His Last Three Days

 

 

Roy Volkwyn

Introduction

This is my story, of how I decided, based upon incorrect information from doctors, that my father should not receive medication and later, that his supply of water, administered via nasal gastro tube, could be stopped. I was never comfortable with both decisions. Just a few days after my father’s funeral, I learnt that the decision to stop medication was, I believe, totally wrong. Two and a half years after his death, I learnt that death by starvation and dehydration while an increasingly common practice in many hospitals around the world, is inhumane and barbaric. My father had pneumonia as well, which was never treated. Whether he died of pneumonia or dehydration is irrelevant – he suffered thirst, and his lips and tongue clearly exhibited the unmistakable signs of severe dehydration. Some details are, at this stage, being deliberately withheld from the account below, as Police investigations are continuing into the circumstances surrounding the death of IT Volkwyn.

Why I have published this very personal account, on public Internet

Deliberately withholding treatment in hospitals so that patients can die, is an increasingly common practice. In the USA, around 2 million patents die from withholding treatment each year. Doctors pressurize family members to have feeding tubes removed from brain damaged patients. If you are unprepared for this situation, you could, like me, end up making the wrong decision. You need to study the subject a little, so that you can make an informed decision if ever you are in the unfortunate position of having to decide whether a loved one will live or die. This website, and the links provided, while by no means a treatise on the subjects of stroke care and therapy, and death by starvation and dehydration, will provide you with a lot of information that will help you to decide. I did not have this information when I took those 2 fateful decisions. Until my dying day, I will be reminded that I needlessly sentenced my father to death, and a horrible death at that. Hopefully, this information will spare many others from making wrong decisions that they will never forget.

My story

Ensure, the liquid nutrient, had been stopped on Wednesday night, and my father had just being getting water. I was planning to discuss this with the doctor(s) on the Thursday, as I was not happy about this. The professor arrived and examined my father before I got to the small room where he was located. He was not thoroughly examined, I learnt later. I was told that my father only had a few more hours to live, and that he could be expected to die at any time. I was also told that there was nothing the doctors could do for my father any more. At the time, I believed the story that my father would die very soon. So at that stage, I did not regard stopping of food and water as a planned murder.

My first thought was that my father would get thirsty. The professor stated that based upon all available research, people in a state like my father do not experience hunger or thirst. I was not convinced. I asked what advantage there was in removing the water tube. The Professor said the nasal gastric pipe caused discomfort, and my father would be more comfortable with this pipe removed. It did not seem logical that my father could not experience thirst, but would experience discomfort from the pipe. I needed another opinion. I asked my wife, who had first arrived at the hospital perhaps an hour earlier. She confirmed that the best we could do, was to make my father as comfortable as possible, for the last few hours.

I was still not convinced, but regrettably I consented to the removal of the water pipe without first consulting my younger sister Barbara, or my brother Michael.

Many thoughts went through my mind before, and long after that fateful decision. I had been told earlier by another family member that if I wanted my father to recover, I would have to look after him. I had been told by the professor that it required unlimited financial resources, as well as specialised clinics not available in SA, for proper therapy and rehabilitation of a person who, like my father, had a massive left brain stroke. Without such specialised treatment and therapy, my father could be expected to have a poor quality of life. At one stage, a few days before, a catheter had been pushed up my father’s urethra, an extremely painful procedure. He had been twice to the constriction ward in the urology dept where this procedure had been performed on him 12 years earlier, and he then vowed he would never undergo such a procedure again. Perhaps as a result of being hurt by this procedure at the hospital after his stroke, he sometimes seemed to resist being treated by nurses. For example, although he appeared unconscious sometime after Tuesday, he once refused to permit a nurse to life his arm to take his blood pressure. He in fact pressed his arm downwards with considerable force, when someone tried to lift it. I had no idea why he had done this. Was it because he did not want to be given medical treatment? Was it because nurses had hurt him? Long after his death, I wondered whether it was his way of letting the nurses to know that he was not unconscious, and was able to consciously do things.

I knew that the state would not pay for high care treatment over an extended period of time for an elderly person. I would have been able to hire first class private medical care for several months, but thereafter I would not be able to obtain funds without taking out a bond on my house and a huge loan. I did not wish to do this, as his survival could not be guaranteed and many stroke victims get recurrent strokes. I also thought it was not fair to prolong his suffering in the hospital. But I also thought there was a high probability that he would die within a few hours, as I was told several times, on different occasions. He also had severe pneumonia, which was not treated, and I knew pneumonia can kill very quickly. 12 years earlier, my mother died from pneumonia days after getting stroke.

