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Introduction
End of life is a concept that is often ignored despite the fact that everyone will die some day. It is because death is a part of life that people are familiar with palliative care given at the end of life. Yet, the end of life concept is generally thought to be something equated with human life. At least, that is what people tend to think of when the phrase “end of life” is uttered. Today, palliative care is offered when someone is dying, and when the end is predictable. Some people die a slow death from issues like cancer or heart disease, but others die abruptly from an accident or heart attack when life ends. In the latter case, the end of life is only known in retrospect.
How is the end of life defined? Death is very difficult to define. Yet, doctors have determined some criteria to at least allow someone into a hospice program. Still, the end of life can be looked at philosophically, and examined in regard to a number of different domains. Plants, insects, cellular structures and human beings each have a beginning and an end time. While human beings perhaps are conscious beings, and not like plants at all, both plants and humans experience the same cycle. They are born, they live, and then they die. Understanding the cycle of life is the key to understanding the end of life concept. In measuring a life in years, the end of life becomes known, even though the amount of time left at the end of one’s life is not set in stone.
For everyone, death is inevitable, and each loss is personally felt by those close to the one who has died. It is very important that nurses, the medical staff and or love ones understand the end of life process of the being in order to care for them. The dying person should be allowed to have a peaceful, pain free, and dignified death.
Review of literature
The end of life process is an “important phase of life,” and it is also one in which patients are entitled to the expectation of quality nursing care, as this will ensure that they have a death with dignity (Fawcett and Jacobs, 2009, p. 406). Prior to the landmark work of Kubler-Ross, death was largely a taboo subject that was not addressed (Ireland, 2010). Kubler-Ross outlined five stages, which describe the psychological, emotional journey that leads terminal patients from initial denial to solace of acceptance (Ireland, 2010). Kubler-Ross maintains, and nursing theory supports this position, that caregivers should support patients as they transition through the five stages of “denial, anger, bargaining, depression and acceptance” (Ireland, 2010, p. 238). Addressing the psychological, emotional and spiritual needs of terminal patients is a task that is often complicated the development of cognitive disorders, such as delirium and dementia (Janecki and Janecki, 2010). Nevertheless, even in such cases, there are steps that practitioners can take to address these issues.
As this indicates, the end of life process not only involves the physical care of the terminally ill patient, ensuring that the patient is pain-free and comfortable, but it also addresses the emotional, psychological and spiritual needs of the patients and their families. This concept is multi-disciplinary in its application as the issue of mortality is universal and applicable to all aspects of nursing
When someone is born, they experience growth at a certain accepted rate. Although some human beings are born with diseases that truncate or speed up life processes, most human beings can count on going through certain stages as they grow. Cellular life also goes through a formation and growth process, and then it dies. In multicellular organisms, the end result of aging is that the life span is limited (“Cellular Aging,” 2011). As cells age, they are no longer able to continue to divide (“Cellular Aging,” 2011). That said, they still remain metabolically active (“Cellular Aging,” 2011). At some point, the death of the cell occurs (“Cellular Aging,” 2011). This is similar to a human being and his or her aging process towards the end of life. The fact that death occurs at an unpredictable moment seems to be a part and parcel of the end of life concept no matter which organisms are being discussed. Insects, animals, human beings and so forth each age at a certain rate and each individual organism is different.
The end of life is the time preceding the death of the being, but the death is difficult to predict unless it is scheduled such as in the case of an execution. Someone being put to death knows when their last meal will be, but few people have such foresight. Thus, end of life is usually known often in retrospect by onlookers, or perhaps even at the moment of death when the individual is aware of what is occurring. Still, when someone has cancer for example, the individual will usually think of himself or herself as living at the end of their lives.
Sudden or unexpected deaths are not always immediate. When someone is taken to the emergency room in a living state, he or she may die there, but it is unclear. At some point in the treatment, before time of death is called, the physicians may work to save that individual. If the individual dies, one can say that the end of life period was spent some hours before death. The person might have been perfectly fine a few hours ago, eating dinner, playing hockey, watching a movie, or taking a walk, and then they are rushed to the emergency room. The end of that individual’s life from a psycho-social perspective is those hours spent the day of the death, or the time in the emergency room. Because so many deaths occur in ER’s, it is a typical place to spend the end of one’s life. Yet, there are hospice facilities designed to make end of life treatment more comfortable. Some people prefer to die in their own homes with their families around them. Of course, again, not everyone knows when the time is near, so emergency rooms are sometimes the last place that people visit before they die.
End of life care for the human being is generally prescribed for people with illnesses such as cancer. Interestingly, technology has changed the way that Americans handle death (Meyers, Golden & Peterson, 2009). When the prognosis is that the patient has less than six months to live, he or she will be able to secure a spot in a desirable facility.
Defining attributes
The defining attributes of a concept are those specific features that recur often in association with the concept and aid in differentiating it from similar concept (Lowey, 2008). The patient’s experience of dying is characterized by three principal components, which are “freedom from pain and other symptoms, living a full life and an acceptance of death” (Hattori, 2006, p. 167).
In the late 1960s, Dame Cicely Saunders, based on her work with patients at the end of life, defined the concept of total pain (Middleton-Green, 2008). Total pain encompasses “physical, social, spiritual and psychological aspects” of pain, which interact with the individual perception and experience in producing “each person’s unique pain experience” (Middleton-Green, 2008, p. 41). The End of Life Care Strategy promoted within the context of British medicine, stresses the idea of providing a “‘good death,’” which is dependent on “controlling difficult symptoms such as pain” (Middleton-Green, 2008, p. 41).
Cramer (2010) argues that terminal patients have expressed support for physician-Helped suicide because they fear what must be endured prior to death. While great strides have been made in controlling the “pain, nausea, dyspnea” and other symptoms associated with cancer, in many cases, pain control is less than optimal (Cramer, 2010, p. 54).
