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PubMedDate not supplied

Concordance of quality-of-life assessments between terminally ill cancer patients and their primary family caregivers in Taiwan.

Physical or cognitive deterioration may hamper the ability or willingness of cancer patients to participate and remain in quality-of-life (QOL) research at the end of life. Use of family caregivers as proxy informants to report patients' QOL has been suggested as a way of resolving the problem of nonresponse bias and nonrandom missing data in end-of-life research. However, there is a dearth of information in the literature about the extent of concordance of QOL assessments between terminally ill patients and their family caregivers outside Western countries. A prospective and descriptive study was conducted to fill the gap in the literature. Results from 114 dyads of Taiwanese terminally ill cancer patients and their family caregivers indicated that QOL assessments from family informants agreed at least moderately well with patients' QOL reports. None of the standardized absolute mean differences for individual items and composite (sub)scales between the 2 respondents exceed the threshold of moderate (>0.50) set by Cohen. Generally, when discrepancies existed, family caregivers held a more negative view of patients' QOL than did patients. At the individual patient level, family caregivers were best able to assess functional dependency, followed by symptom distress, but were least reliable when evaluating the psychological-social-spiritual concerns of patients. The conclusion made by Western researchers that family caregivers can act as a not perfect but reliable alternative source of QOL data for terminally ill cancer patients who are no longer able to speak for themselves is cross-culturally confirmed in this study. It is suggested from the findings that, for family caregivers to function well in their role as proxy informants on the psychological reactions and social/spiritual domains of QOL as well as surrogate decision makers for terminally ill cancer patients in Asian countries, an open and frequent dialogue between terminally ill cancer patients and their family caregivers should become standard.

Activities of Daily Living↗
PubMed1999

Terminally ill patients' and lay-carers' perceptions and experiences of community-based services.

This paper reports on terminally ill patients' and their lay-carers' perceptions and experiences of community-based services. It forms part of a larger investigation which examined the extent of service provision and any perceived gaps and problems from the perspectives of both clients and providers of community-based assistance for the terminally ill. The participants were nine terminally ill patients and 12 lay-carers receiving community nursing care. Fifteen face-to-face, semi-structured interviews were conducted to elicit their experiences and perceptions of the care being provided. Qualitative, thematic analysis was carried out on the audio-taped interviews. On the whole, respondents reported a high level of satisfaction and appreciation for the help provided. Several areas appeared more problematic, however, and warrant further consideration. These include perceptions of health professionals, particularly their role domains, power and expertise, and some of the practical disadvantages and problems faced by some patients and their families. These are illustrated and the implications for dying patients, their lay-carers and community-based health professionals are discussed.

Adult↗
PubMedDate not supplied

Terminally ill cancer patients. Their most important concerns.

PURPOSE: When the goal of treatment is palliative, the most important outcome is improving patient quality of life. The authors describe the major concerns of terminally ill cancer patients with a prognosis of 6 months of less. OVERVIEW: In phase I of this three-part study, 74 terminally ill patients were interviewed to identify their major concerns. In phase II, interviews with 120 terminally ill cancer patients showed that their most important concerns encompass existential, spiritual, familial, physical, and emotional issues. Phase III will determine the validity and reliability of a quality-of-life scale based on these patients' most important concerns. The information presented here summarizes the results of interviews from phases I and II. CLINICAL IMPLICATIONS: Patients were receptive to being interviewed and remarked on the relevance and importance of these issues to their own experience. Several patients commented that although their disease was assessed and reassessed throughout their care, the existential, spiritual, familial, and emotional aspects of their illness rarely were a focus of their care. Healthcare professionals can create an atmosphere in which these patients feel comfortable exploring the quality-of-life issues that are most important to them. The systematic assessment of patient concerns about quality of life may complement disease assessment and facilitate referrals to appropriate members of the healthcare team. The wide range of concerns reported suggests that a team approach, including physicians, nurses, social workers, psychiatrists, psychologists, and chaplains, is the most effective way to meet the needs of terminally ill patients.

Attitude to Health↗
PubMed2004

Good and bad dying from the perspective of terminally ill men.

