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Assessing symptoms of terminally-ill patients by different raters: a prospective study.

OBJECTIVE: For patients who are terminally ill, the efficiency of symptom management is dependent, among other factors, on an accurate assessment by proxy raters. The aim of this prospective study is to describe differences in symptom severity ratings between patients and their nurses, physicians, and family members during their stay in different departments with acute care, and to identify variables associated with the accuracy of the ratings by others. METHODS: Physical, psychological, social, and functional disorders were assessed for 41 in-patients with a standardized 13-item Symptom List for Quality Assurance in Palliative Care drafted by the Working Group on the Core Documentation for Palliative Care Units in Germany. Symptom assessment was completed by different raters (patient, nurse, physician, family member) within the first four days after admission. Socio-demographic, disease-related, and hospitalization data were taken from patient charts. RESULTS: Reliability of the symptom list was computed with Cronbach's alpha measures for the present sample. Between-group-comparisons on the individual items and on the sum-score level were analyzed separately for the different rater-pairs: patients-nurses (n = 41), patients-physicians (n = 39), patients-family members (n = 12). Multiple regression analyses calculated predictive variables of the staff's deviation scores. SIGNIFICANCE OF RESULTS: Significant differences for nurses and physicians were found on the sum-score level for psychological and social symptoms, but not for physical and functional symptoms. Family members rated the intensities of the symptoms generally higher than the patients. Suggestions for further analyses are presented and discussed.

Activities of Daily Living↗

Suitable screening tests for cognitive impairment and depression in the terminally ill--a prospective prevalence study.

Although confusional states and depression are common accompaniments of advanced cancer, few objective data are available concerning the prevalence of these clinical states or what methods are most suitable for their accurate detection. We decided that a 10-question Abbreviated Mental Test Score (AMTS) and a semistructured application of modified DSMIII-R (Diagnostic and Statistical Manual of Mental Disorder, third edition-revised) criteria for a major depressive illness were the most suitable screening tests for a terminally ill population. Thirty of 87 patients (34%) displayed significant cognitive impairment. The AMTS rating declined with approaching death and also correlated negatively with age. Of 81 patients, 21 (26%) were depressed when screened using DSMIII-R criteria for depression. One-third of patients with impaired AMTS scores also satisfied DSMIII-R criteria for depression. Of cognitively impaired patients, 90% had at least two possible causes for their confused state. We have found that both the AMTS and semistructured interview using DSMIII-R criteria for depression are useful routine screening tests in the terminally ill.

Adult↗

Improved accuracy of physicians' survival prediction for terminally ill cancer patients using the Palliative Prognostic Index.

The Palliative Prognostic Index (PPI) has recently been developed for survival prediction in terminally ill cancer patients. To clarify whether physicians' clinical prediction of survival (CPS) can be improved using this objective assessment aid, two sequential prospective studies were performed on two independent series of hospice inpatients (n = 150 and 108). In the first study, the CPS was prospectively recorded by primary physicians on the basis of their clinical experiences. In the second study, physicians estimated patient prognoses with a reference to the PPI score. The cases where the differences between actual survival (AS) and CPS were 28 days or longer significantly decreased in the second study compared to the first study (42% vs 23%, P < 0.01). Also, the cases where AS was either twice longer or half shorter than CPS significantly declined (49% vs 37%, P = 0.050). As well, serious errors, defined as the cases where AS was either (a) 28 days and twice longer than CPS or (b) 28 days and half shorter than CPS, significantly decreased from 27% in the first study to 16% in the second study (P = 0.028). In conclusion, the PPI can contribute to improvement in physicians' ability to predict survival of terminally ill cancer patients.

Acute Disease↗

"Are you depressed?" Screening for depression in the terminally ill.

