WHEN MEDICINE IS NOT ENOUGH: HOW NURSES CAN IMPACT
THE END OF LIFE
by Pam Saucier BSN, MBA,RN
In the United States, the land of opportunity, our culture trains us to pursue our dreams and to defy the odds. With enough power, money, and /or determination, we can do anything! In the world of healthcare, these beliefs translate into fighting disease by continuing treatment to extend life for as long as possible–to defy death–at any cost. When a patient is diagnosed with a life limiting illness, the usual response is to obtain one more treatment, one more surgery, one more alternative therapy.
Often, as healthcare professionals, we continue to offer these options along with assurance that there is still some hope for a cure even though research data and our cumulative medical knowledge and experience clearly tell us otherwise. Why have these tendencies become the norm? Why should these practices change? And, how should these changes be implemented?
The inclination to offer hope for a cure instead of communicating the reality of the situation occurs for several reasons. First, this is what medical schools and nursing schools train us to do. Second, discussing the dying process and end-of-life issues with a patient is extremely difficult. Looking into a person’s eyes or hearing a person’s voice beg for a glimmer of hope pulls on every part of a healthcare professional’s being. To offer some form of optimism seems to be the best, and certainly the easiest alternative for everyone involved.
Another contributing factor to our current practice is that we in the nursing profession often avoid confronting our own thoughts, feelings, and fears about death and dying. As a result, we are ill equipped to help others face these issues. Finally, to admit that a patient is beyond our help forces us to accept the limitations of our profession and our own inabilities to produce a cure.
As a nurse, my perspective on patient care in regard to end-of-life issues has changed dramatically over the past ten years. At Alive Hospice, I continually encounter patients who are referred to hospice care with only weeks, days, or even hours to live. Although one of the criteria for accessing the Medicare Hospice Benefit is a six-month prognosis, most patients receive hospice care for only seventeen days. Many patients are not referred to hospice until the family is overwhelmed with trying to provide care at home and they are in a crisis state.
At this point, patients often realize for the first time they are close to death. They frantically struggle to deal with unfinished business as their body grows weaker and begins to shut down. Family and friends who thought their loved one was “just around the corner from a cure” are in shock and disbelief, which makes a difficult time even more arduous, chaotic, and stressful. The comment most often heard by hospice staff from patients and families is, “I wish we had been referred to hospice sooner.”
I strongly believe that as nurses we can use our knowledge, skills, and influence to assist patients and families in confronting terminal illness and making informed decisions about the dying process, the quality of life, and the choices a patient has regarding what to do with his or her remaining time.
In contemplating end-of-life issues, our first step is to accept the indisputable fact that time here on earth, as we know it, is limited. Death is a natural part of the life cycle. Although we do not want to hasten that process, there will come a point when pursuing curative treatment is futile.
The second step is for the healthcare professionals involved to be open and honest with the patient and family. We often do not communicate to the patient in a realistic manner the adverse effects continued treatments would have on quality of life, including the possibility of limiting the patient’s lifespan. The patient has a choice that so often we in the healthcare professions do not allow him or her to make. Living out the last few months with some degree of quality of life or continuing to pursue aggressive treatment that will not change the outcome and may even hasten death is the patient’s choice–not ours.
Given that nurses have always been and continue to be the chief patient advocates, we have a tremendous opportunity to guide patients and their families as they work through this process. We are so indoctrinated that life must be pursued at all costs we often don’t think of the objective of the treatment(s) we demand our patients tolerate. We continue to treat the abnormal lab values and the spreading disease instead of focusing on the symptoms that are affecting the patient’s quality of life.
Once a patient and family understand that time is limited, nutrition is often an issue. Families and even some healthcare professionals do not seem to understand that a body racked with disease is shutting down and no longer requires the calories it once did. When I am not hungry, the last thing I want is someone trying to convince me to eat! However, we continue, especially in the South, to persuade a patient to eat even when he or she is not interested. To eat or not to eat is the patient’s choice.
