Let’s Talk: Is Euthanasia a Choice or Threat?
By Seth Keller, MD, FAAN
It’s difficult to talk about death and dying — and even more so when we’re discussing a sensitive subject like euthanasia. In the healthcare world we have to normalize this conversation, especially for our patients with Intellectual & Developmental Disabilities (IDD) because they are most vulnerable to premature death and euthanasia globally. To best understand the present-day threat to people with IDD, it’s important to dissect euthanasia from a historic perspective and through an ethical, moral and governmental lens.
With euthanasia, the big question is: Do we have a choice in how and under what circumstances our end will come? The consideration that dying is a better alternative to living is made because a terrible situation makes life intolerable and mentally or physically painful — and the future for a hopeful positive outcome is out of reach.
A Quick History
A bust of Hippocrates
I suspect most people would agree suffering is a horrible and unfair outcome that shouldn’t happen to any of us. The practice of euthanasia has historically been a point of discussion by advocates, ethicists, sociologists and the healthcare system dating back 3,000 years to ancient Roman, Greek and Spartan societies. The Greek philosopher Plato stated that patients unable to live a normal life due to their suffering, should not receive treatment to prolong life.
Hippocrates, a contemporary of Plato known as the father of medicine, was against active euthanasia.
The well-known Hippocratic Oath prohibits doctors from administering any drug which could result in death: “I will neither give a deadly drug to anybody if asked for it, nor will I make any suggestion to this effect.”
However, Hippocrates suggested that a physician should not treat a patient who has an incurable disease. According to his oath, they should “refuse to treat those who are overmastered by their disease realizing that in such cases, medicine is powerless.”
The concepts of infanticide due to impairments in early childhood, as well as the decision to end a life because of terminal conditions and situations, are mostly predicated upon cultural mores and religious beliefs. The differences between active and passive euthanasia and the intent to which the act was to be carried have been debated throughout history.
The nuances of this ethical and moralistic debate are made even more challenging in those with IDD. People with IDD have not been held in high regard throughout history. Unfortunately, the worth of people with IDD would be called into question — as well as their worth to a family and society — when faced with whether or not to preserve their life.
Euthanasia refers to either an act or an omission that intentionally brings about the death of another person for that person’s sake. Historically, heroic and noble intent had been tied to the practice of euthanasia. A personal and humanistic view would include saving the person from suffering and taking them away from misery. Other aspects involve a more societal perspective. The person deemed to have no value, or viewed as a life not worth living, would be considered into the decision-making that governments have used in their past and current practices. Key to this debate is how the person is viewed and the intent behind the consideration of euthanasia.
People with IDD are particularly vulnerable to death and dying because they are often born with complex and fragile health complications that persist throughout their life and can become even more tenuous as they age. Many people experience significant swallowing, breathing and motor dysfunction, all of which may require a number of aggressive interventions to help support that person who may otherwise die. Neurologic complications, including frequent seizures, spasticity, hydrocephalus, as well as age-related complications might happen and put the person in a compromising health crisis at one time or another.
Many people with IDD didn’t survive past infancy due to many of these complications. And the lack of aggressive intervention was either not medically known at that time, or the intervention may not have been considered to be necessary as the person may have been deemed to be “not worthy.”
Active or Passive
The act of euthanasia can be provided either actively or passively. The intent may be to reduce suffering to the person or to reduce the burden to society. And the decision is made by an outside entity or the person themselves.
Active euthanasia is the process in which a specific intervention is purposely done to the person that would lead to end of life. Examples include suicide and assisted suicide. The way in which end of life is provided is beyond the scope of this article, however, the intent of euthanasia and whether the person who is being provided this death sentence is part of the discussion as it is relevant.
A dramatic form of euthanasia was carried out by the Nazi regime in the 1930s and 40s. The Nazis created a specific euthanasia program which was designated as T4. The goal was to kill people with mental and physical disabilities. In the Nazi view, this would cleanse the Aryan race of people considered genetically defective and a financial burden to society.
T4 was actively supported by Nazi doctors and nurses who willingly carried out this “duty” in their support of Adolf Hitler and the Nazi party. A very chilling video was created a number of years ago as a reenactment that demonstrated this view, “The Nazi Nurse.”
The Eugenics movement, which was popularized around the world, including in the United States, was a parallel philosophy. Inherently, eugenics and active euthanasia by the Nazi’s is based on a major devaluing of the worth of those with IDD. Sadly, the philosophy of eugenics was widespread among a number of academics and politicians during that time period. Highly regarded neurologists penned their views on this topic, including William Gordon Lennox in an article “The Moral Issue” (1950) calling for the mercy killing of "children with undeveloped or misformed brains'' as a way of opening up space in "our hopelessly clogged institutions.” Lennox-Gastaut syndrome is a neurodevelopmental disorder named after Dr. Lennox, who had done research and a review of children with specific characteristics, including brain wave/EEG patterns and seizure types in those with IDD.