OBJECTIVE: This study compared the performance of four brief screening measures for depression in a group of terminally ill patients. The methods included 1) a single-item interview assessing depressed mood, 2) a two-item interview assessing depressed mood and loss of interest in activities, 3) a visual analog scale for depressed mood, and 4) the Beck Depression Inventory-Short Form. METHOD: Semistructured diagnostic interviews for depression were administered to 197 patients receiving palliative care for advanced cancer. The interview diagnoses served as the standards against which the screening performance of the four brief screening methods was assessed. RESULTS: Single-item interview screening correctly identified the eventual diagnostic outcome of every patient, substantially outperforming the questionnaire and visual analog measures. CONCLUSIONS: Brief screening measures for depression are important clinical tools for terminally ill patients. For diagnostic purposes, however, they do not approach the validity of a single-item interview that asks, in effect, "Are you depressed?"

Aged↗

[The terminally ill patient. Grupo de Estudios de Etica Cliínica de la Sociedad Médica de Santiago].

The classification of a patient as terminally ill is based on an expert diagnosis of a severe and irreversible disease and the absence of an effective available treatment, according to present medical knowledge. Terminal diseases must not be confused with severe ones, since the latter may be reversible with an adequate and timely treatment. The physician assumes a great responsibility at the moment of diagnosing a patient as terminally ill. The professional must assume his care until the moment of death. This care must be oriented to the alleviation of symptoms and to provide the best possible quality of life. Also, help must be provided to deal with personal, legal and religious issues that may concern the patient.

Chile↗

The physician's role with the terminally ill patient.

The physician encounters many issues and problems when working with the terminally ill. It is important to remember that the most important aspect of care for the dying is to maintain open and honest communication among the doctor, the patient, and the family. In brief, the physician should play a major role in helping the dying patient. Open communication and support must be continually provided by the physician, both to the dying patient and to the family. All it takes, basically, is common sense and human compassion. No matter how often the physician treats dying patients, he or she should never be casual or matter-of-fact about death. Death should always command respect and awe, but it need never terrorize us or cause us to turn away from providing help to the dying patient. Those who care for the terminally ill may find, to their surprise, that great satisfaction can be derived from this work. One becomes enriched by observing the courage of many dying patients. Therein lies the challenge and the reward.

Disclosure↗

Support group programme for relatives of terminally ill cancer patients.

GOALS: In order to improve the support for family of terminally ill patients who cared for a dying relative at home, a project with a group programme was started. This article is an evaluation of the programme. The aims of this study were to describe the opinions of participants in a support group programme about the programme and how they felt they had benefited from it. PATIENTS AND METHODS: All subjects (n=39) who completed the programme answered five open-ended questions, and 12 of them were interviewed in semi-structured interviews that were analysed using the phenomenographic method. RESULTS: Three main categories were identified in the interviews: (1) Practical condition and external circumstance--which condition had to be met for participation in the programme. (2) Group effects--the subjects felt that the programme was helpful in several respects, they perceived the programme being an important complement to the palliative home care, they benefited from mutual experiences shared among group members, the programme was also beneficial to the patients and was perceived to have had a health-promoting effect on the relatives. (3) The disease--the issue of how much the patients disease affecting the relatives situation were raised in the groups. CONCLUSION: The results showed the value of the programme for relatives of terminally ill patients nursed in their home. The subjects emphasised the importance of the opportunity to meet people who are in a similar situation.

Adult↗

Opioid prescription for terminally ill outpatients in a district of northern Italy: a retrospective survey.