My youngest two children had flown down with my wife. They both came to the room sometime that Thursday morning. My son was the only grandson, and therefore the only person who would continue to carry my father’s family name. My elder sister believed that my father had a special attachment to his grandson. When he entered the room, my sister spoke to my father in Afrikaans (his home language when he was growing up, and his preferred language to speak to his sisters while they were alive). Translated, she said:” Daddy, acknowledge that your grandson Maurice is here!” My father could not of course speak, due to the left brain stroke [ bleeding and brain damage on the left side of the brain, which paralyses the right half of the body, and affects speech.] . However, he immediately gave a few quick grunts. The only other time I heard him grunt, was when the vacuum tube was pushed into his lungs to drain the pneumonia fluid. This episode made me quite a sad, and made me wonder whether he really was in a deep coma.

My youngest children came once more to my father’s room, perhaps later that day, I think it was later that day, but it could have been on the Friday. I said to my Dad that they had come to say their final goodbye. Both their expressions changed immediately. It was clear they had hoped he would recover, and they could not accept that he would die. I felt guilty, and I thought that my children were unhappy about him not being treated. However, I thought the matter was too painful to discuss with them, not only there and then, but even up to this day.

Barbara was totally against the withholding of medication, food and water. She said to me several times: “Is this not murder”. I think I once responded by saying :”Is this not natures way of taking him? In early times, this is how people would die after a severe stroke”. I always had my doubts whether we were doing the correct thing.

I decided that, should my father make some miraculous recovery, we could ask the doctors to resume treatment. A short while thereafter, my brother Michael arrived. There were several family members walking with him. I said to him: they’ve taken Daddy’s water pipe out”. My brother did not show any reaction, and I took this to mean that he had accepted that my father would die very soon, and that there was thus no reason why food or water was of any significance.

Later that afternoon, my daughter Liana, a 3rd year medical student arrived. She could not understand why food and water had been stopped, as his heartbeat was strong and his breathing was good. She asked whether we had done enough before stopping food and water. I was not in the room when she first got in there, but I got to hear about it shortly thereafter. I felt very happy that someone with some medical training had questioned the decision. Someone, possibly even myself, I can’t remember, arranged for a doctor to speak to Liana and I, to explain the decision taken by the doctors. After a wait that seemd like hours, someone did come to speak to us. He was an Intern, not a qualified doctor. He explained that with a massive stroke like my father had had, specialised stroke clinics were required with round the clock specialised care. He said SA did not have clinics such as these. He said one required unlimited amounts of money to be able to pay for that kind of treatment and therapy. Even so, it could be a very long time, even years, for the stroke victim to be able to live a meaningful life. He said my father would have to be taught from scratch how to red and write, using pictures. I asked if another brain scan would not show conclusively whether the brain damage was so severe that one could be sure the prognosis for a good recovery was very poor. I explained that on Tuesday the professor had said one required 5 days to be able to tell for sure if the patient was going to make a good recovery, and at that stage, it did seem as though my father would make a good recovery. He suffered some setback around midday on Tuesday, which I suspect as a second stroke. I asked the intern how could we assess the brain damage without another scan. The Intern said another scan was not required, they could tell by the lack of progress/signs of recovery that my father must have had a massive stroke. He said by now there should have been some visible signs, such as my father being able to open his eye(s) and look at people, for example. I’m not sure if it was in response to a question by me, but the Intern said that my father’s pneumonia was easily treatable. Until then, I had thought that once a person with a stroke gets pneumonia, they will die very quickly from pneumonia, as my mother did, 12 years previously. The intern said that much progress and been made with antibiotics for pneumonia treatment in recent years. He said while it was easily treatable, my father would get it again and again, and would be left weaker and weaker after each bout. Liana and I then came to accept, although we both felt uncomfortable about it, that the present course of action was perhaps the best.

I continued to sit at my father’s bedside most of the time, as I had done since the Monday night. I had taken leave to be at the hospital, and I was some 1600 km from my home in Pretoria. I had nothing to do outside of the hospital, except to eat and sleep for one to two hours per day, and then I would be back again. Unless someone else was on his left side, I would normally sit on the left side of the bed, and hold his left hand. If I went away from his bedside, upon my return I would hold his hand and tell him I had come back to be with him.

