Last Word: Important Information About Human Rights At the End of Life.
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Last Word - Tercia Soares Sharpe
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Introduction
I remember, to this day, when my first patient died. She was 14-years-old, and had a very serious heart disease, Tetralogy of Fallot. She had undergone several surgeries and now her condition had deteriorated and she died. I was very upset and could not stop crying; her mother was the one comforting me. This happened in 1979, at my first job in a hospital after graduating from college, in the Intensive Care Unit (ICU) at Silvestre Adventist Hospital, in Rio de Janeiro, Brazil.
I would always cry when my patients died, and I would go to their funerals, thinking that, maybe, with time all of this crying would go away.
At that time, I saw death as the result of a disease.
Years went by, and I remember taking care of an advertising executive preparing to undergo cardiac surgery in the ICU at the Albert Einstein Israeli Hospital, in São Paulo in 1992. He was relatively young, maybe in his early fifties, and he was very optimistic about his recovery. When I returned to work the following day, I saw his wife in the waiting room. Even before starting my shift, I went to talk to her to find out how the surgery had gone. She told me that he had died during surgery. I remember being so upset and tearful that she was the one comforting me.
At that time, I saw death as the result of a disease.
One day, I took care of a patient who was washing the sidewalk of his house with an electric machine. The machine gave him a shock, which caused him to go into cardiac arrest, and he was taken to the hospital. I saw him in bed, in a coma, with life support. Unfortunately, he died after a few days. I was shocked! When I looked at his young wife with small children experiencing such a great loss, I couldn’t help but cry.
For the first time, I saw death not only as the result of a disease.
Death can happen at any age, regardless of the presence or absence of a disease. I am writing this book to help you to understand a little bit about the end of life. This is an informative book, designed for people like you who seek information on how to live in the best possible way and to die with dignity. I’m sure that it will help you to better understand that death is a part of life, and that the last word can be yours, even if you are unable to verbalize it at the end of your own life.
Chapter 1
THE END OF LIFE
A patient’s son described the anguish and doubt that he felt when he decided that his father, who was 86-years-old and unconscious, would not go through a 14-hour surgery. There was no guarantee about the outcome, or even whether he would survive the procedure. The tumor that had originally started at a facial nerve and spread to the brain would not decrease with radiotherapy. His father was deteriorating day by day; his appearance was deformed. It was difficult for his own son to recognize him.
On the day my father died,
he said, "he was still alive when he was taken to the emergency room. When I arrived, I met the doctor who was ready to put my father on life support, the artificial ventilator. Without it, there would be no hope. The doctor told me that it would not reverse the tumor, which now had impaired the respiratory system. I had to decide immediately what would be the best option. A few years earlier, I had explained to my father about decisions and living will, but now I didn’t know what to do. How could I take responsibility for eliminating the chance for him to live a little longer?
I asked the doctor to give me time alone with my father. I sat down and saw all the effort that my dad was making to breathe – to survive – while I was thinking about what the disease had already done to him. I thought about the agony and misery he would experience while on the ventilator, without any guarantee that his conditions would improve. After sitting there for a while, I got closer to his deformed face and whispered,
Dad, I’m going to have to let you go. He had been unconscious for a few hours and wasn’t able to understand me. But I continued crying and repeating to him many times that I needed to let him rest from this life of pain and suffering, until I was able to convince myself of what I was saying.
What would you have done in that circumstance?
The main goal of medicine is to avoid death. When you are admitted to a hospital, you will take advantage of everything that skilled professionals and high-end technology can offer. The resources will be utilized to promote cure and the restoration of health. This is wonderful! The development of science has found the cure for many diseases, prolonging the life of millions of people. However, the same science also recognizes that man is a finite being and life has a beginning, middle, and an end.
Millions die every year. Many do so naturally. Because of advancing age, people do not survive a disease or an organ dysfunction. Some die suddenly. Others however, face a problem that evolves slowly – they undergo a series of treatments, but at some point the doctor says that there are no more resources available to prevent the progression of the disease. It is then that the patient receives the news that they have a few days or months to live.
Ideally, palliative care should be introduced at that moment (if not in place yet), even if the patient chooses to continue with conventional medical treatments. Palliative care helps to control the symptoms and improves quality of life. It also makes future transitions from conventional medicine to palliative and comfort care easier.
Palliative care is not opposed to the traditional medicine. In many cases, they work together. Palliative care should start when a diagnosis of a fatal, incurable disease is given – even if death is not imminent