End-of-life issues are frequently present in today's literature, both medical and layperson. Common topics of discussion include but are not limited to: (1) end-of-life care; (2) hospice and palliative care; (3) termination of life support; (4) physician-assisted suicide; (5) the nurse's role in termination of life support; (6) the nurse's role in end-of-life care; (7) dealing with death and dying; (8) ethical issues involving this subject; and (9) legal issues. However, this is not a new issue. End-of-life care and what constitutes end of life has been discussed for decades.
Dealing with end-of-life issues is something all critical care nurses will face in their career. As critical care nurses and teachers, it is imperative that we understand our positions on this issue and share our knowledge and experience with nurses less experienced in this area. Sometimes the best way to do this is to relate your own experiences and opinions. What follows is a discussion of my experiences with end-of-life issues, both professional and personal. It is hoped this personal sharing will provide some insight for others and generate discussion among the readers of their own experiences. Remember, you are a teacher as well as a nurse.
As a critical care nurse, I have had no legal or ethical dilemmas concerning end-of-life care or participating in the removal of life support when the wishes of the patient/family are followed. Do-not-resuscitate (DNR) orders have never bothered me. I know a few nurses who find it difficult to care for patients who have DNR orders. In many instances, these nurses are uneasy with death and/or uncomfortable working with families who are undergoing this process. These are usually younger and newer nurses who may be inexperienced in many aspects of life. Experience tends to alleviate some of these concerns.
My first experience with a DNR patient occurred shortly after graduation from nursing school. I had just started my career in critical care and I was caring for an elderly woman who had sustained a massive anterior wall myocardial infarction. She developed cardiogenic shock and, despite our best efforts and medical technology available at the time, it was obvious she was not going to survive. She became less responsive and the physician discussed options with her family. In this case, the patient had told her family that she did not want to be "kept alive on machines." The family had dealt with this issue when a family member had lingered on a mechanical ventilator for several weeks before dying.
The family was in agreement that no actions would be taken in the event of a respiratory and/or cardiac arrest. The nursing staff provided comfort measures only, for both the patient and her family, during the patient's last 3 days. Despite the very restrictive visitation policy, we allowed the family to remain at her bedside. At any given time, at least 3 family members were with her. The physician vehemently opposed having the family at the bedside. Although he denied it, I felt this was related more to his discomfort level more than any rationale explanation concerning patient care. She died peacefully on my shift with her family at her bedside. Everything that could be done to support the family was done. What makes me remember this patient so vividly was the reactions of the family. They were so grateful for every little thing the nursing staff did, things we take for granted as just part of what we do. After her death, the family expressed their gratitude to the staff and gave each of us a hug as they left the unit for the last time. I still have a small figurine one of her sons gave me that night. I believe this positive experience helped prepare me to deal with other death and dying issues with future patients. Although this was not my first patient to die, she was my first DNR patient.
My first experience with terminating life support came a few months later. The patient was a teenager who had sustained a severe head injury and was clinically brain dead. After 3 days, his mother made the decision to donate his organs. After some very tearful goodbyes (both the family and the nursing staff), the patient was transferred to surgery for organ harvest. Although this was difficult, it helped me to know that his death would help others who needed the organs.
This was a far easier experience than actually removing life support from a patient who was not brain dead but had expressed a desire to forego further medical treatment. My first experience with this came several years later with an elderly gentleman who suffered from end-stage chronic obstructive pulmonary disease. He had been receiving mechanical ventilation for over a month and was lucid and oriented. He expressed a desire to end mechanical ventilation. His family agreed. We had a psychiatrist assess him for depression but the man simply was tired and did not want to spend his remaining days on a ventilator. After he signed the necessary papers, we used medications to treat his dyspnea and any anxiety and the ventilator was removed. He actually survived 3 more days and was able to speak with his family and the staff until just a few hours before he became unresponsive. It was a very peaceful death with his family at the bedside. The family was very grateful for the opportunity to talk with their loved one before his death.
Unfortunately, I found myself on the other side a few years ago after a close relative suffered a cerebral vascular accident, which left her comatose, and what would have been a chronic ventilator-dependent state. This was the time to see if I could practice what I believed. Every patient I cared for helped me through this personal situation. She was only 47 years old but had multiple health problems. As a family we had discussed end-of-life care several years earlier. Unfortunately, she never placed her wishes in writing. (I strongly encourage everyone to put their wishes in writing.) When the neurologist and the pulmonologist informed us of the hopelessness of the situation, we informed them of her wishes concerning end of life. The neurologist and nurses were very supportive of our decision. However, the pulmonologist was very reluctant to remove life support. He was the admitting physician and initially refused to follow our wishes.
The nurses were very supportive, allowing us to remain with her, bringing us beverages, asking if there was anything they could do, and so forth. Finally, on day 3, with no change in her condition or prognosis, the pulmonologist reluctantly turned off the ventilator with our family at her bedside. It took some more persuasion before he would remove the endotracheal tube but he finally did remove the tube 2 hours later. It was clear to us that he did not support our decision. He refused to speak to any of us after he removed the endotracheal tube and left the unit. She died peacefully about 1 hour after removal of the endotracheal tube with all of us at her bedside. The nurses provided us with as much privacy as they could in an intensive care unit. They remained close if we needed them but respected our desire to be alone with our loved one.
This personal experience has made me a better nurse. I can definitely relate to families as they ponder and make these life-changing decisions. I will always be grateful to the nursing staff during this difficult time in my life.
However, the important thing to remember is that we all have personal experiences, which prepare us to deal with the future. These experiences help us meet the needs of families of critically ill patients and help us meet our needs. As critical care nurses, we are in a unique position to provide both emotional and physical care during this trying time. Embrace your experiences and let them work for you to help you both professionally and personally. Remember to share your experiences with others. Nurses are teachers as well. Sharing personal experiences is another teaching strategy we can use to help newer nurses deal with this situations as well as patients and families who may be faced with these crucial decisions.
Vickie A Miracle, EdD, RN, CCRN, CCNS, CCRC
Editor, DCCN and Lecturer
Bellarmine University School of Nursing
Louisville, KY