End of Life Issues August 13, 2023 Dr. Roger Ray
We certainly knew that it was likely to happen, still, when the news reached me one evening last week that the very ill son of a close friend had taken his own life, the news was shocking and several of us have had to try to wade through oceans of tears in a fog of grief for the past several days.
I will avoid using names here to put some distance between my comments and the 40-year-old man who committed suicide. What I think about the way Americans distribute or, more realistically, ration health care and what I think about assisted suicide laws in our nation are, I am certain, quite similar to the deceased and his immediate family, but I will not grant to myself the right to speak for him entirely.
Let’s call the deceased Gary, and his lovely wife, now four months pregnant with their son, we’ll call Nancy. Gary pushed himself to write quite a bit before he ended his life to ease the grief of his loving wife, Nancy, and his mother, father, sister, and friends. A lot of what he wrote was by way of explanation for his suicide but there was also a lot of thought given to express what he felt about the laws around matters of end of life and because I have known a good deal about his fight with insurance companies in order to get the care that might have saved him, there is some prelude about how America has managed how health care is rationed that needs to be said.
I will apologize in advance for the obvious fact that how I present this may not be how Nancy might have said it, or Mark, or Judy, or even Gary, but I want to do my best to give voice to a matter of social ethics which was important for Gary to say and, I believe, it should be important to all of us.
In the past year, I watched Gary’s father, my close friend, pour his life’s blood into writing a huge document, with help from both Nancy and Gary, describing the research and treatments for Gary’s condition, building a case for why his health insurance company should pay for him to have the only surgery that might have given him back some part of his former health. It was like writing a master’s thesis, between one and two hundred pages in length, except that it was not a thesis to earn a graduate degree, it was a thesis intended to save his son’s life. The insurance company rejected the appeal and, though I hate to be too cynical about it, I’m not convinced that they even read the document. It was more profitable for them to just say “no” even though it has cost everyone in Gary’s life dearly.
Over the past two decades I have managed to travel internationally a lot, in Central and South America, the Caribbean, in Africa and the Middle East, as well as in Europe and Asia. Everywhere you go, you see a lot of American television and movies on TV. You see a lot of American products in stores. You know that you are not in Kansas anymore when you sit back in your hotel to watch an old rerun of Ponderosa only to hear Hoss speaking in Hebrew. But what we see all of the time on our TVs that you don’t see in any developed nation, not even in the poor nations, are these TV appeals made by children who have cancer or serious birth defects, asking for donations to pay for their treatment, or their wheelchairs, or their artificial limbs.
You don’t see that sort of thing in other countries because the United States is the only developed nation in the world where people who need medical care have to beg for it. We may have the most advanced medical sciences in the world, but we have the most cruel and indifferent way of distributing it. The wealthy get what they need, the rest of us engage in an insurance crap-shoot in which the insurance company gets to decide what medications, treatments, or help that we are allowed to have.
We have been trying to get universal healthcare in the United States since the days of Roosevelt. Lyndon Johnson thought that he would finally get the job done but he had to settle for Medicare and Medicaid. The real reason that the right has vilified Hillary Clinton has nothing to do with her private server and all of those emails about her daughter’s wedding and their yoga classes . . . it is because Bill Clinton assigned to Hillary the task of designing a universal healthcare system for America in the early days of his presidency and all of the for-profit healthcare businesses from insurance companies, pharmaceutical companies, hospitals, and doctor’s unions jumped on her to ruin her reputation and convince the rest of us that we really don’t want affordable healthcare. It is amazing that grown ups fell for that propaganda but, on the whole, we did.
In 2009, when Obama was promoting what came to be known as “Obama-Care” a half-way step towards universal healthcare, his opponents started screaming about what they called government “death panels.” Folks, the plan was for Gary and Nancy to go to Spain this fall where he could have received the surgery that was denied to him in the USA but sadly, the disease took too much of Gary’s strength to be able to make the trip.
There were other issues, of course…. Not the least of which is that even our medical research and investment is based on a profit motive.
Gary had a very rare disease and so there was no money to be made in researching it or developing medications or treatments. In the past two decades we have come up with four different prescription medications to treat erectile dysfunction and they now market a few different kinds of testosterone cream to make men want to take one of the pills . . . there is money to be made in that! But to save a person’s life… not so much.
Gary may have died prematurely because, in all likelihood, America’s “death panel” sentenced him to death . . . but it wasn’t a government that made the decision to withhold treatment… it was pharmaceutical companies and insurance companies that treated him like his illness was just all in his head while they are pumping ED pills into nursing homes at such a high rate that venereal diseases are a major complaint in retirement homes. . . I hope that the irony is not lost on you.