A retrospective survey of the opioid prescriptions issued for cancer outpatients (2125) of the Treviso district (Veneto Region, northern Italy) during the time period 1993-2000 was carried out with the specific aims to establish the rate of opioid prescription and verify whether terminally ill outpatients (1697) who had died by the end of December 2000 received adequate opioid prescription, as compared with the Defined Daily Doses (DDDs) of opioids suggested by the World Health Organization (WHO) for a standard population. For both women and men, the maximum rate of opioid prescription was at the age of beyond 90 years. Men were more prescribed than women between 60 and 79 years of age, whereas women were more prescribed than men beyond 90 years. Opioid prescriptions concerned only morphine, buprenorphine, and pentazocine. The Anatomical Therapeutic Chemical (ATC)/DDDs analysis of opioid prescriptions indicated that total opioid use increased about 1.7-fold between 1993 and 1996, mainly because of an increase (55.4%) in morphine prescriptions. Afterwards, total opioid use remained stable, with an estimated mean annual value of 108.2+/-6.4 DDDs/million inhabitants/day. Considering terminally ill outpatients who had died by the end of December 2000, oral morphine turned out to be the most commonly prescribed opioid (64% of patients) and, among the three opioids, pentazocine was more prescribed to older patients. From the comparison between the number of "expected opioid DDDs" (i.e. days for which patients should have been prescribed opioids at the WHO recommended DDDs) and the number of prescribed opioid DDDs (i.e. days for which patients had been offered adequate opioid treatment) for individual patients, it could be estimated that only 38.1% of opioid prescriptions were adequate and a mean of 55.8 DDDs of opioids per patient were not prescribed. The opioid prescription inadequacy increased with the length of time from first prescription to patient death. In addition, a questionnaire investigation, conducted in 2001 among general practitioners of the Treviso district to evaluate their attitudes toward opioid prescribing, evidenced insufficient knowledge of general practitioners in theory and use of opioid analgesics in cancer pain management. A total of 104 (32.5%) general practitioners responded and most of them feared opioid side effects, such as respiratory depression (49.6%), constipation (41.7%), and addiction (8.7%). Furthermore, many of the respondents considered opioids capable of reducing the patient length of life (22.2%) and inappropriate to treat pediatric patients (50.6%). About 44% of the respondents experienced external pressure by relatives of patients against opioid prescription and a majority of them (58.2%) considered the recently revised Italian legislation on opioid prescription ineffective for improving their prescribing pattern. In conclusion, present data show that the vast majority of terminally ill cancer outpatients in the Treviso district received inadequate opioid prescriptions in relation to either drug daily dosage or therapy duration. Misconceptions of general practitioners of the district about opioids could contribute to the inappropriate use of these analgesics in cancer pain management. As far as we know, the ATC/DDD methodology for the opioid prescription analysis used in this survey has not been applied before.

Adult↗

Terminal illness in a psychiatric patient--issues and ethics.

A woman with paranoid psychosis and terminal breast cancer refused palliative radiation, demanding pain-killers and permission to leave hospital to go into the mountains and die on her own. Was it ethical to allow her to do so, or should a court order have been sought to impose hospital treatment on her? Should she have been persuaded to accept hospital care? When do those in charge deem a terminally ill patient unable to understand the issues, and dictate treatment? Our aim in this article is to highlight a number of ethical matters regarding patient care, as well as to try and determine the role a hospice should play with regard to the terminally ill patient with associated psychiatric disorder.

Adult↗

Development of terminal cancer prognostic score as an index in terminally ill cancer patients.

Cancer patients, families, clinicians, and health-policy administrators need accurate information about the prognosis of survival of terminally ill cancer patients. The aim of this study was to compare survival times and prognostic factors, and develop a new prognostic index for terminally ill cancer patients. This prospective study was performed on 91 patients with solid tumor, and therefore, no longer subjects of anti-cancer therapy. Association was sought between survival times and a range of clinical characteristics. The median survival time of 91 terminal cancer patients was 54.0 days. Univariate analysis showed that 11 factors provide statistically significant prognostic survival information. Multivariate analysis adjusted for the primary tumor site demonstrated that severe anorexia (aRR 1.95, 95% C.I. 1.24-3.05), severe diarrhea (aRR 3.49, 95% C.I. 1.10-11.05), and mild confusion (aRR 1.94, 95% C.I. 1.15-3.27) are independent negative predictors of survival. The Terminal Cancer Prognostic score (TCP score), which was based on three predictors proved to be a significant predictor. The TCP score might be a useful index for predicting survival.

Adult↗

Euthanasia and depression: a prospective cohort study among terminally ill cancer patients.

