Above and Beyond
By Kathy Negri, RN, MBA
Monday October 20, 2008


My brother-in-law Claude was a vivacious and high-spirited man who lived life to its fullest. Despite his limitations and lack of material resources, Claude always had a positive outlook on life. He never let the hardships of life get him down. Always with a smile, Claude's exuberance lit up any room that he entered.

On December 23, 2007, Claude was diagnosed with Lou Gehrig's disease, a degenerative neuromuscular condition. Although he understood the magnitude of his illness, Claude decided that he would fight the battle with the same "gusto" that he had fought other life challenges. Together, my husband, Claude's brother, and I fought the battle alongside him.

Within three months of his diagnosis, Claude's health declined rapidly. The muscles in his legs, arms, and hands became progressively weakened, which left him partially paralyzed. In addition, his respiratory muscles and diaphragm failed to function to their capacity and Claude required oxygenation by artificial means.

While at home, Claude developed pneumonia and edema in both lower extremities. My professional assessment indicated that we would no longer be able to care for our loved one in the home. With the assistance of EMS, we headed out for the Good Samaritan Hospital Emergency Department in West Islip, N.Y. As Claude was taken out on the stretcher and as he waved good-bye to my daughter, his eyes indicated that he knew he would not be returning.

Upon arrival at the ED, we were met by a team of concerned and compassionate staff who attentively provided emergency care. The respiratory team inserted an endotracheal tube and put Claude on a ventilator. Once stabilized, he was transferred to the ICU, where he would spend his last three months of life.

In the ICU, Claude remained sedated for approximately two weeks. In the interim, the nursing staff carried out its rigorous routine of vital signs, AM care, suctioning, drawing blood, administering medications, and gathering information about his healthcare needs. The nursing staff worked diligently with other members of the healthcare team to provide quality patient care.

After three weeks in the ICU, the ET tube was removed and replaced with a tracheostomy tube. Claude would be on a ventilator for the rest of his life. A feeding tube was also inserted to provide long-term enteral nutrition. Claude was no longer sedated and was able to make his needs known. He was mentally aware of his surroundings and what was happening to him.

Although he was receiving the best of care, Claude lost his "zest" for life. He could not wake up another day only to find himself confined to a hospital bed and not having the capacity to carry out his daily activities of living. He told us, "It's hard for me to live like this and know there is no cure for Lou Gehrig's disease. I lived a good life and I am ready to move on to the next phase, where there is no pain and suffering." With this said, he requested to be removed from the ventilator and other artificial means of living.

Assuming the role of patient advocate, the nurses contacted the hospital's administrator and made him aware of Claude's request. They began to advocate for Claude's right to make his own decision about being terminally weaned. After much consideration and a thorough psychological evaluation, Claude was found to be competent and capable of making such a decision. The administrator decided to honor Claude's request.

Claude's last wishes, before being terminally weaned, were to go outside, have a meat loaf dinner, a can of beer, and visit with his family pet. This was a huge endeavor. After all, the nurses had never taken a vented patient outside before. The nurses worked collaboratively with Claude and came up with a perfect plan.




On June 27, 2008, Claude's family and friends convened in the Garden of Meditation, where they anxiously awaited Claude's arrival. It was a beautiful, sunny, and hot summer day. The garden was peaceful and contained a statue of the Blessed Mother surrounded by a pond. The greenery from the shrubs added life to the garden. Asia, Claude's pet beagle, was also in attendance.

To our surprise, Claude was escorted to the garden by an entourage of nurses, physicians, respiratory therapists, and even a chaplain. Each person carefully guided and maneuvered various life-supporting equipment. Claude was pleased and happy that the staff was able to accomplish what was thought to be impossible.

While in the garden, the staff took pictures so that the family could have them as keepsakes. It was an intimate and spiritual moment. Through the song service and spiritual readings, there was sadness and crying; we knew within hours Claude would no longer be with us. After family and friends expressed their love for Claude, he expressed how much he loved us all and how appreciative he was of the nursing staff who took care of him during his last days. He promised to watch over us all like a guardian angel.

Twenty minutes later, Claude was back in his room. Awaiting him was a delicious homemade meat loaf meal prepared by his favorite nurse. And to wash it down was a cold glass of beer. Claude was extremely happy — he had not eaten in three months. He could not believe that the nurses honored all four of his wishes. While drinking beer with his brother and nephew, he listened to his favorite jazz CD.

Other family members from out of town arrived to say their goodbyes. One cousin brought childhood pictures of him and his brothers. Claude smiled while they reminisced about the old days.

Shortly afterwards, Claude motioned to his nurse that he was ready for the weaning process. By that time, the priest had already arrived and given him his last rites. The nurse hung the morphine drip and carefully titrated it to ensure Claude's comfort. He was taken off the ventilator and a trach collar was placed. Claude took one last look at everyone. He especially focused on his brother and father. Then, he closed his eyes.

In life, we are given small blessings here and there to get us through the hard times. The staff at Good Samaritan Hospital was able to bless Claude at the end of his life with the things he wished for and loved the most — loved ones, good food, and a beautiful day to enjoy it all.



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Kathy Negri, RN, MBA, is assistant director of Patient Care Services at Southside Hospital, North Shore-LIJ Health System, Bay Shore, N.Y.
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