SHOULD I KNOW/SHOULD YOU TELL?
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Should you tell a person with a life-threatening disease the truth about the situation? From the questionnaire, 90% of the students said it should be done directly, no one said it should be done indirectly through hints etc., and the rest said it should not be done at all. The answer then is emphatically YES! Besides, it is almost impossible to keep the information hidden unless a conscious effort is made by both parties. When a person gets a pimple in a very short time it is discovered. If you developed a tumor it will be detected by the brain. There are so many clues about the issue it is hard to keep it secret. Doctors may act and talk differently to the terminally ill, charts can be read by the patient, and visitors will act noticeably different. When one visits a patient with a broken arm the topic of conversation will center around the break, such as how it happened, when it can be fully utilized again, etc. If a patient with a life-threatening disease is visited the last thing discussed will be the medical problem. The topics discussed will be more mundane such as the weather. Any discussion even remotely related to life span will be absent from the conversation. The conversation is so skewed it would take a person out of touch with reality not to recognize the change. Granted, not all people are going to admit it to others or even to themselves, but the question should not be, "Should the person be told?" but should be, "How should the person be told?"
There are general considerations for informing someone of such an important issue. There should not be one inkling of a lie connected with the process. The gravity of the condition should not be minimized. But it should be done gently and with compassion. It should be done without eliminating hope for a cure. Removing hope may promote a more rapid slide toward death. And, you should let them know the facts in a way that they come to understand that they will probably live past any important and immediate goals. It would be cruel to suggest to a pregnant women her life will probably terminate before the birth of her baby. People have an amazing ability to will themselves to live in order to meet an immediate goal.
Much of what is known about the terminally ill can be attributed to Elizabeth Kubler Ross, M.D. She is teh author of the famous book, On Death and Dying. Her research, along with the help of a group of hospital theology students, was directed toward studying dying patients to find out what they thought about, and how they reacted to their own death. She came to many firm conclusions. One of them was, "I believe the question should not be stated, 'Do I tell my patients?' but should be rephrased as 'How do I share this knowledge with my patients?'" She suggested it be done without promoting undue anxiety, using cues from the patient to start, and make sure the patient really wants to face the reality of the situation. Also, they should not be lied to! The patient should also understand that everything possible will be done so hope will not end.
When students were asked what behavioral changes they would undergo if they were told they had a short time to live there was little doubt about their answers being accurate: Some would stop going to school (although one said she would not stop completely and she would probably go once per week); some would cancel college plans, some would party, and some would travel. To the specific question, "If you could do one more thing before you were to die, what would it be?" the written answers were divided between travel (28%), sexual activity (25%), family activities (22%), and miscellaneous comments (25%). Some of the actual responses collected over the years under each category are listed:
Studies have been done to determine what people actually do when confronted with a life-threatening disease. It was found most people usually do not make any large behavioral changes. Rarely do they do any of the things related to the students' comments above. Their personality remains relatively intact and they remain true to it. There may be an initial severe reaction to the news but that is necessary in order to slowly absorb such an impact. As far as religion is concerned, the majority of people use it with the terminal disease as they did before.
Fight, flight, or freeze - these are the three ways of reacting to bad input. If you confront a deer in the woods they will usually run for a short distance (flight) and will then stop when they think they are out of harm's way (freeze). Deer rarely will attack - they are too timid. The first reaction a person would have to terrible news would be a type of denial. The denial is really a manifestation of the fight, flight, or freeze reaction. The fight might come in the form of doubting the doctor to the point of demanding a second opinion, seeking out vitamin or drug therapy, thinking the x-ray department mixed the plates up, etc. The flight might come in the form of fugue reaction such as going on a trip, alcoholism, etc. The freeze form of denial would include those actions that would appear to be an acceptance of the diagnosis. Although there might be a few people that would just accept the bad news and do little about it, many would find it is really a time where thoughts are being collected and future actions planned. Denial is usually considered the first stage of the dying process, as was so aptly described by Dr. Ross.
