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We are in a new phase of medical treatment – patient participation. We now know doctors are fallible and the medical system not all-knowing. Some, particularly younger doctors and nurses – want their patients to be part of the process, involved in decision making and members of the team.
With access to the Internet, we sometimes can give our doctors information they don’t have as yet, or argue things they don’t agree with. That’s what team members do. But this team is exclusive and often you can only remain a member if you agree.
Dissention isn’t always welcome, particularly in a hospital setting. When you disagree with doctors, challenge nurses, and generally are not compliant about your care, you may be labeled a “difficult patient.” However, accidents happen even, or especially, in hospitals. We have all heard horror stories about mistakes in medications, wrong diagnoses, and even procedures done on the wrong patient.
It is important to be vigilant about your care, even if you are labeled difficult. This is particularly true for sufferers from chronic illnesses who spend more time than not in the hospital.
Shlomo had been hospitalized for a long time, suffering from complications of his chronic illness. The nurses brought his medications to him each day. Each day, he checked the pills in his little cup before taking them to make sure they were the right ones. This screening of his medications did not please the nurses.
Shlomo always inquired about any changes in medications and dosages to make sure he was getting the correct drugs in the correct amounts, and to be on guard for any changes he was not informed of. They called him a difficult patient, very non-compliant. One day, there was a pill in his cup that he was unfamiliar with. He asked the nurse what it was. It turned out that someone had made a change and was giving him a drug that he was deathly allergic too. If Shlomo hadn’t inquired, he would have had a severe allergic reaction to his new medication.
It was summer when Sharon was hospitalized. She too was suffering from the effects of her degenerative disease. Sharon had learned from experience to be wary in hospitals and to double-check anything that seemed not right. She too was labeled a “difficult patient”. One hot day, Sharon asked the nurse for water and was given a pitcher full. Sharon detected an odor from the water and questioned the nurse about it. She was assured over and over that there was nothing wrong with the water. In fact, she was told, the water machine had just been cleaned.
Sharon refused to drink the water even though she was very thirsty. In a little while, they came and took the water away. It seems the water machine had been cleaned but had not been rinsed from the cleaning solution. There had indeed been something toxic in the water.
Stanley was also “a difficult patient”. He too had been hospitalized repeatedly for medical problems resulting from his chronic illness. Perhaps because he had been in the hospital a long time, or perhaps because he was not considered in crisis, or maybe just due to overcrowding, Stanley felt that it took a long time for someone to come when he pressed his call button. He began to take it personally.
One morning, in great discomfort, he pressed his call button repeatedly. After waiting over 30 minutes, with his discomfort getting worse, Stanley used his phone to dial 911 for assistance. He explained to the 911 operator that he was in the hospital, in crisis, but no one was responding. The 911 operator called the nurses’ station and Stanley quickly got the assistance he needed.
It is hard for many of us to be assertive. It is even harder when you are in the hospital and subject to others for your care. Most of us want to be “nice”. We want the nurses and doctors to “like us” in hope that they will treat us nicely. We don’t like to make waves, create a disturbance or challenge the experts. But particularly in a hospital situation, if you are not an advocate for yourself, who will be? Your family cannot be there 24/7. Mistakes happen.
If you suspect something is not quite right, question it. You may be labeled a difficult patient, but you may live longer and healthier as well.
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When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.
Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.
Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.
I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.
Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.
Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.
Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.
Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.
Printed from: http://www.jewishpress.com/sections/magazine/the-incorrigible-patient/2004/10/13/
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