PURPOSE: To study the association between depression and the incidence of explicit requests for euthanasia in terminally ill cancer patients. PATIENTS AND METHODS: A prospective cohort study was conducted on 138 consecutive cancer patients with an estimated life expectancy of 3 months or less, in the period between September 1999 and August 2003. At inclusion, participants completed the Hospital Anxiety and Depression Scale. To identify "depressed mood" we used a cutoff score of 20. Kaplan-Meier curves and Cox regression analyses were used to assess the association between depressed mood and the risk of a request for euthanasia. RESULTS: Of 138 patients, 32 patients had depressed mood at inclusion. Thirty patients (22%) made an explicit request for euthanasia. The risk to request euthanasia for patients with depressed mood was 4.1 times higher than that of patients without depressed mood at inclusion (95% CI, 2.0 to 8.5). CONCLUSION: Depression in cancer patients with an estimated life expectancy of less than 3 months is associated with a higher likelihood to request for euthanasia. The question of whether depressed mood can adequately be treated in this terminally ill population, and if so, whether it would lower the incidence of requests for euthanasia needs further investigation.

Adult↗

Results of antiemetic management in terminal illness.

A wide variety of causes may be responsible for nausea and vomiting in terminal illness. The different emetic stimuli reach the vomiting centre by a variety of pathways and can be blocked by specific antiemetics that act at the neurotransmitter receptor sites in these pathways. A knowledge of the neurotransmitter receptor antagonist potency of the different antiemetics allows the choice of the most appropriate antiemetic for the relief of the nausea and vomiting caused by a particular emetic stimulus. To demonstrate the efficacy of this approach to the management of nausea and vomiting in terminal illness, the outcome of antiemetic choice in 100 consecutive episodes is recorded.

Adult↗

Noninvasive approaches to pain control in terminal illness: the contribution of psychological variables.

Pain is a common problem for patients with terminal illnesses. The major efforts to control pain for these patients have focused on the appropriate uses of analgesic medication to reduce the sensory aspect of the pain experienced. There are a number of studies in the chronic pain literature, however, that have implicated the important role of a number of psychological factors in the maintenance and exacerbation of pain. Among the most important variables identified are expectancy, anxiety, perceived controllability, self-efficacy, symptom preoccupation, operant conditioning, classical conditioning, and observational learning. In this paper, these psychological variables are examined and their applicability to patients who have pain associated with terminal illnesses is discussed as well as the implications of these variables for complementary treatment with analgesic medications are described.

Conditioning, Classical↗

Association between hydration volume and symptoms in terminally ill cancer patients with abdominal malignancies.

BACKGROUND: To explore the association between hydration volume and symptoms during the last 3 weeks of life in terminally ill cancer patients. PATIENTS AND METHODS: This was a multicenter, prospective, observational study of 226 consecutive terminally ill patients with abdominal malignancies. Primary responsible physicians and nurses evaluated the severity of membranous dehydration (dehydration score calculated from three physical findings), peripheral edema (edema score calculated from seven physical findings), ascites and pleural effusion (rated as physically undetectable to symptomatic), bronchial secretion, hyperactive delirium (Memorial Delirium Assessment Scale), communication capacity (Communication Capacity Scale), agitation (Agitation Distress Scale), myoclonus and bedsores. RESULTS: Patients were classified into two groups: the hydration group (n=59) who received 1 l or more of artificial hydration per day, 1 and 3 weeks before death, and the non-hydration group (n=167). The percentage of patients with deterioration in dehydration score in the final 3 weeks was significantly higher in the non-hydration group than the hydration group (35% versus 14%; P=0.002), while the percentages of patients whose symptom scores for edema, ascites and pleural effusion increased were significantly higher in the hydration group than the non-hydration group (44% versus 29%, P=0.039; 29% versus 8.4%, P <0.001; 15% versus 5.4%, P=0.016; respectively). After controlling for multiple covariates and treatment settings, the association between hydration group and dehydration/ascites score was statistically significant. Subgroup analysis of patients with peritoneal metastases identified statistically significant interaction between hydration group and dehydration/pleural effusion score. There were no significant differences in the degree of bronchial secretion, hyperactive delirium, communication capacity, agitation, myoclonus or bedsores. CONCLUSIONS: Artificial hydration therapy could alleviate membranous dehydration signs, but could worsen peripheral edema, ascites and pleural effusions. It is suggested that the potential benefits of artificial hydration therapy should be balanced with the risk of worsening fluid retention symptoms. Further clinical studies are strongly needed to identify the effects of artificial hydration therapy on overall patient well-being, and an individualized treatment and close monitoring of dehydration and fluid retention symptoms is strongly recommended.