Sometimes denial interferes with normal human communication. When my step-father-in-law died of bone cancer some years ago he was in denial with me. I was only able to make small talk with him during his last days. The feeling was in the air that his death was a taboo subject. For that reason I was forced to pretend he was to live which prevented me from expressing remorse, saying goodbye, or letting him know I loved him and would be with him in the end. Denial sometimes forces people into a big lie. It is not advisable, however, to simply break denial down because it sometimes offers a protective facade for thought reorganization.
The next stage in the dying process is usually filled with anger. This is where people suddenly realize they are dying. They are royally ticked off! Tthere may be a venting of the emotions involved. Blame for the situation may be directed toward the doctor, rescue squad, spouse, etc. The patient may resort to physical violence. It may be difficult to please the person. Nothing is appreciated. It's a real turn-off and may increase loneliness when friends resort to avoidance. The anger stage causes people to react in ways that are considered unbelievable at times!
The bargaining stage is next. It is usually due to guilt. It is the stage that is the hardest to detect because it is oftentimes done in a private manner. "God, if you will remove the cancer from my lung I swear I will go to church every day for the rest of my life." In this example the bargaining is obvious. The guilt is based on the previous poor church attendance in the past. In one study it was found the patients that are given a new lease on life usually do not carry out the bargain for long.
Depression follows. This is the saddest of the stages. The realization finally sank in about the gravity of the situation and the patient becomes very depressed. Dying in depression is a very unpleasant experience.
The final stage is acceptance. At this point hope is almost absent. Death is close. News is unimportant. Listening to the birds outside, living with memories, studying a flower, holding someone's hand are important. Knowing someone will be there at the very end is extremely important. It is a very quiet stage.
Passing through the stages is not always a smooth progression. Some get stuck in one forever. Some will go from one stage to another only to return to that stage at a later time. Some will be in one stage for one person and revert to another stage for someone else. You might have denial with one visitor and limit the conversation to mundane matters, and with someone closer there might be acceptance where the disease can be freely discussed.
These famous "five-stages of death" are really the five stages of much of our behavior when we react to change. For example, a kid does something that is so bad they are grounded for two weeks buy the parents. Watch their reaction. They first will go into denial, saying things such as, "I don't believe you could actually ground me for what I did," or "You must be kidding!" When the kid realizes you are serious they might go into such a stage of anger there will be doors slammed, furniture broken, and very course language directed toward the parents. Once that stage passes there may be many attempts to bargain away the sentence: "If you change your mind about this silly grounding, I will promise to never do that again and I will wash the dishes everyday for a month." If the parent doesn't fall for the scheme, it will now be apparent the grounding will take place. Depression results from being confined to the room, not being able to see friends, go out, etc. But, in due time, measures are taken to make the stay as pleasant as possible. There might be a paper that has to be written and the time could be used for that. There is always the phone and the TV to relieve boredom. Acceptance makes the journey through the grounding to be less distasteful.
Treating alcoholism has parallels. Alcoholics typically deny they have a problem and they continue to drink themselves into oblivion. Getting them out of the denial stage can be extremely difficult. Getting them to vent the anger properly, live with the depression, and finally reach acceptance of their problem is equally difficult.
It is important to go through each dying stage so you are "playing the game properly." If you were grounded because of a bad deed, and your mother told you were grounded, it is expected that you will react according to the stages. If after grounding you said, "No problem - I wanted to be grounded and that's why I did it.", there would follow a few other penalties that would surely bring out the anger, bargaining, and depression. A good reading supporting this is page 54 to 56 of, ALL I EVER WANTED TO KNOW I LEARNED IN KINDERGARTEN.
Survivors go through the same five stages when they find out a close person is dying. Hopefully they will also be able to get to the acceptance stage either before or within a reasonable time after the death. Stories abound where individuals, families, and even societies get fixated on one of the stages. Here are a few examples:
I attended a birthday party for an older person and met a woman that had consumed too much liquor. We were engaged in small conversation when I asked her if she had any children. She replied she had 4 children. When asked the sexes she said she had 3 boys. When asked about the girl the woman became unnervingly speechless. We stared at each other for about 15 seconds, an unbelievably long interval. Her eyes started filling with tears and it appeared she was about to have a breakdown. My wife interjected with the comment the daughter had passed away a few years before. The conversation returned to mundane matters. I found out afterward the daughter had died several years prior from a drug overdose. Here was a mother that was consumed by denial and guilt to the point she was a very unhappy (and probably unproductive) person.
