By David Blackburn
“Judge Not, Lest Ye Be Judged” …
We all remember that phrase and thought from Sunday school. It is a concept worth considering and a good path to follow as we live our lives and interact with the multitudes of people whom we encounter. However, in the case of a patient suffering from alcohol-induced liver disease, the temptation to judge and affix blame to the individual for the dilemma he is facing can be great — from family members, friends, and, most importantly, the medical community.
It is not difficult to understand that mindset. After all, how do most people get liver disease? Sure, the disease can come from a variety of sources and causes, such as tainted blood transfusions, cancer, genetic abnormalities, and the like, but most liver problems have their origins in alcohol and/or drug abuse. In these cases, the patient did not just wake up one day with End Stage Liver Disease — they have probably been treated by many physicians over a period of years who have told them repeatedly to curtail or cease their abusive habits or face the consequences. Many of these patients have also been in and out of rehab centers multiple times and have gone back to their old ways in spite of what they have been told. So when the shoe finally drops and the diagnosis is given, it is easy to see the situation from the physicians’ point of view –you are in a very bad spot, but you have done this to yourself and have refused to follow my advice when there was still time for your liver to recover and repair itself, so now that you are facing death, why do you come crying to me?
There are varying degrees of patient judgment from nearly everyone. Some of those judgmental opinions are based in frustration and anger; some, especially those from medical professionals, are based in experience and the medical history of the patient. Family members usually do not start out rendering a negative judgment about an alcoholic spouse or relative; what they experience is a gradual loss of empathy. They do not understand the actions of the individual and have virtually no experience in dealing with such issues; as time goes by and they see that their efforts to remedy the alcohol and/or substance abuse goes unheeded, they get tired of beating their heads against the brick wall.
Their level of frustration increases and they begin to realize that they are making a lot of sacrifices in their own life that they had not planned on. For example, how many vacation days can someone be expected to devote to doctor’s appointments for someone who refuses to follow the doctor’s advice? How much money can someone be expected to spend — over and over again — on rehab centers and therapists that are not fully covered by insurance? How many company functions can you skip because you cannot run the risk of taking an inebriated spouse with you to those events? How much of your career can you be expected to endanger due to the judgmental reactions of those who are aware of your problem and who view that as a negative factor when it comes to promotions, raises, or transfers? What is your reaction after a long and stress filled day at work when you know that going home is not an opportunity to relax and recharge your batteries, rather it will be reporting for your second job—as a caregiver and arm chair psychiatrist?
How do you deal with the ever increasing sense of isolation experienced by the both of you when you are slowly excluded from family gatherings, such as weddings, dinners, and holidays because everyone else is uncomfortable with your problem? After all, it is not their problem –they have tried to help to the extent they know how and have seen no positive effect, so why should they have to make allowances for the Elephant in the Room? What do you do when you slowly realize that the future no longer holds any brightness or promise; that all the options available seem to be filled with darkness and foreboding?
You can see similar thought patterns with physicians. Some will be kind and understanding, others will not. My wife suffered from alcoholic cirrhosis and liver disease. We visited a young gastroenterologist several years ago who told us flatly that he would not treat Mary and refused to examine her. He said, in a gruff and calloused manner, that if she could stay sober for at least three months, he would consider another appointment. As he escorted us out of his office, I wondered if he skipped school the day they discussed the Hippocratic Oath. That was my first experience with a medical professional who had no tolerance for people with “no self-restraint.” And yes, in case you are wondering, he charged us for the office call.
I remember one doctor in particular who treated Mary over a two year period. She was having liver related health problems and I sought out a gentleman who had the reputation as being one of the best liver specialists in the southeast. On our first visit to Michael Galambos’ office, he reviewed her medical records that we had brought from other doctors and previous hospitalizations as well as her most recent bloodwork. He radiated confidence and knowledge; his expertise and experience in treating people with liver disease was very evident. He was both authoritative and kind as he explained the realities to us both.
“Mary, your liver has been severely damaged and you must put down the alcohol right now — today — and commit to never drinking another drop. If you do that, we can treat you with medications and your liver can recover. You can get past this and live a long and normal life, but you are at the edge of the envelope. You have to stop drinking now; if you do, I can help you. If you don’t, no one will be able to. Do you understand?”
She nodded and said she did. She promised to follow his advice and drink no more because she was tired of feeling sick and was afraid of what would happen if her disease progressed. I was confused about the potential for recovery and asked him for clarification; I did not know that the liver had the ability to regenerate its’ damaged cells.
“Yes, it can heal itself up to a point. That point is exactly where Mary is now. Her liver can get better, but if it suffers too much more damage, she will not have the capacity to recover. That is why it is imperative that she stop drinking immediately and follow my instructions to the letter.”
I was relieved and encouraged by the assessment of this physician and I trusted him completely. I could see Mary was scared, but what we were hearing meant that she had a chance to regain her health and live. She was only 42 years old; there was a difficult road ahead, but it appeared to be navigable.
