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December 22, 2014 / 30 Kislev, 5775
 
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The Hidden Agenda (Part Two)

Last week I wrote about how some well-meaning professionals can manipulate the situation in order to get you to do what they feel is in your best interest. I retold Brocha’s experience when she was agonizing over whether or not to place her chronically ill husband in care. Brocha was haunted by what she thought she had been (deliberately?) told. Not able to check it out, she allowed the (mis)information to determine her decision. I also told Joe’s story, according to him, of how he was pushed out of a rehab facility before he felt he was ready to leave. This week I want to relate more stories told to me by the chronically ill and their families. Stories in which these people feel that they too, were manipulated by the system to do what was not – in their opinion – in the best interest of their loved one.


Ada had been chronically ill for years. As she aged and her disease worsened her hospital stays were longer and she was admitted to the hospital more frequently. Lately, she often referred to the hospital as her second home. The nursing staff, doctors and orderlies on every floor knew Ada. She was no stranger to the Intensive Care Unit, either. Ada had always told her family and her doctors that she did want every heroic measure taken to keep her alive, no matter what.


The last time she entered the hospital she had difficulty breathing. The doctor asked Ada’s husband how he felt about a DNR order. The doctor’s prognosis was that Ada’s breathing would just get worse and worse, and the chronic illness would not allow for recovery. The disease was just taking over the body.


Ada’s husband again relayed Ada’s wishes to the doctors, that she be kept alive, no matter what. He told the doctor that he wanted her wishes honored. At that point, the doctor reminded him that as long as Ada was lucid a DNR order was her decision. The doctor thought that perhaps with no chance of recovery, Ada might have changed her mind about choosing to prolong her life, no matter what. The doctor was determined to discuss the options with Ada herself.



Ada’s husband requested to be present at the discussion. He was concerned how the doctor, with his own point of view, might word the discussion. After all, the hospital had a shortage of beds, and


perhaps the doctor didn’t like dealing with patients who could only get worse and never be cured. And, to boot, their insurance was almost used up for the year. Ada’s husband liked to think that these things didn’t enter into patient care, but he felt they had to play a part.




The doctor told him he certainly was welcome to be present, but his schedule didn’t allow him to name a specific time for the meeting. That would depend on Ada’s state of mind.


Widowed, Gav had given his young son his medical power of attorney. Gav’s situation was similar to Ada’s. The difference was that Gav was unresponsive and could not make decisions for himself. Just recently, Gav had become very frail, as well. The doctors had given him just weeks to live, even before this new infection had set in. Gav’s young son talked to the doctor about his father’s desire to have everything done to keep him alive. The doctor explained that in his extremely frail condition, should his heart stop, CPR would break ribs and cause more harm than good. He convinced the young man a DNR order was in his father’s best interest.


Gav passed away a few days later. His son is still wondering if his father would have lived a little longer if he had made a different decision. He knows the doctor gave him the best advice from a medical perspective. He just wonders what a doctor’s outlook entails.


Would the doctor have suggested the same thing if it was his father that was lying there? Meanwhile, he mourns his father and knows he would feel guilty, no matter what his decision would have been.


We all have tunnel vision. We see things and decide things based on our knowledge and experience. When dealing with the chronically ill, doctors often see things differently than family. This may be especially true at the last stages of chronic illness. This does not mean that we are necessarily being manipulated by the system or by the doctors. But it does mean that two people rarely see things in the same light.


That’s why, whenever possible, a trusted second opinion especially from someone with experience with chronic illness might be wise. Consulting a rav who specializes in these types of decisions is a necessity. Their input may not change the course of action you choose, but it may go a long way to giving you peace of mind later.


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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.

Dear Ann,

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.

Dear Ann,

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-hidden-agenda-part-two/2005/12/21/

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