Bioethics Forum Essay

Legal Medical Aid in Dying: The Paradox of Privacy

Are medical aid-in-dying deaths natural? New York seems to think so. Consistent with other jurisdictions in the United States, New York’s Medical Aid in Dying Bill determines that on the death certificate, the manner of death will be listed as natural, and the terminal condition that established the person’s eligibility for assisted dying will be recorded as the cause of death, for example, metastatic cancer. Regardless of one’s position on the legalization of assisted dying, how these deaths are documented on death certificates raises important ethical questions about vital statistics and individual privacy. 

These categorization decisions are not issues of semantics or ideology. Instead, they stem from an implicit acknowledgment of the social anxieties about certain forms of dying. There is an inherent and widespread paradox here, which the bioethics community has largely overlooked. On one hand, if a person dies from a socially problematic or value-laden condition or method, accurately recording this could be viewed as the final, bureaucratic mark of stigma. On the other hand, a distorted or sanitized report diminishes the integrity of the decedent’s memory and the factual details of their life. As Carl Ohman points out, the “written word, like the grave, is a kind of container wherein the dead reside and remain fixed over time.” Why are those who choose assisted dying provided with an extra layer of legal protection for their privacy that is not afforded to those dying by, say, suicide or HIV/AIDS—circumstances and conditions considered by some as socially stigmatizing? 

One could argue, what does it matter? But death certificates are important legal records that help to conclude aspects of a person’s life, such as settling insurance claims, administering inheritances, and closing bank accounts. They are also critical data sources for national mortality statistics, which can inform resource allocation. In the U.S., the certificate includes relevant biographical information and the immediate cause of death, which may list underlying and contributing factors, as well as the manner of death. The information is usually verified by the attending physician or medical examiner. Cause and manner of death distinctions serve separate but complementary purposes. The cause of death refers to the clinical sequence of events that directly leads to death, such as acute respiratory distress syndrome or renal failure. The manner of death, however, reports the circumstances of the death, categorized in one of five ways: natural, accident, homicide, suicide, or undetermined.

Opinions vary as to the importance of explicit determinations of death, and a persistent overstating of generic cardiac arrest is featured in much of the analysis. Some physicians also describe direct and indirect emotional pressure from families to modify their language, where the nature of the death may impose additional psychological burdens. Such distortions, however, have consequences.

Errors on death certificates can be procedurally complicated, emotionally draining, and costly to fix. To safeguard sensitive information, some jurisdictions only accept requests for amendments from the next of kin, introducing additional obstacles. Historically, certain diseases and ways of dying produced material consequences, including denying funeral care to HIV/AIDS patients or invalidating insurance claims after suicide. More recently, socio-political interests intensified around both public health practices and the memorialization of personal loss during the Covid-19 pandemic, fueling ongoing debates about whether (and why) the number of deaths caused by the virus was either overcounted or undercounted. 

New York’s bill mandates that death recordings “shall not constitute a public record available for public inspection and shall be confidential and collected and maintained in a manner that protects the privacy of the patient, the patient’s family, and any healthcare provider acting in connection with the patient.” This provision implicitly establishes a moral hierarchy of death, reflecting Erving Goffman’s foundational work on stigma as the discrediting traits that diminish a person’s intrinsic value. Interestingly, under this law, the protection against the mark of stigma extends in three directions: preserving the privacy of the patient, those who mourn them, and the facilitating clinician. Perhaps the bereaved feel socially compelled to disclose the private pain (or ease) of their loved one’s end-of-life decisions, or the patient feels obliged to justify their merciless “battle” with illness, playing into the totalizing fighter narrative that valorizes some deaths over others. Experiences of postmortem shame, such as unworthiness or societal judgment tied to certain types of deaths, are woven into the person’s demise and, consequently, their memory.

Of equal importance, how will the legislatively imposed suggestion of secrecy affect those who may have proudly exercised their sense of self-determination to utilize MAID? Consider, for example, family members who wrestled with questions of disclosure when crafting their loved one’s obituary. Or, Professor Felicia Huppert in Australia, whose son openly shared their family’s heartbreaking and yet positive experience of assisted dying as part of the parliamentary process for proposed change in England and Wales.

From a public health perspective, a thorough review of death certificates could help to determine which medical and biographical details are necessary and for what reasons. A responsible recording practice should be based on objective, fact-based inquiry rather than being molded by cultural moralizing. Local and national public health authorities can track epidemiological trends and enforce compliance with relevant laws without creating a safeguard that prioritizes the privacy of MAID users and providers over others. An updated approach to death certificates will help the U.S. align with calls for improved international standards that focus on accurate data collection and respect for individual stories, as well as accommodating shifting social attitudes toward death, privacy, and collective memory. 

One could also ask whether, in a world where personal data is increasingly vulnerable to misuse, personal choices about end-of-life care and related medical conditions are truly necessary for the administrative functions of a death certificate. While maintaining statistical accuracy at the public and population level is vital, so are concerns about posthumous harms to the deceased and their families caused by persistent stigma surrounding death.

Dying is more than a biological event; it represents an irreversible loss that can be widely felt. The debate over assisted dying often centers on the concept of dignity. However, dignity at the end of life is more complex and socially nuanced than simply questioning the circumstances of dying. It also relates to legacy. Death certificates arguably memorialize the shame and stigma tied to deaths viewed by some as socially problematic by reinforcing established moral hierarchies of acceptable causes and circumstances. As practices evolve to allow for direct interventions to hasten death, some policymakers argue that, under the guise of personal and professional privacy, people who use MAID should be protected from potential moral judgment about their grief or choices.

But doesn’t this create the same paradox—that hiding stigma only perpetuates stigma? Without considering postmortem privacy sui generis, certain diagnoses or modes of dying recorded on death certificates can rigidly shape how people are remembered. Ultimately, some death certificates will pass through families and history as potentially inaccurate, sanitized artifacts of shame. The legacy of those who have died deserves something more genuine, remembered in sensitive, responsibly recorded facts that address the needs of both public health and personal loss. 

Johnna P. Wellesley, PhD, is a clinical ethics fellow at Weill Cornell Medicine in New York. LinkedIn JohnnaWellesley

Acknowledgements: I am indebted to Dr. Joseph Fins for his wise and generous feedback.