Virginia's Hospital Experience

As said, on May 3, 2004, my life changed abruptly. What happened was that my wife had to have a hernia operation, and what we thought was a rather simple routine operation had turned out to be highly complex. As it was, Virginia did not have one or three hernias as first predicted by the surgeon, but seven. And, then, to make matters worse, Virginia did not recover from the operation as expected; and, instead, serious complications developed which turned out to be life threatening. Thank God! She did recover, but this is December, seven months later. Where has the time gone? I have hardly written a word for this book since Virginia went to the hospital. Frankly, this last ordeal of seeing my wife through her operation and recovery has left me in a state of weakened spirit, not to mention my physical handicap of not being able to breathe. The truth is I haven’t wanted to write about this last life experience until now. Yet, I have learned from years of experience that it is always best to see each and every life encounter through as clearly as one is capable. The problem is I don’t know how to explain these last seven months without resorting to an elaborate explanation which, I fear, may lead to misinterpretation. What a dilemma. Sometimes I wish I were more like the man down the street: he doesn’t try to understand the why’s and how’s of life; he simply follows the leader.

What a drama, like the wise man said, “Nothing is complicated until we humans begin to question it, but this does not mean that blind acceptance is always the road to bliss; there are times when confusion and conflict is the only road to peace and understanding.”

Maybe, I should practice what I preach and begin to “Listen to the Exhortation of the Dawn,” so elegantly expressed by the ancients when they said, “Look to this Day! For it is Life, the very life. In its brief course lie all the Varieties and Realities of your Existence.” In other words, maybe I should forget how all this will turn out and simply let go to whatever this day may bring.

In order for the outsider to understand these last seven months one must first understand that Virginia and I are not exactly normal. In the first place, we are both recovered alcoholics with a combined total of 85 plus years of continuous sobriety and abstinence from both alcohol and drugs, 43 years for me, and 42 years for Virginia. This alone makes us odd in the world of today because of our staunch stand against the use of any and all mind-altering drugs, and especially odd in hospital setting where the use of drugs are the standard for normalcy. And in the second place, neither Virginia or I are willing to turn our lives over to the care of doctors or anyone without having an active voice in the process. Nor are we willing to surrender our patient’s right to have the final word in respect to medical treatment. This, we thought, we had absolutely clear to everyone within the medical establishment before Virginia had entered the hospital for her operation. But as fate would have it, nothing went according to plan. Not only did the basic hernia operation turn out to be more than expected, but Virginia did not respond to normal recovery procedures. And, to add injury to insult, practically everyone on Virginia’s medical team disregarded her Living Will and Advance Directive about drugs and mind-altering pain medication.

The truth is that I almost lost Virginia. Of course, I could never completely lose Virginia, but you know what I mean. I knew within hours after the operation that something was amiss by the way she was acting and responding to treatment. Unlike the way she recovered from a previous operation some eighteen years ago, which was a more serious life threatening operation, this time she had a very difficult time awakening after the operation, and even after she awoke she was not fully conscious. It was as if she were in a semi-conscious state where the sub-conscious and the conscious mind were in a state of disconnect. The interesting aspect about her condition was the extreme clarity and logic of her sub-conscious mind, even though her conscious mind was unable to clearly sense or comprehend her outer environment or present situation. She knew me, and she knew that she was in grave danger. She also knew that I was her only one who could rescue her from the danger. With all her being and with extreme logic and clarity she begged, threatened, and commanded me to remove her from the hospital. Over and over she said, “James take me home; Get me out of here; I’ll never talk to you again; You don’t love me; If you loved me you would take me home; Get me out of here.” This went on for hour after hour and day after day at various times; and the only reason, I’m sure the doctors didn’t have her drugged unconscious was because of me and the fact that I did not leave her side for the better part of her twelve day stay. To make matters worse, the nursing staff did not understand her condition or the underlying reason for her extreme anxiety.

I don’t know exactly when, but I do remember that it was sometime within the first twenty-four hours after the operation that I began to suspect that Virginia was having a drug related reaction, and that her extreme anxiety and restlessness–as well as her inability to relate consciously and logically to her outer environment–was being brought about by the pain medications being administered to her after the operation and in the recovery room.