BACKGROUND: Understanding the range of patients' views about good and bad deaths may be useful to clinicians caring for terminally ill patients. Our current understanding of good and bad deaths, however, comes primarily from input from families and clinicians. This study aimed to learn how terminally ill men conceptualize good and bad deaths. METHODS: We conducted semistructured interviews with 26 men identified as having terminal heart disease or cancer. Participants described good and bad deaths in a section of open-ended questions. Participants also answered closed-ended questions about specific end-of-life scenarios. The open-ended questions were tape recorded, transcribed, and analyzed using grounded theory methods. The closed-ended questions were analyzed using descriptive statistics. RESULTS: We found heterogeneity in responses to questions about good deaths, bad deaths, and preferred dying experiences. Participants voiced multiple reasons for why dying in one's sleep led to a good death and why prolonged dying or suffering led to a bad death. Participants did not hold uniform views about the presence of others at the very end of life or preferred location of dying. CONCLUSIONS: In discussing the end of life with terminally ill patients, clinicians may want to identify not only their patients' views of good and bad deaths but also how the identified attributes contribute to a good or bad death. The discussion can then focus on what might interfere with patients' attainment of their preferred dying experience and what may be available to help them achieve a death that is most consistent with their wishes.

Aged↗
PubMed1989

Educational needs of the terminally ill student.

It is the norm for medical professionals to encourage school reentry for the terminally ill student. Their commitment to and belief in the benefits of school involvement are to be commended. It is essential, however, that the hospital staff be directly involved with facilitating school reentry. Research into the needs of chronically and terminally ill students has historically been done by the medical community. Educators lack basic knowledge and the expertise to ensure that the school experience will be successful. It is hoped that the educational community will become more aware and actively seek to guarantee that every child is provided with an appropriate education in future years. For the time being, however, the medical professional must assume the role of coordinator, bringing together the terminally ill child, parents, peers, and educators, and fostering open, ongoing communication between all. The success of these efforts will bring about healthy attitudes toward death and dying; a rich, rewarding experience for all children involved; and ultimately an opportunity for a dying child to live life to its fullest.

Adolescent↗
PubMed2006

The role of physical and psychological symptoms in desire for death: a study of terminally ill cancer patients.

The current study assessed the attitudes of the desire for hastened death in terminally ill cancer patients and whether these are determined by their physical and psychological symptoms. The final sample consisted of 106 terminally ill cancer patients attending a Palliative Care Unit, in University of Athens, Greece, between June and October 2004. Significant associations were found between the desire for hastened death (D.H.D.) and 'pain' (r=0.469, p<0.005), 'fatigue' (r=0.591, p<0.0005), 'loss of appetite' (r=0.622, p<0.0005) and 'feeling sad' (r=0.635, p<0.0005). Statistically significant associations were also found between Schedule of Attitudes towards Hastened Death (SAHD) scores, age (r=0.300, p=0.002) and ECOG (p<0.0005). Twenty-six percent of the patients reported high D.H.D. while 41% reported moderate desire. In the prediction of SHAD the contribution of 'pain' (p=0.011), 'lack of appetite' (p=0.012) and 'sadness' (p=0.011) is high (42% of variance). Further findings suggest that D.H.D. is significantly related to 'feeling sad', 'lack of appetite', 'pain' and 'fatigue' after controlling for age, gender and performance status according to ECOG in terminally ill cancer patients.

Adult↗
PubMed1995

How do nurses inspire and instil hope in terminally ill HIV patients?

In this study the researcher examined how nurses inspire and instil hope in terminally ill HIV patients. The study therefore focuses on the interventions, attitudes, principles and process utilized by nurses working within a liaison psychiatry unit where in-patient care for terminally ill HIV patients is available. Using grounded theory methodology, the data were coded and analysed, producing an integrated theory of hope inspiration, comprised of four core variables: reflection in action; affirmation of worth; creating a partnership; and the totality of the person. The researcher postulates that hope is inspired in terminally ill HIV patients by means of nursing the totality of the person within the context of a formed partnership, underpinned by the affirmation of the individual's worth, which is assured by the nurse entering into the process of reflection in action. The researcher further suggests that hope inspiration is inextricably linked to effective nursing practice, and is interwoven with the concepts of nursing, caring and helping.

HIV Infections↗
PubMed2004

The schedule of attitudes toward hastened death: validation analysis in terminally ill cancer patients.