Sarah Palin tried to scare the feeble minded with her rhetoric about imaginary death panels but there are real death panels in America, and they go by many names…. Humana, Blue Cross, Aetna, Anthem, and Cigna. Today is our time to grieve Gary’s death together but I beg you to save a portion of that emotional energy to also be angry, angry that we continue to make American healthcare the most expensive and unreliably administered healthcare in the world. It is wrong, it is unethical, and as a minister, I am unafraid to publicly call it evil.
We could do what is done in Denmark, Brazil, Thailand, Cuba, or Spain and if we had done this years ago, as we certainly should have, Gary and millions of others would have enjoyed longer and healthier lives even though they were not born into families of millionaires. This is, of course, just my opinion and I know that I could be wrong, but it doesn’t seem likely.
Again, our health insurance limitations and the blinders on pharmaceutical companies, especially in research funding, form the prelude to what needs to be said at this moment but the thing that Gary wrote the most about in the last week of his life is how he was forced to commit suicide in a manner that made him keep secrets from and tell lies to the people he loved the most.
I am certain that most of us who had even the most elementary introduction to philosophy, know about Plato’s account of the death of Socrates. Socrates had been sentenced to death by the government of Athens. The means of his death was to be by drinking poison, hemlock, which was to be self-administered at the time of his choosing. Socrates had to commit suicide, but he was allowed to fill his Athenian jail cell with his friends and loved ones and Plato describes the event in loving and meaningful conversation until Socrates was ready to drink that cup of poison.
That happened 2400 years ago and even though the death sentence was a sham, the laws around his suicide were a thousand times more sophisticated and compassionate than ours are, here in America, today.
Gary would have liked to have had a scene straight out of Plato’s dialogues, where he could have been holding Nancy’s hand, and had his bed surrounded by his family and close friends. Gary had to lie to people to order the items he needed to end his life. He had to keep secrets because if anyone had known what he was going to do, they could have been held criminally liable for not stopping him. If he had held Nancy’s hand while he died, Nancy might be facing a prison sentence, if his dad had known what was in the package Gary had delivered to his home, telling him not to open it because it was to be a surprise gift, then his dad might have faced criminal charges.
There are 11 states with “right to die” laws but most of them require some kind of state approval and approval is based on the person’s illness being imminently terminal. Gary’s condition was deemed to have been chronic but not necessarily lethal. So he was cheated, by law, out of the support of his loved ones.
As Gary wrote just before he died, “I also wanted to feel heard and have my wishes respected. But what I NEEDED was to prepare you, and I couldn't.” He also talked about the fact that if the police or even mental health agencies had learned of his plans, he might have been taken into custody and institutionalized, probably in long term isolation, to prevent him taking his life. They would have treated him as if he were insane or at least profoundly depressed. . . which he most certainly was not.
Gary wrote: Fear of the law and being institutionalized made me withhold from even meeting with my beloved family in my last days. I so wanted to reconnect with many of you, I did. But it's really stressful to hold back something important to say, like "I'm going to die soon, but I still really love you." I couldn't even tell my own wife that I was planning to die, and that is the one that eats at me the most. It would have put us both at too great of a legal risk.
Gary didn’t say it explicitly, but I will say it for him. Even in this dark moment, when he was going to bring about his own death, all of his thoughts were on his loved ones and how he could soften the blow of his suicide. Using the last of his strength, he created a pretense to leave the house alone, called an Uber, checked into a hotel room, sent a text to the coroner’s office about where to find his body, and he used his knowledge of chemistry to slip away from the prison of his illness.
He didn’t want Nancy to find his body. He didn’t want his family to have to know when he was going. He protected everyone else to the greatest extent that he could, but he had to do it alone, in secret, in isolation, because our laws are so primitive and heartless that this was the only way.
Over my 45 years of ministry, I have lost five church members to suicide. In each case, if I had known what they were going to do, I would have done everything physically possible to stop them. I have done thousands of hours of pastoral counseling with deeply depressed people who at least contemplated and some attempted suicide, and I always try to convince them that suicide is a permanent solution to a temporary problem.
I encourage and sometimes I beg them to work towards a solution to their problems that will allow them to go on living. And, I will confess, on more than two occasions, I have had a person put in a mental hospital to prevent their suicide.
In almost every case, suicide is not only not the only answer; it can almost always be argued that it is the worst answer. The problem here is with the word, “almost.” Because, when we legislate that there is only one allowable response to suicide then we are forcing a very complex and eminently personal choice into a very simplistic response of, “just don’t do it.”
