that, over the past decades, have aggressively and publicly advocated for access to MAiD – terminally ill people, like Brittany Maynard,[20] many of whom lobbied hard for the passage of MAiD laws while knowing that they themselves would die before the laws passed. Opponents of MAiD from a segment of the disability rights community are telling individuals who they claim, without permission, as members of the MAiD opposition community, that they must all endure unimaginable suffering without a MAiD option because they must be protected from theoretical coercive harm. People with disabilities should be allowed to make their own choices. No one, not even the most well-meaning advocate, should be allowed to obstruct a patient’s end-of-life choices – those choices belong to the patient alone.
b. Argument That the Demand for MAID is a Result of Poor Disability Services
Second, the argument that terminally ill patients would decline MAiD if only they had better disability services or support is disingenuous to the extent that it ignores the fact that people choosing MAiD are actively dying. No provision of supportive services can change this. And it is perfectly reasonable for someone who knows that they will die in less than six months to want some control over the manner of their death and to avoid the deterioration, indignity, and suffering that could come with it. The argument construes a MAiD death as a choice to die rather than live with a disability. But individuals choosing MAiD are not choosing death – death is coming and coming quickly. MAiD simply offers some control over this reality, giving patients an option that is safe, certain, and painless. Certainly, supportive hospice services should be available for these individuals. But there is no evidence demonstrating that any amount of service would eliminate the need and desire for the MAiD option.
c. Inconsistent Positions on MAID and Other Ending Life Care Options: Palliative Sedation and VSED
MAiD opponents who are concerned about abuse and coercion often hold inconsistent views on other currently available ending life care options.[21] For example, some argue that palliative sedation[22] renders MAiD unnecessary and does not present the same ethical problems.[23] However, whereas MAiD can only be chosen by the patient themself (and the patient must have decision-making capacity), the same is not true for palliative sedation. Palliative sedation, a valuable modality of end-of-life care, does not have to be initiated by the patient. If the patient is deemed not to have decision-making capacity to make that decision, their healthcare proxy can decide to initiate the process and continue it until the patient dies. Individuals other than patients often choose to begin palliative sedation and continue it to its inevitable conclusion. And because palliative sedation does not require enabling legislation, none of the protective safeguards incorporated in MAiD legislation are available to protect those who receive palliative sedation.
Some may try to differentiate between palliative sedation and MAiD by saying that once started, palliative sedation can always be discontinued – it need not end in the patient’s death. This is true, but the very process of palliative sedation will inevitably make the patient insensible or unconscious or otherwise unable to exercise a choice to stop sedation. With MAiD, the patient must self-administer and ingest the medication on their own, with death following quickly. The patient can choose to forgo MAID up until the very moment of self-administration. Considering MAiD’s procedural safeguards, including that only the patient may choose and administer MAiD, MAiD patients are offered more protection from potential abuse than patients who receive palliative sedation.
While some have vocally opposed MAiD for decades, there has not been similar opposition to the option of voluntarily stopping eating and drinking (VSED). With VSED, adults with decision-making capacity make a voluntary decision to refuse nutrition and hydration to die more quickly. People choosing VSED are, essentially, making the same choice that people choosing MAiD do. But VSED is a less predictable process that takes much longer to complete. Unfortunately, the process also carries a risk of unpleasant side-effects, though proper care can help mitigate them. Additionally, the practice of VSED is not constrained by statutorily defined protective measures, as is the case with MAiD – one does not even need to have a terminal illness to choose VSED.[24]
It is logically inconsistent for those who oppose MAiD because of the perceived potential of abuse to hold different views about VSED.[25] If malevolent actors can unethically pressure or coerce patients into MAiD, they can also coerce them to stop eating and drinking. As with palliative sedation, it could be argued that an important difference is that VSED can be stopped, unlike MAiD. This argument fails clinically and ethically. As with palliative sedation, the VSED process eventually results in the patient losing consciousness and decision-making capacity. The patient generally becomes unarousable for a period that could last for days or even weeks. For this reason, it is crucial for VSED patients to express their choice in writing (or preferably in video recording)[26] to ensure that they will not be given nutrition or hydration when they are no longer able to enforce their refusal (or if they begin asking for nutrition or hydration). Therefore, there is a period in which the patient cannot decide to end the process, just as with palliative sedation. To the extent that someone is so concerned with potential abuse of MAiD that they seek to ban it but have not expressed similar concerns with VSED, these positions are inconsistent.
At a NYS Bar Association-sponsored conference on MAiD in 2019, David Hoffman asked a MAiD opponent whether, “as someone who is looking out for the interests of a segment of the disability population,” she supports palliative sedation and VSED.”[27] Kathryn Carroll, who represented the Center for Disability Rights (“CDR”), confirmed that CDR did not oppose palliative sedation and did not offer a position on VSED. She noted the subtle difference in intention:
I don’t believe the Center for Disability Rights has taken issue with palliative sedation. And my understanding is that there is a key difference between palliative sedation and assisted suicide, particularly in that palliative sedation, the point is not to bring about the death of the person, but to relieve the pain that they are experiencing. And so the death is more of a side effect rather than the intended outcome.[28]
During the questioning, she provided no explanation as to why the potential for abuse would be different among palliative sedation, VSED, and MAiD.[29]
The other MAiD opponent on the panel, Dennis Vacco, of Vacco v. Quill[30] fame, interjected but could not explain any ethically significant difference between VSED and MAiD. Instead, he focused solely on palliative sedation, stating that the relevant difference is that palliative sedation can be stopped:
. . . treating the pain including what you referred to as terminal sedation, is not moral and legally and ethnically the same as physician-assisted suicide . . . The fact of the matter is – the difference is you can terminate that treatment, and it’s the permanent aspect of physician-assisted suicide that goes back to what I said 20 minutes ago. You can’t put the bright line anyplace else other than where it is.[31]
But, as discussed above, that difference is of little import, given that palliative sedation results in patients without the ability or capacity to make the choice to stop treatment. Vacco then reverted to his concerns about the potential for coercion and the elusive slippery slope, referencing his primary argument that the only way to ensure there is no abuse of a MAiD law is not to have one at all:
The bright line that is created by the law in the state of New York, which makes physician-assisted suicide a manslaughter in the second-degree, or assisting suicide by anybody, manslaughter in the second degree . . . is unfortunately the only place that line can be. That line should not move further toward accommodation. And we see here in the context of . . . all of the so-called protections in the statute. With every protection that is not prohibition, with every protection, you raise the possibility of abuse. You raise the possibility with every protection.[32]
Neither Vacco nor Carroll addressed the fact that many common practices today can be the result of coerced decisions. These practices have none of the safeguards contained in MAiD legislation. As another panelist, David Leven, stated:
consider that people who want to have life-sustaining treatment withdrawn, whether it’s a ventilator or feeding tube, they can also be coerced by family members. That can happen even more often, of course, because that process takes place more and more often, and there are none of the safeguards that we’re talking about here . . . there are risks involved in any process which might result in a hastened death. But there seems to be very little risk involved with medical aid in dying based on the experience in 40 years and the nine states which now permit medical aid in dying.[33]
There is an inescapable inconsistency within the disability argument
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