Search PubMed⌕ Search

SEARCH · Search PubMed

Results for “The End of Life”

Search indexed PubMed citations on genomics, clinical trials, systematic reviews and public health. Explore titles, authors and supplied subject terms, then open the PubMed record.

Quote a phrase for an exact phrase match. Source license links do not imply unrestricted reuse.

At least 19 recordsLinked to original sources
PubMedDate not supplied

Teaching cultural considerations at the end of life: end of life nursing education consortium program recommendations.

BACKGROUND: The End of Life Nursing Education Consortium (ELNEC) is an end of life care nursing education program that addresses the many dimensions of culture, including ethnic identity, gender, age, differing abilities, sexual orientation, and religion and spirituality. This article focuses on one of the program's modules entitled "Cultural Considerations in End of Life Care." METHOD: The ELNEC "Cultural Considerations in End of Life Care" module, which identifies important cultural considerations as well as strategies and responses to teach cultural competence and sensitivity in undergraduate nursing curriculum, is described. FINDINGS: A total of 564 nursing faculty members and 707 continuing education faculty members have undergone ELNEC training. Essential module components including teaching strategies and resources are presented. CONCLUSION: Comprehensive education for nurses regarding cultural considerations in end of life care results in improved care for dying patients who ultimately have a peaceful, respectful death with sensitivity to their cultural expectations and needs.

Cultural Diversity↗
PubMed2002

Economics and decisions to end life: van Acht and Stooker revisited.

Debates about euthanasia have tended to exclude any economic arguments. This might be due to the narrow perspective of the economic arguments presented to date, most of which focus on the health care costs in the last year of life. This paper considers the wider economic aspects in decisions to end life, including potential methodological weaknesses in measuring costs in the last year of life, the costs of euthanasia itself, the value of patient preferences and the value (and problems) of choice. Suggestions are made on how these economic issues might be explored to take the economic arguments forward.

Decision Making↗
PubMed2002

What's end of life got to do with it? Research ethics with populations at life's end.

PURPOSE: This study addressed key concerns that gave rise to the question of whether special guidelines were needed to monitor research at the end of life. DESIGN AND METHODS: Summary of established ethical and legal guidelines that govern the conduct of research with human subjects, with discussion of issues relevant to populations at life's end. Discussion of whether special guidelines are indicated focuses on four questions concerning: (a). time periods; (b). methods and approaches; (c). informed consent; and (d). obligations of researchers. RESULTS: Although research involving patients at end of life does present important ethical and moral challenges to researchers and should be scrutinized carefully by institutional review boards (IRBs), special guidelines are not required. IMPLICATIONS: Closer examination of the dimensions discussed will enhance the research endeavor and model the qualities for which end-of-life research should become known.

Aged↗
PubMed2004

Issues for statisticians in conducting analyses and translating results for quality of life end points in clinical trials.

Quality of life (QOL) end points in pharmaceutical clinical trials are at a crossroads. On the one hand, much has been learned in recent years of how to efficiently and effectively measure patient QOL. On the other hand, investigators and regulatory agencies still struggle with exactly how to assess the results of QOL end points and other patient-reported outcomes. Statisticians are often left in the position of having to bridge the gap between investigators who want to assess patient QOL and regulatory bodies who want a sound scientific rationale and analysis plan for doing so. Unfortunately, little has been written specifically for the statistical audience to assist in this translation. The purpose of this paper is to attempt to bridge this gap. We will describe the language and methods that have been successful in translating the psychometric and statistical challenges into understandable findings for investigators and regulatory agencies. One of the most important advances is the development of a general guideline for assessing clinical significance, namely the "half standard deviation" method based on the empirical rule effect size (ERES) approach. We populate the paper with concrete examples of how QOL data need not be treated any different, in terms of statistical analysis, than tumor response or other clinical end points.

Clinical Trials as Topic↗
PubMed1989

Quality of life end points in cancer clinical trials: review and recommendations.

In this presentation, issues that influenced the development of policies for inclusion of quality of life end points in certain Southwest Oncology Group clinical trials are reviewed. The key policies recommended by us and adopted by the Cancer Control Research Committee of the Southwest Oncology Group are as follows: (a) Begin assessment of quality of life in specific types of phase III protocols. (b) Always measure physical functioning, emotional functioning, symptoms (general and protocol specific), and global quality of life separately. (c) Include measures of social functioning and additional protocol-specific measures if resources permit. (d) Use patient-based questionnaires with psychometric properties that have been documented in published studies. In this review, we also recommend specific questionnaires. Our recommendations may prove useful for other cancer clinical trials groups and for multi-institution trials of treatment for chronic diseases.

Clinical Trials as Topic↗
PubMed2001

S.C.A.L.E.--spiritual care at life's end: a multi-disciplinary approach to end-of-life issues in a hospital setting.