More recently, the Netherlands created the Groningen protocol. This practice is a form of active euthanasia for severely disabled babies who were determined to be “suffering” and their life was not worth living so, therefore, after an internal review, they would be provided an intervention to end their life. Their families are involved in this decision.
Passive euthanasia is another way in which end of life can occur, and although this may be subtle and may often not be appreciated by the way in which it occurs, the end result is the same.
The American author Albert Deutsch wrote a book “The Shame of the States” in which he described the terrible conditions within the American mental hospitals in the 1940s. He described “Euthanasia by neglect.”
There was significant poor quality of care, lack of access to support services and an inherent devaluing of this population, which ultimately led to many people dying prematurely from health complications, while others with the same complications were saved.
Dr. Death
The sanctity of life and the belief that being able to assist with ending a life deemed to be not worth living, was deeply embedded in the actions of Dr. Jack Kevorkian. He became known as “Dr. Death” in the 1990s. He was a pathologist who provided assisted suicide to 130 people between 1990 and 1998. A review of his actions revealed that many people he assisted in their death were not terminal, and a number may have suffered from untreated pain and depression. In an interview with Sanjay Gupta with CNN in 1990, he offered very little on values and the sanctity of life. Dr. Kevorkian was convicted of second-degree murder in 1999 and served eight years for assisting in the suicide of a person with ALS. Is it conceivable that the notoriety and publicity created by his actions led to an improvement in our current pain medicine practices, as well as in the development of our current palliative and hospice care.
The life expectancy of those with IDD has improved across the world in many countries, however it still lags behind those without IDD. Some of this difference in life expectancy may be due to the person’s own significant complex health complications—but there is unfortunately indication that due to lack of quality health services for those with IDD, including a dearth in research and education and training for health professionals, great disparities still exist.
The Tragedy Today
Dr. Keller in Ukraine with a young boy with disabilities.
I visited Ukraine in June 2022 where I served as the medical eyes and ears for Disability Rights International (DRI). Institutionalized care of those with IDD is certainly not unique to Ukraine, as it is a very prevalent practice which still exists throughout the world, especially in former Soviet Union bloc countries. Lack of support to families in the community, as well as an overall devaluing of those with IDD, leads to the continuation of their state-run institutions, but also to the associated poor quality of care and support to those with IDD living there. Many babies and children born with significant IDD and associated complications will not survive, and those that do will die many years earlier than their age-matched peers who do not have IDD. Often, death occurs from aspiration and heart failure. Average life span maybe the mid 40s.
A documentary from the BBC with reporting by Richard Engel of NBC news highlights this disturbing tragedy unfolding today.
Disability advocates are all too aware of the devaluing of people with disabilities and, in particular, about the casual life-and-death decisions based on assumptions and biases about the value and “worth” of a life. The advocacy organization, Not Dead Yet, is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination. This organization’s efforts and views voice the moral outrage over this and the great importance of having a voice and position to protect the rights of those with disabilities.
Finally, I do hope and believe that most reading this article strongly advocate for those with IDD and absolutely would not ever wish for those that they know, care and support and love to ever suffer. The decision that life is not worth living is value based.
Since many with IDD may not be able to express their own personal views on whether they are suffering and whether their lives have no value, there should be a review about them and the decision to end their life—either actively or passively.
To not provide them with much needed care is an ongoing personal and societal issue that deserves much more thought and consideration.
Life is precious. Being able to feel the warmth of the sun, the joy of being loved and cared for, being provided nutrition and hydration without risk of choking, and being given an opportunity at a better life within our community is what every citizen deserves around the world.
Life is worth living.
“Do not cast me aside in my old age; as my strength fails, do not forsake me.” – Psalm 71:9
The Author
Seth M. Keller, MD, FAAN
Seth M. Keller, MD is a board-certified neurologist in private practice with Neurology Associates of South Jersey. He specializes in the evaluation and care of adults with Intellectual and Developmental Disabilities (I/DD) with neurologic complications. Dr. Keller is on the Executive Board of the Arc of Burlington County, as well as on the board for The Arc of New Jersey Mainstreaming Medical Care Board. Dr. Keller is the Past President of the American Academy of Developmental Medicine and Dentistry (AADMD). He is the co-president of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG).