Posted on 26 April 2010.
I’ve grown very familiar with the U.S. healthcare system due to a variety of reasons, my work with hospitals being one of them. But the biggest reason is that I’m spending increasingly more time in hospitals and around doctors now due to the failing health of two of my relatives. While their situations are very different, the end result is oh so similar and not very pretty.
First, my mother’s situation.
My mother has been dying for the last ten years. But before I dive into this, please don’t feel any sympathy for me or my family — she’s been dying all these years because that is the only thing she has believed, regardless of what any family member or doctor told her to the contrary. For all we know, she could live ten more years which would probably scare her more than us.
It all started in 1996 when my mother’s life began to quickly lose meaning after my father passed away. While that in itself is sad, it has really been her choice. She has four grown children and eight grandchildren along with a good handful of friends, yet she has made little to no effort to be involved in any of our lives. Instead, she lives in the past, talking about how good it was and how happy she was. And she fears the future.
Then ten years ago my mother found out she had emphysema after being admitted to the hospital because she was convinced she was dying of lung cancer. While relieved at first that she was okay, she couldn’t believe she was fine and quickly became obsessed with her health. Each time she spent a week in the hospital, she would leave in a better frame of mind because “she made it”. But within a few weeks, she would be wondering again if that slight cough she just experienced meant she was coming down with something deadly. And after a week or two of working herself into a tizzy, she’d be back in the hospital, getting drugs and attention until she calmed down. Each time she was told she was still fine. After a few years of this cycle (including one lengthy stay in a drug rehab facility to get her off the pain medication she demanded from her doctor), I noticed her outlook for the future became even more dim every time she was discharged.
As time went on, my mother would tell the doctors that each breathing episode was worse than the last, and they would believe her. This frustrated all who knew her well because we could see that some days she was fine and that she certainly wasn’t on death’s doorstep. But our views didn’t jive with my mother’s view, so she grew frustrated with us and instead of improving, made it her mission to convince others that she absolutely was getting worse. She became very good at this game of manipulation. So good, in fact, that in one case her lung doctor told me after visiting with her that she had only six months to live. I replied that she was being fooled by my mother’s exaggerated antics and would certainly live much longer. The doctor told me I was “rude” and “selfish” because I knew nothing of her physical condition. While that was true to some degree, I knew far more about her mental condition and wanted to stress to the doctor that I knew her better than she did. Things got tense between us when I told the doctor that she was the one who was selfish for patronizing her with constant appointments and for feeding my mother all the drugs she requested. “We’ll see who is right” was all I mumbled as I walked away. That was six years ago. Funny, but that doctor is no longer in practice.
My mother’s decade long battle with emphysema has been turned into a long and sad journey for everyone, including her, almost from the beginning, with really no end in sight as far as everyone other than my mother can tell (and she has always thought the end was tomorrow). While her lungs are worse now than before, doctors tell me they aren’t so bad that they should be causing the type of problems that constantly drive her into the hospital. I believe her stress is the cause for her “related, but unrelated” problems, not her lungs.
You see, my mother uses the healthcare system to deal with her fears rather than her health. She says she’s suffering, so our medical professionals do all they can to help by prescribing drugs, running tests, and pursuing all angles to find a solution. Plus, my mother knows well the Medicare system. She knows how many days she gets in a hospital, and how to complain just right to get an extension. And she spends her time at home on the phone complaining to anyone who will listen at Medicare or the doctor’s office about the price of “her drugs” until she gets a reduction in the price or free samples. If she put all this energy to work in a positive way, she could have made a fortune. But this is a woman who, on average, earned about $14,000 per year for ten years. Her contributions to our healthcare system were minimal — yet her expenses are astronomical, and there is no end in sight that I can see. She is costing all of us hundreds of thousands of dollars, yet is still critical of those who try to help. She hates Medicare and Medicaid. She hates “being rushed out of the hospital”. And she hates the cost of everything. For support, she listens to the likes of Glenn Beck, Sean Hannity, and all the rest of the fear mongers who play victim and insist that the government is out to get them. And she thinks they’re right.
Now don’t get me wrong. I’d love for my mother to live a long and happy life. And I would do everything in my power to give her that. But she doesn’t want it.
In the amusement park of life, my mother hasn’t ventured far from the exit. She hasn’t enjoyed one ride, or even enjoyed watching others enjoy the rides for the last ten years. Instead, she stands there, staring at the dark exit day after day fearing that it will call her forward. She even thinks she hears her name being called until someone shows her clearly that the door is locked and nobody is leaving.
It might sound mean for me to say about my mother, but the “problem” isn’t medical. Instead, the problem is in her head, and it’s exacerbated by doctors and hospital staff who wait on her hand and foot when what she really needs is a psychiatrist (yes, I suggested this many times and always got an “absolutely not”). But I don’t blame the doctors at all. They took an oath to do their best to help, and that’s what they do. Plus, the medical wold is now a competitive business, so doctors and hospitals want patients. They want the billings. And they want the satisfaction of helping people get back to normal. But all of this has a cost. And that cost is being paid by all of us.
Now I’m fine with paying my share to help those who want to live. But why pay for those who don’t? I know my mother would rather not be alive. She knows it too, and has even told me. But she fears death more. So she stands on guard, analyzing every ailment and every breath just waiting for “the one” to take her away. And as I wrote, she wants a physical solution, not a mental one.
It’s not fair that anyone lives a life that is lifeless. But that’s her choice. The only way that I, and all of us, are affected by her choice is that we’re forced to pay for it in time, dollars, responsibilities and heartache. And I don’t think that’s fair to anyone.
Then there’s my father-in-law. He too is dying, although for very different reasons. He’s 86 years old and has been struggling the past few months with his health. Until these recent setbacks, he was the ideal patient because he always got his checkups, always followed doctors orders, and always knew he’d improve. His struggles the past few weeks though changed all that. As if in disgust with his health and his seemingly impossible chances of recovering to a normal life, he gave up on dialysis in the middle of this past week. From what I’ve learned, he has a week or two left. And that’s sad, not just for him, but for all who love him.
You see, he never wanted to live in an Assisted Living Facility, or be a burden, or be resuscitated if God called him. But when he was brought into the hospital with some life threatening problems (yes, more than one) that had him almost, but not quite unconscious, the doctors saved the day. And that was great — kind of.
While recovering a few weeks ago, the doctors asked him if he wanted to go on dialysis to prolong his life. “What other option is there?”, he asked. “You can just let nature take its course, and you’ll pass peacefully” is what he was told. Being a dedicated, life-long Catholic, my father-in-law saw this second option as suicide. At 86, he feared this choice would get him booted from heaven. So he opted for dialysis.
While all of his children understood it was his choice, they also knew that dialysis was really not what he wanted. They warned him as tactfully as they could about the difficulties he faced by making such a decision, but at the time his mind was too clouded by drugs and too tired from the whole ordeal to understand the path he started on. His fear of committing suicide was far stronger than his ability to know what he was doing.
It surprised no one that my father-in-law wanted to keep trying, simply because he had no idea what he was really trying to accomplish other than to not kill himself. Yes, he could talk and yes, his words made sense. However, if you talked to him, then left the room for five minutes and returned, he would act as if you just got there. Even worse, he had no concept what the “future” was, much less how dire his situation was at the time. He really had no clue what he was getting into.
So why did the doctors ask him to make a choice and not his family? First, it’s their oath to do all they can. Second, doctors fear lawsuits, and rightfully so. Too many people claim too often that doctors made the “wrong” decision, so they are always going to do what the patient wants — even if it’s futile. This isn’t a slap at our doctors. Hardly. They are committed to extending lives, not ending them; therefore, they should not be put in the conflicting position of recommending death over life, especially when the patient is coherent.
But I think somebody should. And that’s where a so-called death panel comes in (on a side note, I must admit I despise that name. How about “Life Panel”?).
In my mother’s case, a Life Panel could ultimately help relieve her of a decade long bought with severe depression as well as clear all who care for her of the guilt and burden that comes with trying to satisfy her insatiable appetite for an elusive, if not altogether impossible happiness. In my father-in-law’s case, a Life Panel would have relieved him of the burden of committing suicide, while relieving his family of the guilt and burden that comes with caring for someone who doesn’t know what he is doing here and really needs to end his misery in a respectable way.
I know all of this might sound harsh, especially to those who haven’t come close to finding themselves in similar situations. But I also know others who have been or are in my spot, and most are of similar mind. I’m not saying anyone should be given a death sentence if there’s still hope, or if anyone close to the patient wants to keep their hopes alive. I’m not a fan of Dr. Kevorkian (those people could still live and function). All I’m saying is that the idea of a Death Panel should not be seen as taboo.
So could a Death Panel/Life Panel be an answer to these unusual situations? Wow, tough question, and I really don’t have an answer. Everyone’s situation is different, so I know there isn’t one answer. All I know is that the subject shouldn’t be taboo. Healthcare is so complex, we must be open to all ideas — even when they’re not pretty.
So I say “start the discussion” and don’t fear. We cannot live forever, and unfortunately too many people are living long after they have died.