Editors’ Note: In a March 2015 report, the Centers for Disease Control and Prevention noted a dramatic increase in heroin use and heroin-overdose deaths; the number of deaths from heroin overdose nearly tripled from 2010 to 2013, with deaths since 2000 highest among those ages 25 to 44.
Many people believe that the societal shame associated with heroin addiction prevents grieving families from discussing their loved ones’ cause of death openly—and, more importantly, dissuades individuals who use or are addicted to heroin from seeking the help they need. A provocative New York Times article recently explored the issue. In it, families and even some deceased heroin users explained why they listed heroin addiction as the cause of death in the obituaries. One deceased heroin user even wrote her obituary in advance, detailing her harrowing path of descent.
The practice raises a number of privacy and ethical issues, yet it does have supporters. We spoke with two Einstein and Montefiore addiction experts, a noted Einstein bioethicist and a former heroin user in long-term recovery for their reactions.
The Former Heroin User in Long-Term Recovery
Junior Alcantara, age 37, featured in the award-winning film The Fix, treated at the Montefiore-Einstein Division of Substance Abuse
[On Disclosing Addiction:]
There’s a lot to it, you know. If it’s not said, then it’s not going to be talked about. But you have to have the talk because people think that this is a moral dilemma and it’s not moral, it is a brain disorder, You know what I mean? This is something that has to be addressed. People are not considering that this is actually a disease.
Right now, it’s the big stigma behind drug addiction. And you don’t want to be known as the one who died of an overdose. But sometimes that is what is going to get people talking. And that’s what brings funding, unfortunately, to our cause.
This is something that should be talked about and not hidden because it’s going to happen. There’s a really big possibility that this is going to happen, so are you going to keep being part of the problem or are you finally going to be part of the solution?
The Physician-Researcher Specializing in Addiction
Chinazo Cunningham, M.D., M.S., professor of medicine at Albert Einstein College of Medicine and associate chief of the division of general internal medicine at Montefiore Health System
Over the past decade, prescription-opioid use has dramatically increased. In response to this trend, many policies and pieces of legislation have evolved with the goal of reducing the amount of opioids prescribed. Examples of policies include legislation that prohibits prescribing high-dose opioids, guidelines recommending that emergency room providers prescribe only up to three days of opioids and insurance companies requiring prior authorization for certain opioids. While these policies may help to curb the prescription-opioid epidemic, a big concern is that people who were receiving prescription opioids are no longer receiving them, and they are turning to heroin instead. Heroin may be easier to get and cheaper.
Data in NYC support this notion of people transitioning from prescription opioids to heroin, as just recently, prescription-opioid use has decreased while heroin use continues to increase. In addition, while opioid use in general continues to increase, the number of people receiving treatment for opioid-use disorders is only minimally increasing and not keeping up with the number of people needing treatment.
There are many reasons why people don’t seek treatment—access to methadone hasn’t changed in decades, access to buprenorphine is limited and often people are unaware of this treatment option altogether. Insurance companies can also pose barriers to opioid-addiction treatment and there is a significant stigma associated with addiction. The use of heroin and the lack of treatment put people at risk for much harm, including infections such as viral hepatitis and HIV, incarceration and overdose.
The Addiction Treatment Center Director
Sarah Church, Ph.D., executive director, Montefiore Division of Substance Abuse; assistant professor of psychiatry and behavioral sciences at Albert Einstein College of Medicine
In my opinion, this is a positive trend; we often tell our patients that having a substance-use disorder is similar to having a chronic disease such as diabetes, but people still have difficulty making that connection. Since the cause of death for other diseases is often listed in obituaries, I think it is normalizing to also list addiction, if that was the cause of death.
The more that people equate substance-use disorders with other medical disorders, the more we can reduce the stigma associated with addiction.
Ruth Macklin, Ph.D., professor of epidemiology & population health at Albert Einstein College of Medicine
Mentioning in an obituary that the cause of death was a drug overdose is controversial. It prompts the question whether a person’s privacy can be invaded after death.
According to one view, dead persons no longer have interests; therefore, they cannot be wronged or harmed. An opposing view maintains that while still alive, people have interests in how they will be remembered when they are gone—typically as kind, generous and thoughtful rather than mean, selfish and stubborn. So it is respect for the persons they once were that should dictate what is included in an obituary.
The problem is, most people do not make known what they would or would not want their obituaries to include or omit. If such evidence does exist, family members should honor the wishes of the deceased, just as they may be called upon to say what a patient who has lost capacity would want by way of treatment if there is no chance of recovering decisional capacity.
When patients lack an advance directive, such as a living will, relatives are asked to provide “substituted judgment” based on what they know of the individual’s beliefs and values. If an addicted person was ashamed of his or her addiction, sought to hide it from friends and acquaintances, colleagues and even some family members, it seems ethically appropriate for the family to refrain from revealing it in an obituary. That would be acting in accordance with the presumed wishes of the deceased. However, it is also possible that some addicted persons would want others to have a fuller picture of how they lived and what they died from.
An altogether different consideration is the possible benefits of disclosure of information about deaths due to drug overdoses. If it could result in the benefit of lessening the stigma of addiction, that would be a good thing.
Although this is mere speculation, if revealing the cause of death in obituaries might motivate more people to seek early treatment for addiction that would clearly be a benefit. These are utilitarian considerations, a perfectly acceptable form of ethical justification.
In the end, unless there is a criminal investigation of some sort and except for the deaths of famous people, it is left to family members to determine what to include in the obituary. They may decide not to include the cause of death because of their own shame, not out of concern for the presumed wishes of the deceased. Or they may choose to reveal the drug overdose in the hope that other addicted individuals will seek treatment and thereby avoid the fate of their loved one.