Nursing Perspective of Death and Dying
Death and Dying
Death is the cessation of life. The definition of death has changed over time as advances in medicine and technology made it possible to prolong cardiac and respiratory functions by "artificial" means.
Today the widely accepted definition of death is the irreversible cessation of circulatory and respiratory functions, or the irreversible sensation of all brain functions, including the brain stem (President's Commission, 1981).
Dying is one of the many transitions we experience in life. It is difficult to determine when dying begins, it occurs at different rates and ways in individuals.
The American Geriatrics Society (AGS) offered clinicians some guidance for determining when dying begins with the statement: "people are to be considered to be dying when they have a progressive illness for which there is no treatment that can substantially alter the outcome" (AGS , 1997).
Dying has been defined by
researchers on the basis of a diagnosis of a terminal illness or one without a
cure, physician prognosis, prognostic assessments of patients or family
members, and by care settings such as hospice.
Other Terms Associated With Death And Dying
Other terms associated with end-of-life care are palliative care and hospice. The World Health Organization (WHO, 1989) defined palliative care as "the active total care of patients whose disease is not responsive to curative treatment when the control of pain and other symptoms and of psychological, social, and spiritual problems is paramount" (p. 1.52).
Hospice refers to a concept of care that can be provided in a variety of settings. The family is the unit of care and a multidisciplinary approach is used to address physical, psychological, and spiritual needs of the dying person and their family.
The
focus of care is enhancing the quality of remaining life and providing support
to the family in the dying process and bereavement.
Problems With Death And Dying Care
A number of recent studies of death and dying have identified problems with the care of dying persons and their families (SUP PORT, 1995; Field & Cassel, 1997; Teno et al., 2004).
Nurses, as the largest group of health care providers, have the opportunity to change the experience of dying and promote quality end-of-life care. Nursing's contributions to end-of-life care and areas for further research are described in the following sections .
Early studies of death and dying by nurses in the 1960s and early 1970s took place in hospitals and focused on nurses' attitudes towards death and dying and family responses.
Benoliel (1983), in a comprehensive review of nursing research on death and dying from 1969 to 1984, noted most nursing studies were descriptive in approach and lacked a central paradigm.
She concluded that although the stressful nature of death and dying was well documented, little was known about the nature of support that is helpful to patients and families and the influence of other variables, such as age and culture.
Nursing Perspectives
The hospice movement began in the United States in 1974 with the opening of Hospice, Inc. in New Haven, Connecticut. Florence Wald, Dean of Nursing at Yale University Nursing, and a group of volunteers were instrumental in starting the first hospice.
Hospice experienced rapid growth due in part to the growing dissatisfaction with medical care of the terminally ill. Studies of hospice began to appear in the literature in the 1980s.
Corless (1994) reviewed hospice studies from 1983 to 1992 and noted that researchers examined the impact of hospice as an innovation, family perceptions of hospice care, coping strategies of families in hospice home care, and satisfaction with hospice home care.
Studies of the effectiveness of interventions to control symptoms such as pain
were lacking. The approaches used in these studies were primarily case studies,
Q-sort techniques, and retrospective medical record analysis.
Family And Caregivers
Research on hospice family caregivers has focused on people with a diagnosis of cancer. The educational needs of caregivers for persons with a diagnosis of cancer were the focus of seven studies (Thiemann, 2000), Both quantitative and qualitative methods were used with similar findings.
The most frequent educational needs
were for information on the patient's illness, instructions on caregiving
techniques, and information on community resources.
Care of a Dying a Patient
Caring for a dying family member is an emotionally intense experience. Hospice family caregivers for persons with a diagnosis of cancer need time for self, time for rest and sleep, spiritual needs, information on how to deal with the patient, and how to maintain independence ( Thielemann , 2000; Harrington, Lackey, & Gates, 1996).
Studies of family needs and coping are descriptive with
small samples and lack diversity of age, diagnosis, and ethnic groups.
Nursing Research On Dying Care
Research on the experience of dying is limited and has occurred in acute care hospitals or hospices. The setting of care for older adults has a direct impact on the quality of life at the end of life ( Mezey , Dubler , Mitty, & Brody, 2002).
The majority of studies are with people who have a diagnosis of cancer.
As people are living longer with chronic illness, there is a need for studies
to examine the experience of dying from chronic illnesses, for example heart
failure and dementia.
Several large-scale national studies in the 1990s described problems and deficiencies in end-of-life care.
The Institute of Medicine studied end-of-life care and identified the following major deficiencies in care: too many people suffer at the end of life; legal, economic, and organizational obstacles obstruct excellent care at the end of life.
The education of physicians and other health providers fails to provide them with the knowledge and skills required to care for dying patients, and current knowledge is inadequate to support evidence-based medicine at the end of life (Field & Cassel, 1997).
Study Outcomes
The Study to Understand Prognoses and Preferences for Outcomes and Risk of Treatment, known by the acronym SUPPORT, was a large-scale controlled clinical research study of more than 9,000 patients in five teaching hospitals.
The study was designed to examine end-of-life decision making and test an intervention to improve end-of-life care. The first phase of the study examined decision making and patient outcomes.
SUPPORT investigators concluded that physician-patient communication was often unreliable and physicians showed little interest in the patient's preferences for care. The second phase was an intervention designed to improve communication, end-of-life decision making, and pain management.
Nurses were an important part of the intervention and
worked with patients, families, and physicians. Unfortunately, the intervention
failed. Communication remained flawed, there was an overuse of aggressive
treatment, and patients suffered undue pain at the end of life.
Dying trajectories differ at the end of life with various patterns of functional decline; however, there are few studies of functional decline in large populations. Lunney , Lynn, Foley, Lipson, and Guaralnik's study (2003) of 4,190 participants in the Established Populations for Epidemiological Studies (EPES).
They found that functional decline differs among four types of illness trajectories: sudden death, cancer death, death from organ failure, and frailty.
Each of the four groups had different trajectories of dependency and
needs.
The Robert Wood Johnson Foundation, the Project Death in America, and the Department of Health and Human Services have made funding available to educate nurses in end-of-life care and support research.
Nurse researchers need to conduct
research in a variety of settings with diverse population groups in order to
influence practice and improve the quality of end-of-life care.
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