Sadly, it was not. Mary was unable to stop drinking and her condition continued to deteriorate, slowly at first then with increasing rapidity as time went by. We continued to see Dr. Galambos on a regular basis and he treated her to the best of his ability, but she resisted his efforts in two crucial ways — she did not take all the medications he prescribed for her and she continued to drink every day. We were preparing to relocate from Atlanta back to Texas when I took her to his office for one last visit before we departed for Austin. She was not doing well and he did not hide his feelings when he examined her.
“Mary, I cannot tell you how disappointed I am in you. I can see that you don’t feel well and the reasons why are very clear to me. If you had done what I asked of you when we first met, you would not be sitting in this office today. You would be healthy and well. If you don’t stop drinking – NOW — very soon it will be too late for you. It may be too late already. If you think you are sick now, young lady … believe me, this is the tip of the iceberg for you.”
Time would show the truth and wisdom of his words. Within a year Mary’s health was declining at an exponential rate. Within two years, she was gone.
Dr. Galambos’ frustration with Mary and her inability to stop drinking was much different than my own. He had seen numerous patients over his career who succumbed to liver disease when they could have averted that outcome. His final evaluation of her condition was hard hitting and chilling. Nonetheless, he had tried his best to treat her illness and save her life — even when he knew the odds were not favorable. My own feelings of frustration were far more emotional in nature. How could anyone, I asked myself, continue to propel themselves to destruction when they did not have to?
How could someone that I loved with all my heart be so inconsiderate of how the health problems she was creating and exacerbating were impacting my life as well as her own? These thoughts came to me in the time period when I still thought will power was the key to everything. I had not yet accepted the fact that brain chemistry and the inability of the liver to filter toxins from the blood were as important as they actually are.
Will power — the ability to make a rational decision and see it through — is something that fades very early for someone who is on the path to liver disease. As time passes, that ability decreases slowly but steadily. Unfortunately, most of us who are not wearing the shoes of the individual (who will later become the patient) think that a detox session and a stint in rehab should be all that is necessary to snap that person back to reality and “straighten them out.” As a result, many of us render harsh judgments and become angry when the alcoholic or drug addict will not respond as we wish they would.
I spoke with an attorney once who was convinced that the best thing to do for an alcoholic was to have them involuntarily committed to a court ordered rehab program by a judge. The more I spoke to this lawyer, the more evident it became that he felt alcoholic behavior was something that needed to be punished, not treated. He had no tolerance for anyone who “refused” to confront and conquer their own demons. I saw similar thoughts emanating from a variety of people who, in my current view, had no real understanding of what drives substance abuse or how to deal with it. They were simply frustrated with having to endure it and resented the family member who was forcing that heavy burden upon them. Their empathy was gone; their judgment had been rendered.
The transplant centers are also capable of making subjective judgments about those who are seeking a new liver. They deal with people every day who have come to them for help because they have no other options left. By the time a patient is referred to a transplant center, it is far too late for any treatments other than surgery. No more trips to detox, no more rehab, no more milk thistle … that is all over with. Qualification for listing is a long and complicated process, involving numerous tests and evaluations. Most of these areas of scrutiny are designed to see if the patient is a good candidate for surgery, but one of the unspoken aspects is to give the medical staff a chance to determine whether attempting to save a particular patient is worthwhile or whether it is a wasted effort. They may appear to be warm and fuzzy in your initial meeting, and you may think your prayers have been answered, but make no mistake about it — if they form the opinion that the patient is unable to commit to doing what is necessary post–op, such as lifetime abstinence from booze or dope, they will not list you. If they do not see evidence of strong family support, they will not list you. If you do not satisfy every requirement they have, keep every appointment and attend every meeting they schedule, they will not list you.
One of the transplant centers we dealt with was located in another city and required an overnight stay in order to complete their evaluation. There were meetings scheduled with the nurse coordinators, the surgeon, a social worker, an “informational meeting” that included other patients, bloodwork, x-rays, CAT scans, and so on. The schedule was so tight that it took two full days to get everything done and we ran into what I thought would be a minor snag. We were awaiting our meeting with the social worker, whose function was to verify our insurance benefits and discuss plans for home health care after the surgery. After waiting over forty minutes for her, we were informed that she had gotten tied up and could not make the meeting. I did not think too much of it at the time; after all, we had done everything else and our insurance had approved the procedure. Post–operative home health care seemed a long way down the road and I was sure we could address that at a later time. The nurse coordinator told us to go on home; Mary was completely exhausted and the social worker was unavailable anyway. A few days later I got a call from the social worker wanting to know when we could come back to meet with her. I told her that I had already taken two days off work and had to endure the cost of a hotel and transportation; was it possible to handle her issues over the phone? She quickly replied “NO” — she had to meet with us in person to discuss her short list of issues. I reminded her that we had met her briefly on our first day there and that I had documentation from the insurance company approving our coverage. In addition, I had contacted a home health care agency and preliminary arrangements had been made for them to provide the care Mary would need after her operation. The social worker was inflexible; if we did not return to meet with her, we would not have satisfied the center’s requirements and therefore Mary would not be eligible to be placed on the transplant list. I reminded her that we had been there for the appointment and that she was the one who did not attend, but my efforts were wasted. Rules are rules, and no exceptions would be made.