Finally, after a horrendous twenty-four plus hours of trying to convince Virginia’s medical team that something was amiss and that Virginia wasn’t just an unruly patient, I evoked my legal Power of Attorney and demanded that her medical team do something now. Consequently, Virginia was removed from the recovery room and taken to the Emergency Room, and not a minute too soon because it was within a short time that her vital signs began to collapse.

I remember the last hour in the recovery room most clearly. Virginia was completely beside herself–more so than at any other time in the hospital. She was in an extreme state of anxiety and physical discomfort. For a lack of better words, everything seemed to be wrong: her mouth was dry and burning; her vision was blurred and seeing things not there; she was unable to remain in any position more than a few minutes; and she kept the nurses and me busy trying to comfort her and keep up with her demands. Actually, it was only because of me that the nurses complied to most of her request. Had I not been there, most of the nurses would have simply ignored her. But why none of the doctors or nurses didn’t suspect or consider the possibility of drug related side effects is beyond my understanding; especially, when the side effects were clearly given by the drug manufacturer, as were the ones given to Virginia.

I remember what on of the nurses said to me just before Virginia was taken to intensive care when I implied that it was the pain medication that was causing Virginia to be such a difficult patient, and that I wanted her to stop treating her as an unruly child having a tantrum–“I don’t have time for this,” she said in a loud voice, as she went stomping out of the room.

At the time, however, and after Virginia was taken to the Emergency Room, it was for me the most demanding days of my life. It is not easy to be responsible for another’s well being, but this was the agreement we had made prior to her operation: we agreed, that in the event she became unable to give her “informed” consent in respect to medical treatment, that I would have complete and unbridled authority to make all health care decisions for her. We also clearly outlined in her Living Will to what extent she was willing to go in order to save her life.

Still, when the time came, and after Virginia’s vital signs dropped to a level where her medical team was seriously considering placing her on full artificial life support, I must confess, I would have rather done anything than to take responsibility for making the final decision as to whether or not to continue in that direction. Yet, I knew that I had no choice but to take command of the situation and stand firm on what I believed to be Virginia’s will. I already knew what the doctors thought, and I knew what my extended family thought: they all believed that we should continue the fight against death to the bitter end and that I should trust science and medicine before my own personal beliefs and perceptions, but I also knew what Virginia and I had come to believe after 43 years of marriage and preparing ourselves for this moment.

For the benefit of the reader, I would like to share the important parts of Virginia’s Living Will:

At such time as I can no longer participate in making the decisions for my own health care, I make the decisions for my own health care, I make the following statement as to my desires:

As those who are near and dear to me well know, I totally reject euthanasia, and I would never permit anyone to end my life as a way of relieving sickness or suffering. But should I become terminally ill, and should I also at the same time become unable to make my own decisions regarding my medical care, it is my heartfelt desire—after years of thought and meditation—that I do not want anyone to use Artificial means for the purpose of prolonging my life or for the purpose of extending my dying process. Moreover: if therapeutic measures are imposing greater burdens than benefits—such as the placing of heavy and useless burdens upon myself and those who are dear to me; or, in the case where the medical treatment given would require me to take mind altering drugs or abnormal amount of pain killing drugs—let them (all artificial life supports be stopped so that I may peacefully die in the Arms of God in the most Natural Way that nature will provide . . . .

In closing then, let me make clear this: Life is not the body, it is the freedom to express one's being as an individual which, in my mind, requires a soul, mind, and body—in this order–the body alone cannot provide this function. When the mind and spirit are disconnected from the body—and we know that the mind and spirit will never return to make us a functioning individual again—the body is meant to die. This is my belief: No one has the right to extend my life beyond what I have said. . . .

It is my one final desire, here on earth, to die AWAKE, AND CONSCIOUS WITHOUT "ANY" DRUGS IN MY SYSTEM; to include all forms of mind altering drugs and pain management drugs—both man made and natural. I want to die as awake and conscious as possible when I leave this earth. I do not want to circumvent or alter the natural process in any way. I want to leave this earth exactly the way I am; without fear, pride, or pretense. As a RECOVERED ALCOHOLIC, with forty-two plus years of sobriety at this moment, I have earned the right to be SOBER when I leave the earth.

