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.