Hydration is also a major concern of families. Again, families and many healthcare professionals do not understand that IV fluids do not lengthen the life of a person with a life-limiting illness. The declining body cannot absorb these fluids so it goes into pulmonary edema. In these situations, the last few hours of life are much more difficult for both the patient and the family because of increased respiratory distress and the sounds the patient makes due to the wetness of the lungs. The family agonizes over the patient’s condition and cannot forget this experience after the death of their loved one.
Emotional and spiritual end-of-life issues are as important to patients, and in many cases even more so than physical concerns. Providing the patient time to say good-bye, to make amends, or to make plans is crucial in order for a person to have a peaceful death. Often, these plans include requesting funeral arrangements, preparing a will, making arrangements for young children, seeking religious counsel, and more. A recent patient in The Residence used his last few months to work out issues with his estranged family of fifteen years. At the time of death, his entire family was gathered around his bed. If a person does not have this opportunity, unfinished business will often translate into such physical symptoms as pain and agitation. Letting a patient and family know that life expectancy is measured in months instead of years is key to the family’s ability to cope with these circumstances. Families who do not confront these life-closure issues with the patient tend to have a more complicated grief process after the death.
In order to assist patients and their families through the last months of end-stage heart disease, end-stage lung disease, cancer, or other life-limiting illnesses, nurses must confront their own feelings on end of life and death. We enter the nursing profession to help others, and the ability to communicate empathy is a necessary tool for a successful nurse. More than any other healthcare professional, nurses are called upon to provide support and understanding to families who are walking the last miles of a loved one’s life. Who receives the phone calls from a stressed family member at the doctor’s office? Who listens as the patient’s spouse pours out his or her concerns and fears? Who takes the time to listen? The nurse. Making a phone call of support or providing a hug is part of what we do as nurses to show that we care. Making referrals to such appropriate agencies as a hospice, counselor, or support group is a vital part of our job to support the patient and the family.
As a nurse, however, confronting end-of-life issues with someone who is facing impending death is emotionally taxing. Establishing personal boundaries is mandatory to your own personal health and well being. Learning where to draw the lines for those boundaries comes with practice and experience. We tend to identify in some manner with the patient or family over the loss. The patient reminds us of our mother, our child, or our husband. The death becomes even more personal. Closure is necessary for a nurse after involvement with a dying patient. This closure can take the form of attending the funeral, calling the family a week after the death, writing in a journal, or sharing your feelings with someone.
While the primary goal in healthcare is to sustain life, valuing quality of life and respecting death as a part of the life cycle must be of utmost consideration, particularly for patients who are terminally ill. The patient and family must be given complete information about the medical condition, including pros and cons of each treatment option, in order to make informed decisions. Assisting patients and their families in confronting and dealing with end-of-life issues is vital to fulfilling our role as chief patient advocate, and it is our ethical responsibility.
Working at Alive Hospice, I encounter these situations daily. Confronting end-of-life issues while continuing to provide care does not get easier with time. Each experience is as unique as the individuals involved. However, to help people in their time of greatest need brings a strong sense of purpose and fulfillment.
To walk these last steps with a patient leaves an indelible mark on our lives. To face our own mortality brings a new appreciation for the precious gift of life. As nurses, our goal should be not only to accept death as a natural part of life, but also to assist those we serve to do the same.
Pam Saucier BSN, MBA,RN serves as the Director of The Residence and Performance Improvement at Alive Hospice. Other responsibilities include staff education, compliance, and research. Additionally, she is a member of the Joint Commission Advisory Board and the Hospice Compliance Network Advisory Board. Prior to her arrival at Alive Hospice in 1992, she worked in pediatrics and ER. She obtained her nursing degree from Vanderbilt University School of Nursing in 1985 and her MBA at the Belmont Jack Massey School of Business in 1998.