Consequently, I had not only the responsibility of adhering to Virginia's desires, but the added burden of making the right decisions. And, then, there was this nagging voice inside me that kept telling me that it was the pain medication that was causing Virginia's vital functions to collapse, and if I had the pain medication stopped she would begin to recover on her own. Besides, I had been researching the drug Lorazepam, one of the drugs being given to Virginia, for side effects—as listed by the manufacturer—and found them to be alarmingly consistent with all of the visible symptoms plaguing Virginia—restlessness, blurred vision, dry mouth, extreme drowsiness, seeing things, shuffling walk, difficulty breathing, and an irregular heartbeat—to name only a few.

Faced with this dilemma, I retreated to a private room in the hospital where I might find the strength and courage to make the right decision for Virginia, as well as for myself.

Finally, after what seemed to be hours (but wasn't), I came to the conclusion that there was no one better suited to make the final decisions for Virginia in respect to her medical treatment than the one who was most closely attached to her by love and devotion. "If this isn't true, I said to myself, "then what in the world is anything about. If Love and Devotion is not a major part of the final answer then this whole affair of existence is a joke. Certainly, God would not mock me in this time of crisis after all these years of Sobriety. If I can't see or read a drug related symptom after all my years of sobriety, and after working with countless others who were also addicted to drugs and alcohol, then who could?"

Armed with this resolution, I notified the doctors in charge of Virginia's care of my decision: Virginia is not to be placed on Artificial Life Support under any condition; and, as of this moment she is not to be given any more injections of the drug Lorazepam for pain and, as of this moment, she is not to be given any more pain medication without my consent.

Needless to say, Virginia's medical team did not like my decision or position. Her primary doctor or surgeon was especially upset. In fact, he hadn't like the tone or contents of Virginia's Living Will and Durable Power of Attorney for Health Care from day one, and now that he was being confronted with the reality of having to adhere to Virginia's Advanced Directive, it was almost more than he could emotionally bear. He made it absolutely clear that he wanted me to give him the authority to decide what was in the best interest of Virginia; especially when it became a matter of life and death.

Nonetheless, I held my ground even after the doctor said that Virginia's Living Will made it impossible for him to perform his duties as a physician. "How can I get your permission for each and every medical treatment I deem necessary in the event of an emergency?" he asked. "I have to be able to make on the spot decisions. I can't go running around looking for you every time I need to make a decision. What if I can't find you?"

It wasn't that I didn't understand what the doctor was saying. I could see his logic and I knew that I was putting him on the spot. But I also knew that there is no better way of approaching danger, or the unknown, than to take it one step at a time and to live within the moment. I had learned years ago that plans, regardless of how carefully constructed, are always behind the time and that the best plan is to always reserve the now for making the final decision.

I remember looking directly into the doctor's eyes just after he finished making his case as to why he was totally opposed to adhering to what Virginia had written into her Living Will, and especially to the letter.

"Now," I said, to my own amazement, "this is what we are going to do. We are not going to make plans for the future. We are going to approach this problem one step at a time and in the process we are going to give Virginia the best medical care possible without the aid of Artificial Life Support, or the drug Lorazepam. Moreover, we are not going to give Virginia any more pain medication unless it is absolutely necessary, and after you have consulted me."

I can still see the doctor's face turn red under the strain as he said, "Well, if I can't give Virginia any pain medication, then, you are going to have to sit up with her day and night because I can't be responsible for her under these conditions." To this I agreed.

Within a few hours after the drug Lorazepam was stopped, Virginia's blood oxygen level began to rise. This was wonderful news because it was Virginia's dangerously low oxygen level that had prompted the doctors to seriously consider placing her on artificial life support in the first place.

Virginia had come to the hospital for a hernia operation, not for pain management or because of an emotional problem. After watching the almost chaotic activity that takes place at times in the present day hospital setting, I can see how such basic things as why a patient entered the hospital in the first place can become all confused and mixed up. There were times when I wondered what it was exactly that the hospital was treating Virginia for—it certainly wasn't like the old days, or even 15 years ago, when everything ran at a much slower pace.

I am still shaking my head in disbelief over the changes that have been made in the hospital during the last few years. Only a few years ago, Virginia had a more serious operation, at which time her chances of survival were extremely negative, yet the entire process was within understanding and control. Basically there was a surgeon, a doctor of internal medicine, the nurses, and the supporting staff and technicians, but they were all under the direct control of the surgeon who performed the operation. This time, when Virginia had an operation, there were so many doctors, specialists, technicians, nurses and tests being given that one never knew who or what was in charge. Not only that, but the main surgeon who performed the operation showed up only two or three times, briefly, after the operation to check on Virginia during her 12-day stay, even though she was in a critical condition much of the time. It was a nightmare, yet the hospital in which Virginia stayed is rated among the best in the country.

