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April 21, 2014 / 21 Nisan, 5774
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Posts Tagged ‘Intensive Care Unit’

The Hidden Agenda (Part Two)

Wednesday, December 21st, 2005

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.


Balancing A Simcha And A Crisis: My Story

Wednesday, January 5th, 2005

For more than a year now, I have been relating stories from and about well spouses. When these stories reflected a common experience, I wrote about them.

Among the many interviews I did and the stories I received were stories about simchas. These were simchas made in families where one of the spouses or parents was chronically ill. The stories illustrated every gamut of human emotions. They told about appreciating having a simcha, trying to enjoy every joyous moment, and what helped the families and what caused sorrow and anger.

I had put all the stories away to look at for a common thread at a later date. It was only recently, when my son was married, that I saw their experiences reflected in my own.

I’m going to spend the next few articles discussing simchas. I have learned much from others’ experiences and this has helped me handle the events surrounding my own. But first I’d like to share my own experience as a well spouse making a wedding for my son.

My son and his bashert were recently married. My husband had been in the hospital for two years (minus four months when he was home from Pesach till August). He was originally admitted because of pressure sores from his wheelchair, but what should have been a six-week cure turned into two years due to complications. His doctors assured me he would be at the wedding, and things certainly appeared to be progressing in that direction. The doctors were even exploring the possibility of him being home for Shabbos where I would be hosting my 20 out-of-town guests for the three Shabbos meals before the wedding on Sunday.

A week before the wedding, at eight a.m., my phone rang. The nurse at the other end identified herself and told me my husband was suddenly not doing well and I needed to get to the hospital immediately. It took a few moments for my brain to register what she was saying, and what immediately meant. I raced to the hospital and when I got near his room, the doctor intercepted me and took me aside. The first thought to go through my mind was that I was too late. B”H that was not the case. She simply wanted to let me know what was going on and what I was about to see.

The doctor told me that my husband was having trouble breathing and needed to be intubated and put on a respirator. I pushed her for more information and forced her to be more explicit. She told me he had a 20 percent chance of not pulling through and it was doubtful that he’d ever get off the respirator. When I entered his room, I saw that his mind was clear. He understood what was happening to him. He was surrounded with medical personnel. They were getting ready to take him to intensive care. They needed my permission before they could start the procedures.

A week later, my son was married. He had arranged a hook up to the Intensive Care Unit so that my husband could hear the ceremony. (They tell me a man in a coma in the next bed opened his eyes for the first time when the chazzan began to sing.)

We asked our guests to help make the wedding a “simcha b’simcha” (a joyous occasion full of joy) and give to the bride and groom the wedding day they deserved. Based on the stories I had collected and a well spouse friend’s advice, we (like many others before us who juggled tragedy and joy at the same time) read a note from my husband asking that no one discuss him tonight but focus instead on making the wedding joyous and special. And for the most part, people acted in accordance with our wishes. The wedding was beautiful and fun.

Our out of town guests, including my children and grandchildren, have left. The usual low that comes after a simcha, after everyone leaves, has settled in. My husband, as usual, has defied the doctor’s predictions. He has been downgraded to Intermediate Intensive Care, and with G-d’s help, is now off the respirator for half a day. They fully expect him to be completely weaned of it. And so I look forward to many more years as a well spouse.

I am truly thankful for the stories of other well spouses whose experiences in juggling publicly and privately two opposite emotions at the same time helped me through my experience. I look forward to sharing their stories with you in the next articles. I hope they will be as helpful to you as they were to me.

Printed from: http://www.jewishpress.com/sections/magazine/balancing-a-simcha-and-a-crisis-my-story/2005/01/05/

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