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Start the most difficult conversation American isn’t having- the conversation about our end of life preferences

Stephanie’s Story

Accompanying Essay: Margaret, Peace at Last, by Noreen B. Coussens

The trees in the hospital lawn began to look as stark as my hope for Margaret. The leaves abandoned the branches, separate now forever. Margaret’s life had evolved; it was once full with many experiences and friendships blossoming. As the leaves became full and green, so did those solid friendships. Times of stormy weather, the wind blew the changes through her life. Still sustaining and holding on. Gradually, as life would have it, the leaves of friendship evolve- some dying off, others becoming more brilliant with new shades of color. Now, the leaves- like friendships- have abandoned this tree named Margaret. Margaret struggling through her last storm, only to be reunited and begin a new life. The bare tree will remain as a memory. Next spring, this tree will begin to bloom with tiny buds. Although that tree will begin anew, Margaret is not part of this rejuvenation. Her life is now that of an angel.

Like many elders, Margaret had limited knowledge of health care. Ironically, she served as a nurse’s aide in military hospitals during World War II. Margaret saw the face of pain, grimacing for relief. She knew too well that relief would arrive in the form of death. This aide held, prayed for and cried with wounded soldiers. Medical care was primitive in comparison to the technology of today. There were no beeping machines taking the pulse of a patient. No sounding alarm when the pulse stopped and life ended. People died, tragically. This was the reality of war.

Fast forward to 2010, and technology can prolong life by providing nourishment, medication and breath. The human body, no matter how frail, can be kept existing, heart beating with all of the modern medical inventions. Inventions have become the crux of aging in modern times. A pacemaker will force the heart to beat at the designated rhythm prescribed by a physician. A feeding tube can be placed when swallowing food is no longer possible. A mask will force either air or oxygen into a person’s lungs so that breathing can continue. All bases are now covered, right? So wrong.

The term “person” has become a system of mechanical devices. Heart, lungs, GI system all part of this mechanical entourage. The soul of the person can be maintained only through a life that is meaningful. Can a life be meaningful if it is being mechanically kept alive? In the case of Margaret, at 91, her life has been lived. She has experienced joys, sorrow, tragedy and outliving most of her close friends. Margaret occasionally questioned the purpose of life beyond 90 years. Baking Irish bread, a daily activity, was no longer possible. Swallowing that cup of tea caused her to choke. Falls became increasingly common. Conversations were better in person because she could see how lips were moving and try to interpret facial expression. The tiny strained voice reflected the tiny hunched over person Margaret had become. She wondered what her purpose was now. She could still cling tightly to her Rosary, one of the few consolations left.

My last visit with Margaret in her home was to discuss hospice support. Margaret’s son was no longer able to keep her safe. She had several known and unknown falls. The fear of a fall leading to fracture weighed on his mind. He was not aware of resources available, nor was he able to be the caregiver much longer. Our conversation was put off as Margaret had expressed the desire to go to the hospital. She believed that if she had her throat dilated, her ability to swallow would be restored. Perhaps she would feel stronger and be back to normal. “But wait, before we leave, I want a cup of tea and a piece of soda bread.” Dutifully, her son provided. As Margaret attempted to swallow, she became distressed with choking and vomiting. Another sip of tea; another episode of choking.

An ambulance was not an option. It would not bring her to the hospital of choice. Margaret sat in the wheelchair and was carried by her son into the seat of the car. Her last exit from her home. Upon arrival to the hospital, the reality of Margaret’s health was confirmed: pulse 34, blood pressure 73/40. To me, it was obvious. Margaret was beginning her final journey. My hope was that this would be a peaceful transition into the heavenly life that all of those Rosaries were offered for. Margaret outlived so many others, her mind was still intact. What a beautiful way to leave this world.

After allowing the emergency room team to do their assessments and have the necessary discussions with Margaret’s son, I checked in on her. The whisper and smile were such a struggle. I hesitantly introduced myself and explained that I was in the field of geriatrics. “Oh, well, she’s going for a CT scan of the brain.”

“Why?” I asked, wondering if I had missed something.

“The doctor wants to make sure she didn’t have a stroke.”

“Why would she think that?”

“Well, you know, all the falls. I’m just following orders.”

I have abundant respect for nurses. “Did it occur to the doctor that she is so weak that she cannot support herself, and this is why she is falling?”

“You would think, wouldn’t you?”

My dream of a peaceful departure for Margaret was ending. Waking up to the reality that Margaret was about to become a victim of being kept “existing” by the mechanical list of medical interventions. First was the oxygen mask, forcing air for her to breathe; then came IVs for fluids, and to offset chemical imbalances from the heart being so weak. Admission to the intensive care unit. Again, the nursing staff did their best, while also following orders.
I believe that even in a weakened state, people can attempt to make their wishes known. Margaret attempted to pull out the IVs and kept removing her oxygen mask. This led to physical restraints- on a 75 lb, 91 year old. Discussions with her son were held several times a day. He was waiting for her to “give up,” as he believed she still wanted to fight. Her attending physician, who claimed to know Margaret so well, decided that Margaret was not ready to die. She wanted to live.

So, the decision was made for Margaret to have a feeding tube inserted. Once that “worked,” a pacemaker would be put in to keep her heart beating regularly.

I received a call three days after the ER admission from Margaret’s son. He explained all that the doctor had in mind. When he mentioned feeding tube, my Irish temper came into play. I expressed my objections, voiced as concerns. I could not let this happen. But this was not my mother. My mother, however, was Margaret’s best friend. I relied on this logic: if it were my mom, I would not allow any more mechanical things to keep her “alive.” What else could I do?

I called the hospital and asked if they had a chaplain or social worker in the ICU. I explained that although I had no direct say in Margaret’s care, I felt that her son was not aware that he DID have a voice.

Eventually, I was referred to Bernadette, the palliative care nurse. Divine intervention, she was from Ireland, just like Margaret! I explained who I was and expressed my concerns. Yes, Bernadette was aware of this situation. Although HIPAA prevented her from telling me anything, nothing prevented me from talking and her from listening.

Bernadette did speak to Margaret’s son. He called me to tell me about this wonderful lady trying to help, but he was still not convinced that mom was ready to let go. Oh please God, a sign.

Did I mention divine intervention? Twice in 48 hours, Margaret’s son called. “They were ready to begin putting the feeding tube in, and when they removed the oxygen mask, she looked at me and said, ‘for God Sake, I’m 91 and a half years old, please let me go.’” Margaret had spoken loud and clear.

I remember this moment like yesterday. “I am on my way, and everything will be ok now. Her suffering is over.”

Margaret finally had that mask taken off. The restraints were released. She was still anxious and agitated, but medication was given with kind, gentle hands to help her calm down. Her niece prayed with her in Gaelic. The rosary was recited with loved ones surrounding Margaret in prayer. She held a cross that she requested be in her hands on her death bed. Five hours after being freed from physical restraints, Margaret was freed from the struggles of this world. May she rest in peace.

Noreen B. Coussens serves as President and Geriatric Care Manager at Elder Guide, Ltd.