The one thing I couldn't help but notice about the whole hospital experience was how unimportant the patient is becoming in the science of medical treatment these days. There were times when I had the feeling that Virginia's medical team didn't think that she had any importance in the process, and that the only important thing was to find the disease and kill it. But, you can't separate the illness from the whole person, and with the elderly this is especially true because they have spent a lifetime developing their beliefs, hopes, and expectations of some greater meaning to life than a mere physical existence. The elderly cannot be treated the same as the young in respect to health care because the elderly are no longer as receptive to their involuntary nature. In other words, the elderly do not respond the same either mentally, emotionally, or physically to a life condition as do those in their youth. This should be obvious, but the subject of shall we fight or shall we night fight the illness is not put forth in this manner. In reality, and for the vast majority of elder individuals lying in a hospital bed, once the fight against death has begun there is no stopping it. And, madly, often times the fight against death continues even after the patient has departed from this existence. Personally, I can think of nothing worse for myself than to lie in a hospital bed fighting death during my last hours on earth. To me, that would be an insult to all I have ever hoped and worked for.

It should be further emphasized, however, that prior to Virginia's operation that everyone–to include the doctors, the hospital, the nurses, and the surgeon in charge–were pre-warned both in writing and in person of Virginia's extreme sensitivity and negative reactions to any and all forms of mind altering drugs (pain medications) because, in the past, she had been both a practicing Alcoholic and drug addict–having been addicted to medically prescribed Percodan. Moreover, the surgeon in charge, at the time, and at his office prior to the operation, assured us–both Virginia and me–that he would be extremely mindful of Virginia's negative sensitivity to pain medication, and especially to those medications containing Narcotics, and that she would be constantly monitored for any and all negative "Side-Effects" a given pain medication may have upon her state of well being. Also, it should be further emphasized that from day two of Virginia's inpatient care at the hospital that I (as her attorney-in-fact) made it absolutely clear to everyone about Virginia's concerns over being given pain medications and of her extreme reactions to any and all mind-altering drugs.

But none of what Virginia and I expected took place. Today, January the fifteenth, 2005, almost nine months later, Virginia has not yet regained her conscious memory of the period from May 3^rd to May 10^th of 2004.

As implied before, Virginia was no longer in grave danger after the drug Lorazepam was stopped and after her vital signs once more began to normalize, but there was still the matter of her physically recovering from the operation and the state of her mental and emotional well-being, which, in anyone's language, had been dealt a mighty blow. I didn't know at the time but the doctors must have given the nurses the go ahead to increase the amount of "Morphine Sulfate" (a narcotic based pain medication) right after I insisted that the drug Lorazepam be stopped. I knew, at the time, that they were administering some Morphine for her pain because I had agreed to a modest amount, but not to the degree that I later found out. As it was, and after I had time to study the medical records in the comfort of my own home, it became obvious to me that Virginia's medical team did not respect her Living Will or my legal right as her attorney-in-fact for health care from the beginning. In fact, the records clearly show that her medical team sought to circumvent our concerns about drugs whenever possible. At the time, though, I must confess, I hd no conception of time; day and night had no meaning, and the difference between hours and days became blurred, which makes me further realize that time is relative to the event. This is why I could never swear in a court of law as to the exact sequence of events that took place at the hospital. The mind does not record events for future reference in a chronological order. This is why we sometimes remember an event that happened many years ago as if the event happened only yesterday and barely remember an event that happened only a few hours ago. The mind records events and conditions in their relationship to importance, not in linear time.

