END-OF-LIFE CARE: -Part 3
ARE NURSES EDUCATIONALLY PREPARED?

C. Today's Trends in End-of-Life Care

The growth of the elderly population is a phenomenon that will continue well into the next century. There are more than 33 million individuals older than 65 in the United States and they represent the fastest growing segment of the population (Schlegel, 2000). Americans, especially older adults, value individual autonomy in health care decision-making and fear a diminished quality of life. We are witnessing an intense interest and demand by health care consumers seeking autonomous control and self-determination in medical decision-making. With the first Natural Death Act, legal guidelines have been enacted by states to address these concerns (Schlegel 2000). Health care providers are much better at saving lives than helping patients know when life is at its end. Nurses perpetuate the myth that not talking about death will keep it at arm's length. There is little evidence to suggest that patients and their families are well informed about EOL issues, or about their options for treatment and care. Research results indicate that nurses most often selected discussion of the dying process with patients and their families as the number one core competency about which they would like to have had more education (White, 2001). This finding is not surprising given America's cultural denial of death and the fear of dying. This denial is reflected in national initiatives for improvements in healthcare. During the previous decade, extensive literature has documented serious deficiencies in pain management. Studies often have identified inadequate education of professionals as a major barrier to improved pain management and palliative care (Ferrel, 1999). The SUPPORT Study (Study to Understand Prognosis and Preference for Outcomes and Risk of Treatments) revealed that dying patients experience considerable suffering and are victims of inappropriate use of medical resources. The fear of experiencing a “bad death” seems warranted by the conclusions of a 5-year study of EOL care received by 9,000 dying hospitalized patients (Tomko, 2001). Many people die long and painful deaths and receive unwanted, invasive medical attention. Some people die in a place where the fear of pain and loss of control and dignity become a burden to them and their families. The ideal environment would be one in which the patient and family would be able to plan ahead for the death and where the center of control is wrested back from the medical sphere and returned to the patient.

Now, more than ever, patients have the chance to spend their dying days cared for by an EOL care team. These teams could attempt to provide a secure environment for the patient where symptoms are expertly managed. Such teams could provide medical, emotional, and spiritual support to the patient as well as their family through a comprehensive, interdisciplinary approach to care.

Satisfaction at the end of life has been positively correlated with EOL care, where emphasis is placed on palliation. However, only about 20% of patients who die in the United States receive EOL care. This is in part related to the difficulty in accurately predicting prognosis and in part related to the discomfort surrounding discussing prognosis with patients (Tomko, 2001). Stable misinformation is another inadequacy identified which can be particularly resilient to educational strategies because people are unaware of their knowledge deficit and therefore do not seek accurate information. Continued efforts should be made to define and improve communication techniques in professional and continuing educational programs.



II. FOCUS AREAS FOR IMPROVEMENT IDENTIFIED

Spiritual-Psychosocial Health

Areas of spiritual-psychosocial health of dying patients have been identified as weaknesses among nurses in their fundamental education. One of the basic tenets of EOL care is the treatment of patient and family together. Death in acute care institutions has caused many families to come apart. EOL care helps to make death a coming-together. Approaching death can be a spiritual and psychosocial growth-filled experience for families. Nurses must facilitate communication among family members so that the remaining time can be as complete as possible. The closeness established between patient and family during a peaceful terminal phase can ease acceptance of death. The needs of the dying and their families are personal. The impersonal, highly specialized medical technology and the bureaucracy of the modem acute-care hospital do not often meet those needs. Research indicates that a significant difference exists in the mortality experience of grieving families, depending upon whether the patient died at home or in a hospital that does not utilize EOL care. The risk of the remaining relative dying within a year of bereavement was found to double if the first death occurred in a hospital not practicing EOL care rather than at home (Buckingham, 1996). Examination of focus areas identified for improvement in spiritual-psychosocial includes: anxiety, delirium, depression, and communication.

                                                                        Cont'd

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