Research shows that the majority of patients, as well as the general public, express the opinion that they would prefer to be “cared for and die at home,” rather than in a hospital or hospice (Gomes, et al, 2010, p. 400). Therefore, this location for end of life care can be regarded as a positive attribute in this process.
Constructing cases
Model Case
Fawcett and Jacobs (2009) describe a model case of end of life care, as Fred, a 74-year-old single Catholic man was given care that showed consideration for his personal preferences and kept his symptoms controlled with pain medication. The nurses and staff also took into consideration the psychological, spiritual welfare of his family, as they kept his sister, who was visiting him with regularity, informed of his prognosis and encouraged her to stay overnight when it was judged that death was near. Fred passed peacefully, pain-free and with his wishes and personal preferences honored (Fawcett and Jacobs, 2009).
Invented cases are fictitious ones that help the staff to understand the ideal of palliative care (Foster, 2007). Illegitimate cases are when the term palliative care is used improperly (Foster, 2007). Yet, there are legitimate cases that are borderline. In such instances, it is unclear as to whether the patient should receive end of life care. There are related cases where the patient may not need palliative care as they do not fit the criteria. Yet, these patients may be dying. The fact that there are cases where end of life cannot be absolute is attached to the idea that a time of death is simply unknown in all cases. A doctor may predict that someone has six months to live, but that person can die the next day or live another decade.
The borderline case contains some, but not all of the critical aspects that would require palliative care (Foster, 2007). Foster (2007) writes about pediatric end of life care, but the principles are applicable to someone of any age group. That children die and need end of life care is not foremost on an individual’s mind, but it is important to examine. Children die before what someone would say is “their time.” However, in exploring the end of life as a concept, people and beings of all ages die, and there is sometimes no rhyme or reason for it.
A related case is when the patient does not meet the criteria for palliative care (Foster, 2007). Yet, the patient may in fact be at the end of life. Foster (2007) provides an example of a seven year old who had been battling cancer for two years time and is not expected to make it through the night.
Contrary cases are when patients are not provided with appropriate end of life measures. Foster (2007) writes: “Although potential for death is clear, total and individualized care to the patient is inadequate, support to the family is not provided, and an interdisciplinary approach with team agreement is nonexistent” (212). Foster (2007) gives an example of a baby who is brought into the emergency room. While doctors provide care, a nurse decides that the baby is close to death and suggests palliative care; however, the physicians keep working on the baby until he ultimately succumbs to death (Foster, 2007). In regard to such issues, Bloomer, Moss & Cross (2011) note that many people are admitted to hospitals with a life limiting illness, but they are provided with active treatment with the goal of being cured. This is not surprising. Physicians are trained to save lives. However, when this occurs, the dying process—a natural part of life—becomes medicalized (Bloomer, Moss & Cross, 2011).
Antecedents
The principal antecedent of the end of life process is generally acknowledged to be the diagnosis of terminal illness and the accepted self-awareness of this prognosis by the patient (Hattori, 2006). Knowledge of their prognosis is a required factor in order for patients to undertake the psychological, spiritual and emotional adjustments necessary to accept that they are dying (Hattori, 2006). It is this awareness that often prompts individuals to examine their lives and spiritual issues frequently become significant (Hattori, 2006).
There are multiple antecedents that pertain to the palliative care process at the end of life, particularly in regards to elder care. Elderly patients who have been living with chronic conditions experience the end of life process as “typified by pain, low use of hospice care, excessive hospitalization, inattention to advanced care planning, poor communication and family dissatisfaction” (Murray, 2007, p. 371).
Another antecedent to the end of life process is the ethnic and cultural patient background. (Ho, Krishna and Yee, 2010). Different cultures have specific expectations and beliefs that pertain to the end of life process. For example, Ho, Krishna and Yee (2010) describe the case of elderly Chinese man living in Singapore, who was diagnosed with metastatic cancer. The family of the patient and the physicians handing his care developed conflicting goals, as the family wanted their patriarch treated with an untested medication and his physicians favored conventional interactions (Ho, Krishna and Yee, 2010). Eventually, a consensus was reached as to the elderly gentlemen’s treatment, which honored the desires of his family and also reduced the patient’s distress and experience of pain, demonstrating the utility of effective cultural communication. (Ho, Krishna and Yee, 2010).
Empirical Referents
There are numerous instruments that can be utilized to evaluate the psychological state of the terminally-ill patient, as well as the quality of palliative care that the patient receives, as scales for “adjustment, depression, grief, caregiver strain, burden and hope,” to name just a view, may be utilized (Lowey, 2008, p. 212). In regards to the terminal prognosis itself, Cramer (2010) emphasizes that predicting outcomes is one of those difficult situations in which practitioners can only make educated guesses. Nevertheless, there are an increasing number of tools that can be used to facilitate the process of making a terminal prognosis (Cramer, 2010). Even so, it should be remembered that a terminal prognosis remains only a guess, as even when the chance for survival is only 5 percent, “someone was in that 5%” (Cramer, 2010, p. 54).
Conclusions
The end of life process refers to all of the features that characterize dying and palliative care for terminally ill patients. As shown by the research of Kubler-Ross, terminally ill patients go through five stages of cognitive dissonance before arriving at acceptance of death. Research indicates that progression through the stages is not linear and often jumps around between stages, often with the patient experiencing more than one simultaneously. Nursing literature is in consensus that it is important ethically for nurses to help patients through this process, while also providing relief from pain and physical distress.
What does examining end of life issues teach people? Certainly, this is an important issue because everyone will die some day. Death is all around people and it is important to address what can happen at the end of life and how to properly deal with this subject matter. It is especially critical for doctors who deal with the issue everyday.
