Introduction

Nurses and other health care clinicians can work in a variety of settings caring for many different populations of people. Some of these settings provide inpatient care to patients, such as hospitals or nursing homes, while others focus on outpatient type care, such as home health care. Nurses care for diverse populations of patients, both in age and in position along the health/illness continuum. One of the main goals in nursing care is to promote health and prevent illness. This is a goal for all our patients of any age. We care for both healthy and unhealthy newborns, children, adults, and older adults and provide interventions that are aimed at maintaining wellness and restoring health. The human body is remarkable and can heal from many serious conditions, including severe trauma, infectious diseases, and many other alterations in health. Sometimes, however, people develop conditions that cannot be cured despite the many modern advances in medicine. The end result of medicine that cannot reverse the process of illness eventually will be death. Sometimes death is unexpected, as from an accident, while other times it can be anticipated, as when chemotherapy is no longer effective for a person diagnosed with an advanced form of cancer. The majority of these deaths will occur in a healthcare setting, which is where most nurses work. Nurses working in healthcare settings not only provide care to people who are restoring their health, but also to those who are dying. It is essential that nurses and other clinicians have the knowledge and skills to care for patients who are dying and their families who are dealing with impending loss.

In the Institute of Medicine (IOM) report, Approaching Death: Improving Care at the End of Life (1997), the consensus of committee members is that every healthcare professional who will care for dying patients and families’ needs to have a basic educational preparation in order to be able to provide both competent and compassionate care. Although national efforts such as the development of End of Life Nursing Education Consortium (ELNEC) have increased the number of nurses and nurse faculty trained in end-of-life care, there continues to be a lack of preparedness in end-of-life care competency among nurses. Previous research has found only one in four nurses feel confident in caring for dying patients and their families, and that less than 2% of overall content in nursing textbooks were related to end-of-life care (Kirchoff, Beckstrand, Anumandla, 2011; Ferrell, Virani, & Grant, 1999). Despite the tremendous growth in palliative and end-of-life care programs across the country, very few nursing education programs provide adequate education on this topic for our future nurses. Most end-of-life care content is scattered throughout nursing programs, if at all, and there usually is no specific course or textbook that focuses on the subject. Although only a small percentage of nurses practice in the specialty of palliative care and hospice, all nurses should have educational preparation in end-of-life care because of the widespread contact nurses have with people at the end of life.

Perhaps the greatest message this book hopes to bring to students learning a healthcare profession is about the power of your voice. This is one area in which you don’t need to have a 4.0 grade point average to make a difference in the life of your patient. Yet, practicing effective communication with patients is often the least practiced skill during nursing school. More of an emphasis is often placed on honing in on other more technical skills such as administration of injections, sterile technique, or insertion of a urinary catheter. While acquiring competence and confidence in all the aforementioned skills is essential during nursing school, so is acquiring competence and confidence in effective communication skills. This is a vital part of the role of any professional health care clinician when communicating to patients, families, and other members of the healthcare team. If one doesn’t possess confidence in their basic communication skills with patients on routine matters, than other more difficult kinds of communication encounters, such as with persons who are actively dying or with families who have just lost a loved one, will be the upmost challenge. Yes, nurses will continue to provide competent care in the “technical skills” associated with nursing; however, they will often overlook and refrain from engaging in the type of communication which this book is dedicated to fostering.

It is especially vital to patients and families going through this process to be able to have healthcare professionals who they can have open communication with. The goal of this book is to introduce students to the reality that interactions will happen with patients that are uncomfortable. Being a nurse or other healthcare professional does not exclude us from having difficult or uncomfortable conversations with people. These will occur and it is important to be prepared for it. What would you do or say when you walk into a room to give your patient their scheduled medication and they say to you, “So did you hear, I only have 2 weeks left” or “I am done with that awful chemo, I want to go home and die.” Your natural inclination might be to ignore what you heard, administer the medication, and quickly leave the room. In my 20+ years in healthcare, I have witnessed this outcome more times that I can count. Nurses do not avoid these conversations because they are not knowledgeable, or because they do not care. In fact, they care very much and do not know how to respond in a way that they perceive is helpful to the patient. They do not want to say the wrong thing. At the end of life, however, saying nothing is the wrong thing. Chapters 10 and 12 of this book will go in depth as to how to respond to patients and families during these difficult times in their lives.

This textbook is divided into three parts: Anticipation, In the Moment, and Afterwards. Each section is meant to depict a temporal period of time that patients and families go through during the end of life. The chapters in Anticipation discuss topics that introduce death and dying, including historical perspectives, trajectories of illnesses leading to the end of life, types of care at the end of life, and initiating discussions about end-of-life care with people with serious illnesses. The second part, In the Moment, explores the management of various concerns related to people at the end of life, including pain, symptoms, and distress. Care at the time of death is discussed, as this is the last phase of life and it is especially important to be able to provide excellent nursing care to patients and families during this time. Finally, Afterwards is the third and final part of this book; topics include ways nurses can help families find closure and deal with their grief. The final chapter in this part is written to promote self-reflection among nursing and healthcare students regarding death and dying.

Lastly, if you are a student reading this introduction, please know that you are taking an important first step in acquiring the competence and fostering the compassion you will need to provide quality care to patients and families in need. Most nursing students go into the profession because they want to make a difference in the lives of people in need. Many want to be a part of restoring a person’s health or being able to contribute to saving a life. Few enter the profession specifically to provide comfort to patients who are dying, yet most nurses will encounter that situation many times throughout their career. This book, along with your education and training throughout nursing school, will give you the foundation to be able to recognize and respond to patients and families who are dealing with the end of life. In time, you will gain confidence and experience, both of which are essential for providing optimal care to patients who are dying. In the meantime though, as a novice nurse, you must remember that although you might not feel like you have all the right answers to comfort a dying patient or grieving family, you have more than you think. It is never wrong to simply say, “I’m sorry, I wish this wasn’t happening to you” or to quietly sit with someone and hold their hand. Your presence, if you are truly “present,” will be comfort enough.

References

Ferrell, B., Virani, R., & Grant, M. (1999). Analysis of end-of-life content in nursing textbooks. Oncology Nursing Forum, 26 (5), 869-76.

Kirchoff, K.T., Beckstrand, R.L., & Anumandla, P.R. (2011). Analysis of end-of-life content in critical care nursing textbooks. Journal of Professional Nursing, 19(6), 372-81.

National Institute of Medicine. (1997). Approaching Death: Improving Care at the End of LifeWashington: DC.

License

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Introduction by Susan E. Lowey is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License, except where otherwise noted.