What I read into her statements was that the most important thing was for us to be willing to jump through every hoop they threw before us, otherwise we would not be demonstrating the proper level of commitment and would be excluded. We were expected to work with them, but they were less than willing to meet us halfway. The physical and emotional toll that Mary, who was in constant pain as well as bedridden most of the time and restricted to a wheelchair for limited mobility, would have to endure by an additional trip to the center was not relevant to the social worker at all.
I was surprised at the attitude of the social worker, but I soon began to realize that the transplant centers are very competitive with one another for funding and status. Each one is an entity unto itself with its own set of requirements and rules. In most cases they do not appear to work together as a network for the benefit of the patient; they choose the patients that they think will accentuate their success ratio and their national standing in order to attract more patients. And the more patients that come to them for help, the more selective they become. If they decide that their statistical ranking amongst other centers will be negatively affected by accepting you as a patient, they will not list you. If they decide you pose more of a risk to their reputation for success than they deem acceptable, they can string the evaluation process out for so long that the patients’ health will deteriorate to a point where they cannot survive the surgery, then the decision is made by default. Not getting placed on the transplant list is tantamount to a death sentence. Therefore, it is very, very important to know what the transplant staff wants to see when they conduct their patient evaluation and to make sure that is exactly what they do see.
Keep in mind that these judgmental issues and their consequences are pretty far down the road for a liver patient. Early on, before the liver disease becomes too pronounced and the most visible issue is alcohol or drug abuse (an emotional problem that evolves into a physical disease), it is difficult for most of us to understand why someone continues a behavioral pattern that is so destructive, especially when the likely results of that behavior are well known. Learning to fully comprehend the underlying causes and reasons for that pattern of behavior is essential to the caregivers and family members of the patient — for their own understanding, and in order for them to make the best decisions possible about how to help the person they love come to grips with this horrible disease.
We have to resist the impulse to judge these people by their actions and rebuild the empathy we have lost. We have to take a step back from the maelstrom of the battle and ask ourselves how it all got this way. I am not a doctor and I have no statistical evidence to support my views, but I have learned a few things from my experience and observations in this arena. I used to believe that anyone could overcome substance abuse and alcoholism if they wanted to do so — after all, many counselors and therapists had told me that “no one changes unless they want to.” I have come to believe that concept is fundamentally flawed and incorrect. Most severe alcoholics and addicts are not simply people who party too hard, they are people in deep trouble who are doing the best they can to deal with an overwhelming set of emotional issues. These issues can be lumped into one category — pain.
Emotional pain is far different than the type of pain that comes from breaking your leg or falling out of a tree. The type of emotional pain that results in continued substance abuse results from early and deep seated trauma, such as neglect, lack of stability during formative times, insecurity, and, as in Mary’s case, child abuse. Most people who suffer these types of trauma never fully develop emotionally; they become ensnared in a never ending cycle of fear and rage. Their emotions never mature and they are forever trapped as that hurt child, always fearing that whatever precipitated that psychic pain will return. They never develop enough self-confidence to fully trust anyone; the trust that they had as a child was turned against them in some fashion and now they remain alone and isolated. Without the proper understanding and recognition of their circumstances by others in their lives, such as family and spouse, they resort to any tool they can to medicate the constant pain and fear that accompanies them every day and night. The result of that self-medicating methodology is the ruin of their physical health — in most cases, liver disease — and, unless the right steps are taken at the right times, death.
So if there is someone in your life who drinks too much or overindulges in either legal or illegal drugs, try to determine what led them there. Investigate their early history and find out what you can from older family members so your vantage point will be an informed one, based in truth and understanding. Let that knowledge guide your actions as you try to formulate a plan to save their life, hopefully before they develop irreversible liver damage. If you love them, help them find the path to life rather than the road to hell.
David Blackburn spent most of his career in sales and sales management with AT&T Advertising Solutions. He has lived and worked in Texas, Florida, Oregon, and Georgia. He is a fifth generation Texan and a graduate of the University of Texas at Austin.
After losing his wife Mary to alcoholism and liver disease, he and Holly Baker, who also lost loved ones to liver disease, formed Surf Therapy Recovery and dedicated themselves to assisting those who suffer from alcoholism and drug addiction. He writes extensively about these topics as well as providing information about the liver transplant process to the patients and families who struggle with that issue. Please visit his websites — www.surftherapyrehab.com and www.marysjourney.org.
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