OBJECTIVE: The faithful translation of the English version of the Schedule of Attitudes toward Hastened Death (SAHD) into Greek and its validation as an assessment tool in terminally ill cancer patients receiving palliative treatment. METHODS: 120 terminally ill cancer patients attending a Palliative Care Unit, at the University of Athens, Greece, between June 2003 and November 2003 for palliative treatment. RESULTS: SAHD would be a useful instrument for measuring desire for hastened death with valid psychometric properties in a Greek cancer population. The SAHD demonstrated high reliability. Desire for hastened death was significantly associated with Hospital Anxiety and Depression Scale (HAD) depression (r = 0.607, p < 0.0005) and substantially correlated with HAD anxiety (r = 0.502, p < 0.0005). "Pain intensity" had a moderate correlation with SAHD scores (r = 0.28, p = 0.01) and SAHD scores correlated significantly with "pain interference in mood" (r = 0.38, p = 0.01) and in "enjoyment of life" (r = 0.34, p = 0.03). SAHD correlation with quality of life was statistically significant (r = -0.38, p < 0.01) as was health status (r = -0.36, p < 0.01). Patients with a Poor Performance Status (from Eastern Cooperative Oncology Group scale) correlated significantly with high scores in SAHD (p = 0.038). Factor analysis supported the unidimentionality of the measurement. SIGNIFICANCE OF RESULTS: SAHD could be a useful and valid instrument for measuring desire for hastened death in Greek terminally ill cancer patients.

Adult↗
PubMed2005

Intentions to work during terminal illness: an exploratory study of antecedent conditions.

Facing a terminal illness is an unimaginably difficult experience, yet many individuals intend to work despite their prognosis. However, research has not systematically examined the potential antecedents underlying such intentions. Using behavioral intention theory as an underlying framework, this study hypothesized that reasons for working (intrinsic and extrinsic), the will to live, disability severity, accessibility of travel, and age would predict intentions to work during terminal illness. A representative sample of medically diagnosed amyotrophic lateral sclerosis (a.k.a. Lou Gehrig's disease) patients with a mean life expectancy of approximately 3 years participated (mean age=57.8 years). Controlling for length of diagnosis, employment status, and demographic variables, results indicated that intrinsic reasons were particularly strong predictors of intentions, followed by age, disability severity, and accessibility of travel. Exploratory findings also indicated that behavioral intentions were positively related to future employment status, consistent with past theory. ((c) 2005 APA, all rights reserved).

Adaptation, Psychological↗
PubMed1996

Psychiatric morbidity in terminally ill cancer patients. A prospective study.

BACKGROUND: In the study by Derogatis et al., which included patients with all stages of cancer, 47% of the patients met the DSM-III criteria for a psychiatric disorder, with adjustment disorders being the most common. Although the cancer stage is one factor that influences the nature and incidence of psychiatric disorders, no study has demonstrated the extensive range of psychiatric disorders in terminally ill cancer patients. METHODS: Ninety-three terminally ill cancer patients were systematically assessed using the Mini-Mental State Examination (MMSE) and Structured Clinical Interview for DSM-III-R (SCID) within 1 week of admission. RESULTS: Of this sample population, 53.7% met the DSM-III-R criteria for a psychiatric disorder and 42% had a cognitive impairment. Delirium was observed in 26 patients (28%), dementia in 10 (10.7%), adjustment disorders in 7 (7.5%), amnestic disorder and major depression in 3 (3.2%), and a generalized anxiety disorder in 1 (1.1%). CONCLUSIONS: This preliminary investigation of the prevalence of psychiatric disorders in terminally ill cancer patients showed that more than half of the patients met the criteria for a DSM-III-R psychiatric disorder; delirium was the most common type of psychiatric disturbance. Further prospective trials are critically important to establishing treatment modalities that promote the psychiatric well-being of patients with terminal illnesses.

Aged↗
PubMed2003

Effect of spiritual well-being on end-of-life despair in terminally-ill cancer patients.