What makes complicated decisions complicated is the simple fact that you can quite rationally argue for different conclusions. It is a part of the hypocrisy of the anti-abortion movement in our country now . . . many of these people, motivated by either religion or human compassion, or both, want to take away the choice entirely, under all circumstances, and yet so many of those advocates end up choosing abortion within their own families because of circumstances, either medical or economic, that makes it seem like they should be an exception.
What I hope that I can get you to consider is that when it comes to ethics, there are virtually no absolutes.
What Gary repeated in several letters, what he wanted everyone to understand, is that his suicide should not be viewed in the light we normally talk about suicide in. He was not depressed. He was not even as angry as most of the rest of us have been about a lot of things, the illness itself, the lack of research into it, the recalcitrance of insurance companies, or the rigidity of American end of life laws.
He was at peace with a difficult decision which, arguably, was the best one for him, for Nancy, and for his family. That’s why he was willing to write about it and that is why, even at his funeral, we were very open about his suicide. There is nothing here to be ashamed of, nothing to apologize for, even though we have ample reason to grieve, we have no argument with the decision he made.
I have assiduously avoided saying anything about how he accomplished his peaceful death. I know that you are curious. That’s just natural. But I don’t think that information should be too readily available generally and this certainly isn’t a “how to” talk. Suicide is a strange thing that sometimes seems to set off a string of suicides within a social group and that absolutely should not happen in this case. Gary was sinking into a physical prison from which there was no escape.
He worked on other solutions right up to as recently as last month. When it became evident that nothing else was going to work, he did what none of us could legally help him with. He carried that burden on his own shoulders and in so doing, preserved the dignity and self-determination that was crucial to him.
I respect his choices, I applaud his courage, and I deeply and profoundly honor his thoughtfulness towards Nancy, and his family.
I have heard President Biden reflect several times on his own loss in the tragic deaths within his own family, saying that the day will come that when you remember your loved one, a smile will come to your face before a tear comes to your eye. The journey of grief doesn’t follow a certain path and it doesn’t go in a straight line, but it gets better. In the end, the most important things about Gary had nothing to do with his illness, his early death, or the way that he died.
He was an amazing man, intelligent, creative, capable, athletic, passionate. He was a great husband, a wonderful son and brother, a generous and thoughtful uncle, and a great friend. And, at the end of the year, just five months after his death, he will become a father.
I say all of this to make this point: suicide, no matter how wrong it is in most instances, is sometimes the best choice. Our problem in America is, who gets to make the choice? Gary knew how to end his life painlessly and quickly, but everyone doesn’t. He had to do it under a layer of lies and deception, but he was able to get it done. That isn’t true for everyone.
When a person gets to the point where the future has only pain and isolation to offer, who should a person be required to consult for permission? You might choose to consult your family, a trusted physician, a spiritual leader, but should you have to? Should you have to have a court rule on your decision? Should that state legislature be allowed to define the allowed exceptions?
It is a subject too serious to ever be taken lightly, and we still want to prevent every suicide that is a matter of short term depression or irrational thinking, but surely we can find a way to get the government out of such an absolutely personal decision.
I will never forget the night that my eldest brother and I stood on either side of our mother’s hospital bed in the intensive care unit of a hospital in Birmingham, Alabama. It was March 19, 2003. I know that because it was the day that the United States started bombing Bagdad. My brother, a very traditional United Methodist pastor and staunch Republican, watched the TV in the corner with glee, cheering on the inflated reports of how much damage was being done with each sortie, while I was seething at this illegal war. But between us our mother lied, unconscious, on a respirator, visibly suffering with no hope of recovery. I looked at my brother and said, “If we were putting our family dog through this we would be put in prison for cruelty to an animal, but if we don’t put our mother through this senseless pain, then we would be callous and maybe even murderers.” On that point, we agreed . . . possibly the only thing we have agreed on in the past 20 years, but the hypocrisy of our end of life laws remain a blight on our nation which too often insists one size fits all ethics when we all know that is just a lot more complicated than that.
While I hold strong views on topics like the right to die, abortion, and same sex marriage as many others hold passionate views that are the opposite of mine, my humble suggestion about how we should proceed in each of these matters is to allow for individual decision making. A person who is considering getting abortion, or ending their own life, may certainly want to consult with family, or a physician, or a spiritual advisor but they shouldn’t be mandated to speak to anyone else and there is, in my opinion, no role for the police, the sheriff, or the state legislature in any of these decisions. Legislators are rarely physicians or scientists and more often they are, basically, clueless and so they should be the last ones empowered to make personal decisions for you, or me, or anyone else.
I’m making the suggestion that we keep our government out of our bedroom and away from our death beds. Protect our borders. Facilitate transportation, and regulate banking and finance. The personal stuff is, well, personal, isn’t it?