We had a girl in school whose father suddenly died at home. The girl was called to the school office and abruptly told the tragic news. I was working in one of the rooms when she burst in, white as a sheet with panic written all over her face. She could hardly talk and did not know which way to turn. Denial was taking the form of panic and shock! Coupled with this, at the time of the father's death the local rescue squad was called. They would not respond because the house was in another jurisdiction. A referred was made to the proper rescue squad. The condemnation of the refusing squad was belligerent. The death was blamed on them. The entire family was enraged with anger (from the death) and it was wrongly being aimed at an innocent party!
Two other student-related anger examples: A woman went to church after a death had occurred. The congregation began singing a hymn. The hymn happened to be a favorite piece of music the deceased enjoyed. The woman thought the congregation was doing it in relationship to the death an became so enraged she stood up and starting yelling for them to stop, which they did. She had to be taken from the church. The second was a man who had a relationship with a woman. The two were intimately involved for several weeks. The woman had to fly to another location and, before boarding the plane, was given a gift from her lover and told not to open it until she was in the air. When the package was finally opened it contained a miniature casket with a note on the inside that read, "I have AIDS." Sometimes when a person contracts a disease such as AIDS, Herpes, etc. a rage is developed that is directed toward the opposite sex, and the medical profession. Some of those infected want to pass it on to everyone else so it becomes "normal."
One of our local doctors misdiagnosed a cancerous condition. Following the patient's death many months later, the son of the deceased publicly condemned the doctor during the eulogy. A statement was made that was similar to, "It's because of Dr. -------------- that my father is lying in this casket behind me!" There was even more said that was the direct result of a survivor's.anger stage.
The Space Shuttle Challenger exploded during blast-off. A colleague of mine came to my room in school and announced what had happened. I asked for the punch line (denial). He convinced me it had just happened and he saw it on television. During the following months there was national blame (anger) being placed on Thiokol Chemical Corp. because of the faulty seals, and on NASA for allowing the Shuttle to lift off in extremely cold temperatures. National anger can lead to a lynching!
A sad condition concerns the Missing In Action (MIA) members of the armed forces. There are many Americans that were lost in South and North Vietnam, as well as in Laos. The relatives cannot accept death as a reality. They have no body or other tangible evidence. For that reason they are locked in the denial stage with temporary excursions to some of the other stages. That's a no-win situation which can lead one to the anger stage very easily. The government, senators, and the armed services may be blamed for not doing enough to recover the MIA's even if it means bringing back only a body. There is probably lot's of bargaining going on, usually with God, in order to attain a solution. There can be life-long depression. There won't be acceptance. And, without that there cannot be normal living conditions.
One girl's father died of nose cancer. He smoked and blew much of the smoke out his nose. He had an operation which resulted in the removal of most of his nose. He went from not knowing there was a problem to his death in about one month. They were considering establishing a law suit against either the doctor or the hospital. To add more to the grief, at the funeral she experienced several caustic remarks made by relatives. This unvented anger unsettled her.
How do you think some people would react to the following scenario: The disease is diagnosed as terminal and both the family and the victim go through the 5 stages of dying together. They have had several months to do that and it was a very emotional experience. Finally most achieve acceptance. At that point another visit to the doctor reveals the condition mysteriously changed and it is no longer fatal. In fact, it is completely curable. Everyone lives happily ever after? Not always! Because everyone is burned out emotionally, and because they have been on that long and erroneous journey, the reaction oftentimes is intense anger. They are steamed! Sometimes the anger is hidden. Sometimes it is directed toward an outside object such as the doctor. Sometimes, and this is hard to believe, it is directed toward the victim. There are cases where spouses are so enraged they say and do horrible things to the ones they loved and the end result was the suicide of the patient. It would be similar to convincing someone you are dying even though you are not - and a joke like this is rarely played out in our society - and letting them become emotionally involved, then announcing it was all a hoax.
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