Likewise, I couldn't help but take notice of how the doctors were also influenced by their perception of time. This became evident to me when I would try to communicate with those doctors half my age about the length of time that Virginia and I have been sober, and the relative importance of maintaining our program of total abstinence from alcohol and drugs, even though we had not had either in 43 years. I could see that for those doctors who had not yet been born 43 years ago such information was practically unimportant. Try as they may, they were unable to grasp the importance of conditions and events that lie outside their point of reference or time frame. In other words, whatever happened before they were born was practically insignificant–as can be seen by the following quotes taken from consultations reports entered into Virginia's medical record:

"Patient is currently very anxious. I had a detailed discussion with patient's husband. For some reason, he is extremely emphatic that he would not like the patient to get any anti-anxiety medications unless it is an emergency. He also mentions that he would want to limit the number of pain medications that she gets. I have tried to explain the situation to him. He says that he can be with the patient and calm her down by talking to her."

And then, to quote another doctor who simply wrote into his consultation report the words, "a very complex social case," in order to explain the position Virginia and I had in respect to mind-altering drugs.

Gradually, though, I began to grasp the situation more realistically. I knew I had to stop these people from giving Virginia any more "mind-altering" drugs. I knew from having been a recovered Alcoholic with 43 years of sobriety that Virginia was fighting these people with every fiber of her being to stop them from injecting her with what she thought was killing her. I also knew that "pain was not going to kill her," but if something wasn't done about her other medical problems, they would. I could see clearly that this whole issue of pain control and the abnormal fear of pain by the medical establishment was masking the real problem and in the process preventing Virginia from recovering after the operation. Heaven only knows what her medical team would have done if I had not been there. I have little doubt that under the conditions that they would have drugged Virginia into a state of unconsciousness several times during her stay at the hospital.

Finally, on May the 9^th, at 5:50 PM, Virginia was given her last injection of "Morphine Sulfate," or any other mind-altering drug; but only because–out of sheer desperation and a deep conviction that I was not going to let these people hurt or mock my Beloved's Life or Beliefs–I finally demanded that all pain medications be stopped and that all further pain medications be given only after I was consulted or I was going to hire a private nurse and have Virginia removed from the hospital.

However, I took the above action only after I had talked to the attending doctor, earlier that day, about reducing the amount of pain medication being given to Virginia; and only, then, after the doctor point blank told me that "He had more experience in such matters and that he didn't have time to argue with me"–to which I responded with total conviction that he did not have more experience in such matters and that somehow this issue was going to be settled.

But as fate would have it, the issue was far from being resolved because it was within a relatively short time thereafter that I witnessed, first hand, a nurse literally coax and trick Virginia into accepting an injection of Morphine even after Virginia said, "I don't think I need any pain medication right now...my husband doesn't want me to take nay more...not yet anyway. But the nurse, instead of backing off, continued to persist with such phrases as: "Are you sure you don't want any?; You don't have to hurt, you know: It's your choice.", etc.

It should also be noted that our daughter and I witnessed an almost total transformation of Virginia's mental and emotional state within minutes after she was given her last injection of morphine. In fact, it took all my experience, love, and patience to calm Virginia down for the next several hours; she became totally uncooperative and demanded that I take her home–this went on from 5:50 PM (the time of her last injection) until Midnight, at which time she finally went to sleep.

In the meantime, I took the following action: First, I had a private meeting with another doctor on duty–who fortunately for me came on duty at 6:00 PM, just after Virginia's last Morphine injection–and explained to him my concerns about Virginia's pain medication and my encounters with the nurse and the other doctor in the most forceful way I knew without going beyond the rules of civilized discourse. He assured me that he would have a talk with the nurses and that for the time being he would honor my request, at least on his watch. Otherwise, I stayed with Virginia, constantly, from 5:50 PM until Midnight, at which time she finally calmed down enough to go to sleep. By this time, I, too, was exhausted; so I went to my room in the hospital for some rest. At 4:00 AM, the next morning, May the 10^th (my birthday, which I hadn't realized until this moment), I returned to Virginia's room where I found her awake and acting more like her old self than at any other time since her operation.

It is important to note that at 4:00 AM, May the 10^th, that it had been 10 hours since Virginia was given her last injection of pain medication. This is important because I deliberately went to the head nurse on duty and had her take note of the fact that Virginia had now gone 10* hours without any further pain medication, and that she was not screaming out in pain. I also took the time to point out tot the nurse that Virginia was feeling better mentally, emotionally, and physically than at any other time under their care.

(*Prior to this time, they were giving Virginia an injection of morphine every four hours.)