End-of-life care is a hot topic in many hospitals of late, in part due to an aging society, which is forcing health care professionals to address the issue. A culture that places enormous value on youth and avoids the topic of death also contributes to the discomfort many health care professionals feel discussing this topic with their patients and family members. Inpatient satisfaction survey scores at Thunderbird Samaritan Medical Center (TSMC) were very inconsistent on the question of how the institution was meeting the emotional and/or spiritual needs of patients. A staff survey and needs assessment was also conducted regarding end-of-life care, which pointed out communication issues among staff members. All of these factors led to the development of an inter-disciplinary team to examine the issue of end-of-life care at TSMC.

Arizona↗
PubMed1996

Quality-of-life end points in cancer clinical trials: the U.S. Food and Drug Administration perspective.

Increasingly, quality-of-life (QOL) end points are being incorporated into randomized, controlled clinical trials in oncology. The Oncologic Drugs Advisory Committee (U.S. Food and Drug Administration) has recommended that beneficial effects on QOL and/or survival be the basis for approval of new anticancer drugs. Therefore, from a regulatory standpoint, for drugs that do not have an impact on survival, demonstration of a favorable effect on QOL is more important than most other traditional measures used to assess efficacy, such as objective tumor response. Trials incorporating QOL questions will be evaluated on the basis of how well they address the stated objectives. The clinical protocol should delineate investigators' hypotheses and choice of validated instruments and should specify a detailed statistical analysis plan describing strategies for handling missing data. The U.S. Food and Drug Administration welcomes the opportunity to explore with investigators the use of QOL instruments in the design of cancer clinical trials.

Antineoplastic Agents↗
PubMed1999

Quality-of-life end points in oncology drug trials.

Health-related quality of life (HRQL) is a multidimensional construct that represents the patient's perspective on valued aspects of health and functioning. Over the last several years, the pharmaceutical industry, as well as health care providers and the patient advocacy community, have shown increasing interest in HRQL as an outcome measure. Pharmaceutical companies and other sponsors of cancer clinical trials are seeking novel approaches with which to establish the benefits of treatment and to differentiate their products from other marketed products. Health care providers hope to provide cancer patients with therapies that positively affect their quality of life. To date, however, most oncology drug approvals have been based on traditional end points, such as survival and tumor response rate. This article will focus on some of the lessons learned from recent reviews of HRQL data and will describe some of the many challenges that lie ahead.

Clinical Trials as Topic↗
PubMed1987

The choice to end life as a ventilator-dependent quadriplegic.

A 17-year-old male sustained a C5/6 fracture dislocation and complete C5 quadriplegia in a diving accident. Three days later sensory and motor function deteriorated and he required mechanical ventilation. Surgical exploration found no cause and a fusion was done. Neurologic function stabilized after three weeks with a C1 sensory level, no neck movement, and slight weakness of the tongue. Patient and family were followed closely by the spinal cord injury rehabilitation team from onset of injury. The patient was transferred to the ventilator-dependent pediatric rehabilitation program after ten weeks. Bowel, bladder, skin, and nutritional management were stabilized and taught to his parents who remained with him constantly. Communication was achieved with a "talking tracheostomy." He learned to use "Sip-n-Puff" control for driving an electric wheelchair and for Morse code input to a computer. He was passive but cooperative during hospitalization. Eight months after injury he was discharged to his home, which had been modified to meet his needs. A computer word processor, environmental control unit, and modified van were obtained; nursing care was provided around the clock. The patient enrolled in a community college course. Soon after discharge he contacted an attorney to explore legal actions for ending his life, which he considered intolerable. After obtaining medical and psychiatric reports, a court order was issued, which established his legal competence and directed people taking care of him to follow his directions. A few weeks later, 25 months after his injury, he privately said goodbye to his family, asked to be disconnected from the ventilator, and died. Medical and legal issues raised by this case are discussed.

Accidents↗
PubMed2001

Secondary amyloidosis as a life-ending event in multifocal motor neuropathy.

Multifocal motor neuropathy (MMN) is a disorder of peripheral nerve often associated with a high monosialoganglioside (GM1) antibody and multifocal conduction block. It has a chronic, indolent course with involvement of predominantly peripheral motor nerves, usually in an asymmetric fashion. There have been few reported cases of progression to frank quadriplegia. Secondary amyloidosis refers to the deposition of amyloid in various tissues due to an underlying chronic inflammatory state. We report the first case, to our knowledge, of a patient with MMN associated with high titer of GM1 antibody who developed acute paraplegia with both cranial nerve and worsening sensory involvement associated with multiorgan compromise due to a secondary amyloidosis involving the myocardium.

Amyloidosis↗