BACKGROUND: The importance of spirituality in coping with a terminal illness is becoming increasingly recognised. We aimed to assess the relation between spiritual well-being, depression, and end-of-life despair in terminally-ill cancer patients. METHODS: 160 patients in a palliative care hospital with a life expectancy of less than 3 months were interviewed with a series of standardised instruments, including the functional assessment of chronic illness therapy-spiritual well-being scale, the Hamilton depression rating scale, the Beck hopelessness scale, and the schedule of attitudes toward hastened death. Suicidal ideation was based on responses to the Hamilton depression rating scale. FINDINGS: Significant correlations were seen between spiritual well-being and desire for hastened death (r=-0.51), hopelessness (r=-0.68), and suicidal ideation (r=-0.41). Results of multiple regression analyses showed that spiritual well-being was the strongest predictor of each outcome variable and provided a unique significant contribution beyond that of depression and relevant covariates. Additionally, depression was highly correlated with desire for hastened death in participants low in spiritual well-being (r=0.40, p<0.0001) but not in those high in spiritual well-being (r=0.20, p=0.06). INTERPRETATION: Spiritual well-being offers some protection against end-of-life despair in those for whom death is imminent. Our findings have important implications for palliative care practice. Controlled research assessing the effect of spirituality-based interventions is needed to establish what methods can help engender a sense of peace and meaning.

Aged↗
PubMed2000

Primary care services received during terminal illness.

The World Health Organization (1990) provides guidelines on what constitutes effective palliative care. However, it remains unclear whether people with a terminal illness living in their own homes have access to the services they need. This article reports on a study carried out in the United Kingdom on the views of people with a terminal illness (n = 15), their lay carers (n = 10) and bereaved carers (n = 19). Participants were asked about the primary care services they had received and their views on both helpful and unhelpful aspects of service provision. All terminally ill people in the study (except one) had cancer, which raises questions about access to palliative care services for non-cancer populations. Participants had contact primarily with district nurses, general practitioners and Macmillan nurses (specialist nurses). Few other services were received. A number of important issues arose from the data, indicating that lay carers in particular were not always receiving the information and support they needed in order to be effective caregivers.

Attitude to Health↗
PubMed2004

Determinants of death in an inpatient hospice for terminally ill cancer patients.

OBJECTIVE: Despite the strong emphasis on home-based end-of-life care in the United States and the recognition of dying at home as a gold standard of quality of care, hospice home care is not a panacea and death at home may not be feasible for every terminally ill cancer patient. Admission to an inpatient hospice and dying there may become a necessary and appropriate solution to distressing patients or exhausted families. However, the factors associated with death in an inpatient hospice have not been examined in previous studies. METHODS: A prospective cohort study was conducted to investigate the determinants of death in an inpatient hospice for terminally ill cancer patients. Approximately two-fifths (40.8%) of the 180 terminally ill cancer patients in this study died in inpatient hospices over the 3-year study period. RESULTS: Results from Cox proportional hazards model with adjustment for covariates revealed several factors that were significantly associated with dying in inpatient hospice, as opposed to home, in a nursing home, or in the hospital. Patients were more likely to die in an inpatient hospice if they received hospice care before death (hazard ratio [HR] = 7.32, 95% confidence interval [CI]: 3.21-16.67), if they had a prestated preference to die in an inpatient hospice (HR = 4.86, 95% CI: 2.24-10.51), if they resided in New Haven County (HR = 1.70, 95% CI: 1.00-2.93), or if they experienced higher levels of functional dependency (HR = 1.05, 95% CI: 1.02-1.08). SIGNIFICANCE OF RESULTS: The high prevalence of inpatient hospice deaths for terminally ill cancer patients in this study was related to the local health care system characteristics, health care needs at the end of life, and personal preference of place of death. Findings from this study may shed light on future directions for developing end-of-life care tailored to the needs of cancer patients who are admitted to hospices and eventually die there.

Attitude to Death↗
PubMed1979

Experience with a hospice-care program for the terminally ill.

A hospice-care program offers an opportunity to provide effective palliative care for patients terminally ill with malignant disease and to develop improved methods for coping with the problems of the dying patient. All patients for whom antitumor therapy does not offer a reasonable possibility of cure are eligible for Church Hospital's multidisciplinary program, the focus of which is on both the patient and his family. Acceptance by medical staff, patients and families has been enthusiastic. Both conventional and unconventional methods can be helpful in making terminally ill patients more comfortable. Much has been learned about the control of pain in such patients. Intestinal obstruction can often be managed non-operatively without the use of nasogastric tube. Other common symptoms such as weakness, anorexia, depression, dyspnea, etc. can be relieved with varying degrees of success. An objective of the program is to allow the patient to be at home for most of his terminal illness and to die there if possible. By utilizing patient and family instruction, visiting nurses and home health aides, approximately two-thirds of the patients in the program at any given time are at home. Basing the program in an acute care hospital has allowed coordination with the curative treatment of malignant disease and effective use of radiation and chemotherapy for palliative purposes. The organizational structure, financing, facilities and clinical experience with 100 consecutive patients of the Church Hospital hospice-care program are described.