Nonetheless, I decide then and there, come morning, that I would take additional steps to insure that Virginia would not be given any more pain medication indiscriminately in the future–quite frankly, by this time, I had lost trust in the system. Consequently, no knowing exactly what to do, I decided to go directly to the Vice President in charge as soon as his office opened up at eight o'clock–and if that didn't work enlist the help of an attorney.

But once again, things didn't develop as I expected. Instead of seeing the Vice President I happened to meet a lady in the hall, while waiting for the Vice President's office to open, who said with a smile, "How are you this morning?" upon which , in effect, I replied, "Not very good, in fact I am very unhappy with the treatment my wife is receiving at this hospital."

Upon which, the lady replied, "Why don't you come to my office and tell me about it, " which I did.

It was there in this lady's office, after I told her about my wife's advance directive and about how much trouble I was having with the doctors and staff, that she said, "Personally, I cannot do anything about your problem because I an the Vice President of finance and your problem is not connected to finance, but I can direct you to those who can, " at which time, she picked up the phone and called the Director of the Hospitalists (a term used for those doctors within the hospital who are in charge of inpatient care.) so that I might make arrangement to speak to him privately about my problem.

I don't remember the time, but it was not long after talking to the lady that I did have a private meeting with the Director of Inpatient Care–along with my daughter and the head nurse on the seventh floor where my wife was being cared for. As the meeting turned out, the Director promised both my daughter and me that he would inform the other doctors about our concerns and that in the future the hospital would honor Virginia's Advance Directive and that I would be consulted before Virginia was given any more pain medication which, to my satisfaction, was adhered to for the remainder of Virginia's stay at the hospital.

But unfortunately, facts are mere positioning points, they do not tell the whole story. One can be in a room full of facts and yet be in the dark. Besides, Life is not a factual machine. We humans need love, kindness, and respect to live. We Seniors, especially, need something more than physical sensations. The body to us is not the soul. Somewhere along the way present day medical practices have gotten away from the intrinsic values we humans have developed over the course of our evolutionary development and aspirations.

The reality was that I had to fight nearly everyone on Virginia's medical team before they would even consider the possibility that the "pain medications" they were giving to her we know to have life-threatening side-effects and that they should be administered with great care–and that they should be withdrawn as quickly as possible–and that the "pain" would not kill Virginia, but that mind-altering drugs may most definitely destroy her life.

What did I learn out of all this? What were these last seven months all about? Was I right or wrong to fight the established order? Would Virginia have been better off had I not interfered? And, would the world be better off had I not interfered?

Taking a look at the last question first, "Would the world be better off had I not interfered?"–I am inclined to say no. Without going into details as to how it all came about, I would like to share with the reader the following letter of apology I received from the Vice President of Medical Affairs in my defense:

Dear Mr. Svoboda:

I have been in discussion about the concerns you have raised about your wife's care during her hospitalization at the Medical Center. I have reviewed her medical record and have discussed her case with the physicians who were caring for her.

I wish to apologized to you for the physicians who did not abide by your Power of Attorney. Although these physicians are not employed by hospital, they are members of the medical staff and are expected to comply with requests by an individual holding Power of Attorney. I have clarified this point with them.

Once again, please accept my apologies.

Sincerely,

Vice President, Medical Affairs

Needless to say, I was very happy with the apology because I had absolutely no interest in suing either the hospital or any of the doctors for money; even though we may have had a substantial case against the hospital and at least one of the doctors. And sitting here this moment, as I further write and think about the experience, some eight months later, I am glad that I did not pursue legal channels. I still like what Gandhi said, "You can accomplish a lot if you don't worry about who gets the credit." I think it was Gandhi who said it, but I'm not quite sure. Regardless, whoever said it was a wise man. Keeping one's motives as pure and unselfish as possible is what separates right action from resentment.

Now on to the question as to whether Virginia would have been better off had I not interfered with the establishment. In this case, I believe the facts speak for themselves. Virginia is definitely better off because of my interference. As it turned out, Virginia regained her mental and emotional balance within 12 to 24 hours after all mind-altering drugs were stopped, and she did not have any uncontrollable periods of pain after the pain medication was stopped on May 9^th at 5:50 PM. Moreover, because the drugs no longer masked the cause of her real pain, which was a blood clot caused by the operation and not fear or anxiety, the doctors were able to correct the problem without complications. And as a final benefit of my interference, Virginia does not suffer today from memory loss for her remaining days in the hospital.

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