Thrice during the night, my father had his lungs drained, and I chose to stay in the room while this was being done, although nurses normally ask family members to leave while this quick but very traumatic procedure is being carried out. A single biscuit crumb, or a single drop of liquid going “down the wrong way” into the air passages causes extreme discomfort in a normal human being. Having a pipe pushed down the throat and into the lungs must surely be a far worse experience an one crumb, or drop of liquid. My father grunted and it was clear his body rebelled forcefully against this procedure, but this was necessary to prevent him drowning in the pneumonia fluid. To assist in getting the pipe down, the nurse would insert a mouthpiece, in then push the pipe through the mouthpiece. Inserting the mouthpiece was difficult with my father’s mouth being so dry. I would point this out to the nurses, whereupon they would first wet the mouthpiece before inserting it. My father would bite very hard on the mouthpiece, and on the first two occasions that night, he continued to bite on the mouthpiece after the nurse had completed the procedure, so that the mouthpiece could not be removed. The nurse would then gently tough him under his chin, and ask him to release. Only then would my father release, permitting removal of the mouthpiece.I used to periodically move the tips of my father’s fingers on his left had, with my fingers. His left hand would generally be motionless for a long time, but suddenly he would squeeze my hand. Then there would be no life in that hand for a few more hours.

Around midnight that Thursday night, someone in the room suddenly started criticizing Liana for questioning the doctors’ decision. I was holding my father’s left hand at the time. I then defended my daughter, saying she was merely doing what medical students were trained to do. While I was speaking, my father gave my hand a quick squeeze with his hand, relaxed for a short moment, and then gave another quick squeeze. I call this sequence a double squeeze, and the entire duration of one double squeeze was around one second at most. My father gave two double squeezes in quick succession, with perhaps 3-5 seconds delay separating these two double squeezes. My father was supposed to be in a coma, and as most of us know, people in a coma can hear, and remember what they hear while in that state. But people in a coma are supposed to be unable to react to external stimuli, or to consciously make body movements. Up to the time of his stroke, my father use to play golf, and he used to exercise his forearm muscles using the V-shaped spring handgrips. While he was able to, after his stroke, he could give quite a hard squeeze with his hand.

Also round about that time, while my hand was clasped around his fingers, he struggled to pull back his forefinger and took quiet a few seconds to do so, as his finger movement was constrained by my grip on his fingers. Eventually he freed his forefinger, and then slid it over the top of my forefinger, curled it around my forefinger and then he tightly squeezed my finger with his finger. I knew that this was a conscious and deliberate action that he had taken. I did not know the significance of it, other than it indicated some brain recovery was taking place. After his death, I wondered whether he was trying to tell me that he was not ready to die, and that I should have requested that he get treatment for his stroke. My father continued to give an occasional squeeze with his hand. The strength of the squeezes diminished quickly after midnight, and soon they were very feeble. I became upset by this and felt very guilty. I guessed, from my engineering background, that my father’s body had increasingly gone into survival mode, and that he could no longer waste precious energy on squeezing my hand. Years later, I was to learn that muscle cramps and even painful spasms result from dehydration, and it could be another reason why he could no longer squeeze firmly.

During one of the later lung draining procedures, possibly in the early hours of Friday morning or else late the Thursday night, my father resisted less, and the procedure seemed less traumatic. I don’t know if his body was instinctively conserving energy, or if my father had consciously tried to ignore as much as possible the highly irritating procedure as he may have known that forcible resisting would waste valuable energy.

In the early hours of the morning, perhaps 3AM to 4 AM that Friday morning, a frothy liquid started coming out of his mouth. His eldest granddaughter was with at the time, and she wiped his mouth constantly. She left at around 5 AM or so, whereafter I continued to wipe his mouth.

My father’s mouth used to be slightly open, with his tongue forward. He used to breathe through the mouth. Already on the Tuesday, his lips got dry, and some white substance, perhaps dried saliva, would get caked on parts of his lower lip. The nurses gave me special swabs on a stick, like cotton wool earbuds, but much larger than earbuds. The cottonwool part, or whatever it was made of, was impregnated with a mixture of , among others, lemon and glycerine. Already on the Tuesday, and this was just after the setback , my father did not like the swab against his lip. He would close his lips to try to prevent the swab getting onto his lips. I found it difficult to wipe his lips, but the nurses were used to this and they would wipe quickly and it would be over in a few seconds.

However, by early Friday morning, his lips were cracked, and his tongue also had dry white material on it in places, while in other places it was raw. I knew this was as a result of dehydration. Once again, I felt terrible, knowing that I had sentenced my father to this.

Around 5:30 a male nurse entered the room – he had come to wash my father. I pointed out the froth coming out of the mouth, the cracked lips and dry, raw tongue. The nurse noticed that there were no intravenous or nasal gastric tubes. He said the froth was a result of dehydration. He said he would clean the lips and tongue. The nurse seemed to have a cold look on his face, almost as if to say: “What did you expect? You should have known that dehydration is an unpleasant business”.

I then left, and returned perhaps around 8AM that Friday. My dad’s tongue looked better, but I was sure the cleaning process had been painful for him. I did not see any point in checking with the nurse, whom I never saw again.