Abdominal Neoplasms↗

Assessment of the terminally ill patient with pain: the example of cancer.

Efforts to understand pain associated with terminal illness have been guided traditionally by the biomedical model in which psychological and environmental factors are considered incidental and not causally significant influences of pain. More recent conceptualizations of pain, however, recognize that pain can be affected by a variety of factors including mood, beliefs about pain, past learning, as well as physical perturbations. This development has led to assessment strategies that are more comprehensive, multidimensional, and less singularly aligned with a biomedical model. The greatest amount of attention to pain among the terminally ill has focused on cancer patients. Thus, in this paper we will describe a comprehensive, multi-dimensional assessment of cancer pain. Information regarding cancer and cancer pain is first presented and then a strategy for comprehensively assessing cancer pain is outlined. Recent developments in the assessment of cancer pain are briefly reviewed.

Humans↗

Patients and families go on with life when a terminal illness enforces hospitalization: an interpretive phenomenological study.

This interpretive phenomenological study explored patients' with a terminal illness and their family members' experiences of hospital end-of-life care. Findings show that patients and families led unique lives, and even when a terminal illness intruded and enforced a hospital stay, they held on to familiar practices. Patients and family members felt best cared for when healthcare providers supported them in their endeavors to go on with their usual life as much as possible. To achieve this, professionals are challenged to recognize patients and family members as persons and to integrate the latter's lived experiences in their care interventions.

Activities of Daily Living↗

A qualitative study of self-transcendence in caregivers of terminally ill patients.

Despite changes in social and cultural structure, the family has remained a consistent provider of in-home care needs for the chronically and terminally ill. The experience of a terminal illness is not limited to the individual patient and creates a myriad of challenges for the family, including the struggle to adjust and respond to the demands of the situation. The purpose of this study was to assess the caregivers' sense of emotional well being and their ability to transcend and find meaning in the caregiving experience. The participants in this study were all caregivers of a family member who had died six to 12 months prior to the interview. They were able to find meaning as a result of their caregiving experience within the context of supportive networks, caregiving actions, grief and loss, fatigue, financial burdens and multiple challenges. Finding meaning involved "being with" or "doing for" their loved one as death approached. Finding meaning had positive consequences for the caregivers. They described a new life view and were able to reach out to help others as a result of their caregiving.

Adaptation, Psychological↗

An exploratory factor analysis of existential suffering in Japanese terminally ill cancer patients.

To determine an underlying factorial structure of existential distress in Japanese terminally ill cancer patients, a principal components analysis was performed on 162 Japanese hospice inpatients. Existential distress commonly identified was dependency (39%), meaninglessness in present life (37%), hopelessness (37%), burden on others (34%), loss of social role functioning (29%), and feeling emotionally irrelevant (28%). By a factor analysis, three primary components accounted for 66% of the variance. 'Dependency' and 'loss of social role functioning' loaded highly on the first factor, which was interpreted as 'loss of autonomy'. 'Burden on others' and 'feeling emotionally irrelevant' loaded highly on the second component interpreted as 'lowered self-esteem', while 'hopelessness' loaded highly on the third factor. On the other hand, 'meaninglessness in present life' loaded equally on all three components, and was significantly associated with other distress. In conclusion, existential suffering of Japanese terminally ill cancer patients has three principal components: loss of autonomy, lowered self-esteem, and hopelessness. It is also suggested that meaninglessness in present life would be an underlying theme in patients' spirituality.

Adult↗