Adolescent↗
PubMed1994

Clinical prediction of survival is more accurate than the Karnofsky performance status in estimating life span of terminally ill cancer patients.

Predicting the survival of terminally ill cancer patients can help in informing patients and their families, in programming therapy and assistance models, and in utilising existing resources correctly. Clinical prediction of survival (CPS) and Karnofsky performance status (KPS) are two factors which have already been described in the literature. The aim of our study was to verify their respective predictive value with regard to actual survival. In our study of 100 consecutive patients, the CPS obtained a higher prediction accuracy than that reported previously (correlation coefficient with actual survival = 0.51) and than that obtained with KPS alone (correlation coefficient = 0.37). The median difference between predicted and expected survival was only 1 week. The resultant predictivity could be further improved by integrating other prognostic factors studied in larger prospective, multicentric studies.

Adolescent↗
PubMed1989

Use of Omiderm in treatment of low-degree pressure sores in terminally ill cancer patients.

Skin management, prevention, and treatment of pressure sores is a difficult problem in the care of the terminally ill patient. These terminally ill patients have certain risk factors that make them prone to pressure sores and hinder wound healing. Sixteen patients with 22 noninfected first- and second-degree pressure sores were treated using a polyurethane-based dressing (Omiderm). Each patient's condition in relation to weight was graded and the type of skin was noted. The wounds were measured and their areas were calculated. Seventy percent of the wounds either healed completely or improved by more than 50% by the end of treatment. The average healing time for wounds that healed completely (12 of 22) was 5.9 days (SD = 1.6). Prevention of contamination was achieved in all cases. Patients frequently commented that they experienced relief from pain on application of the dressing. The nursing staff was very satisfied with the procedure. In light of these findings, it was concluded that Omiderm is a convenient and satisfactory dressing, to be used in the treatment of first- and second-degree pressure sores.

Aged↗
PubMed2004

Hopelessness and terminal illness: the construct of hopelessness in patients with advanced AIDS.

OBJECTIVE: Understanding the construct of hopelessness in the context of a life-threatening or terminal illness is a complex and challenging undertaking. The objective of this study was to examine the construct of hopelessness in patients with advanced AIDS by examining the structure of the Beck Hopelessness Scale in this specific population. METHODS: For the past three decades, the primary measure used to study hopelessness in a variety of populations has been the Beck Hopelessness Scale. Several factor analytic studies have been published using this scale, with studies of nonclinical samples typically describing a two-factor model (optimism and pessimism), whereas clinical samples have consistently generated a third factor (lack of motivation to make changes). We used confirmatory factor analysis to analyze two data sets in patients with AIDS. RESULTS: Confirmatory factor analysis of the Beck Hopelessness Scale in two samples of patients with far advanced AIDS revealed a clear superiority for a three-factor model. SIGNIFICANCE OF RESULTS: The Beck Hopelessness Scale has unique characteristics when applied to a terminally ill population. The implications of these results for studies of terminal illness are discussed.

Acquired Immunodeficiency Syndrome↗
PubMed1999

How effective are supplementary doses of opioids for dyspnea in terminally ill cancer patients? A randomized continuous sequential clinical trial.

Supplementary doses of opioids are recommended to relieve dyspnea in terminally ill cancer patients. We conducted a randomized continuous sequential clinical trial to evaluate their efficacy. We recruited 33 terminally ill cancer patients from three palliative care centers, all of whom had persistent dyspnea after rest and treatment with oxygen. Patients formed 15 successive pairs matched on route of administration. Within each pair, the order of allocation was randomly assigned, one patient receiving 25%, the other 50% of his 4-hourly opioid dose. Five measurements of dyspnea intensity and respiratory frequency were made during 4 hours of follow-up. For each pair, a preference was attributed to the more effective regimen. The two regimens received an almost equal number of paired preferences (8 vs. 7). Overall, both mean dyspnea intensity and respiratory frequency decreased significantly relative to baseline. Dyspnea reduction was relatively greater in patients with initially low and moderate dyspnea intensity. In terminally ill cancer patients with persistent dyspnea, 25% of the equivalent 4-hourly dose of opioid may be sufficient to reduce both dyspnea intensity and tachypnea for 4 hours.

Analgesics, Opioid↗