During the day, people were constantly in the room, and at the bedside. My father’s breathing was still good, and his heartbeat, while weaker it times, would grow stronger at the times.

Barbara repeated her statements about my father’s treatment being tantamount to murder. While I now had serious doubts as to whether the withholding of water was correct, I knew it would be an uphill battle to get the doctors to reverse there decision. With my father’s body being run down by the starvation and dehydration and the untreated pneumonia, it was possible that further brain damage had occurred too, I reasoned. If water was restored, and my father did show some signs of recovery, the doctors would then be faced with treating a person who was now in worse shape when they decided he should die, one day earlier.

I waited until the young doctor responsible for my father’s “medical care” appeared. I told him that not only was my father still alive, but that at least at times, he was conscious and could make deliberate movements with this left hand and fingers. I explained to the doctor, demonstrating with my own hand giving squeezes, and the finger movement and curling the finger around another finger. I cannot recall now if I used both my hands, or one of my hands and the doctor’s hand. He refused to believe that my father was conscious at times. He dismissed my father’s hand and finger movements as involuntary actions. I do remember that he had a slight smile while we were talking. Clearly, he did not taking me seriously.

The weather was hot. The room was small, with several people in it at the same time. Mercifully, there was an electric fan, and we directed the flow of air onto my father, to cool him somewhat. Sometime in the afternoon, while Barbara and I and Liana were there, together with others, we first saw tears coming out of my father’s eye. This greatly upset Barbara, who wanted the tears to stop. I told her to leave Daddy alone. I said stroke patients get frustrated by their helplessness and powerlessness, and sometimes cry easily as a result. While this is true of many stroke patients (even years after they got the stroke), until then my father had not shed any tears. So deep down, I wondered whether his tears were as a result of him finally realising that his own family had abandoned him to die, when he was not ready to die, and without us having him medically treated, apart from nursing comfort care (turning the body, draining the lungs etc.).

His tongue again got the white substance on it. I did not want to use the lemon and glycerine swaps any more, so I used a conventional earbud and dipped it in water. I positioned it above his open mouth, and lowered it towards his tongue. Before it could tough the tongue, Shortly thereafter Liana asked me to taker her to the place she was studying at, as she had to study for examinations that Monday. One the way to her lodging, we discussed the closing of the mouth around the earbud. Liana said she also witnessed it, and I made her feel very bad. She also pointed out to me that pneumonia is very painful, and my father had a bad form of pneumonia. She said as he was not getting any painkillers, he was probably in pain. Driving back, I resolved to request that my father get water an painkillers. I first asked the nurse in charge how long someone like my father could survive without food and water. She had a kind of angry look on her face as she said: “ it can carry on like this for days”. I then went to my father’s room, and announced to the family members present:” I want Daddy to get water and painkillers.”

I will not relate here what happened next – that is part of the police investigation. But I left the hospital without succeeding to do what I had set out to do. I thought if my father survived the night, I would ask my brother and Barbara if we could not somehow get the hospital to resume hydration, and to provide painkillers. I had had only a few hours sleep since the Sunday night, as I only slept one to two hours per day. So I expected to sleep a long time, and not to wake up until daybreak or so. At around 2:30-2:35 AM, I woke up very suddenly. It was as though a light shone in my mind. I was wide awake, and I did not feel tired at all. Instinctively I knew that my father had just died. Minutes later we got a phone call from my elder sister at the hospital saying that my father had died.


Postscript


My father was a great man who was widely respected by many people. He fought many legal case, perhaps thousands over a 50 year legal career, many of cases these for the poor and the vulnerable. But in his final fight, he fought alone, while in pain, with massive infection, with brain damage, and without food and water. Barbara’s daughter witnessed his final brave struggle at the hospital. Her funeral notice in the newspaper stated as follows: “Dear Pa, to one of the strongest and bravest men I’ve known, …” Despite a brave struggle, it was a fight he could not win. He died like a dog. A clairvoyant later told me that my father died very unhappy. This confirmed my worst fears, about his tears hours before his death.

A couple of days after the funeral, something told me to check on Internet whether it was true that rehabilitation for left brain stroke victims is very difficult. On the first page of a Google hitlist for “massive stroke” I came across the website www.strokefamily.org. It is true that without appropriate methods, rehabilitation of left brain stroke victims can be very slow, and success is then uncertain.Many people never learned to speak after such an illness. However, a person developed an appropriate method starting in the early 1970s, and within a few years, her father had learnt to speak. The method was refined, and since 1985, over 20 000 adults have been assisted with these method.

So much for the professor’s statement about requiring “unlimited financial resources”. The Intern told us something similar, but maybe he had studied under the very same professor.