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PubMed2005

Remote psychotherapy for terminally ill cancer patients.

We conducted a feasibility study of remote psychotherapy in 10 terminally ill cancer patients with diagnoses of adjustment disorder or major depression. Subjects received six sessions of individual cognitive therapy with the same therapist. Sessions alternated between face-to-face sessions and remote sessions delivered by analogue videophone. After each therapy session, a brief questionnaire was used to evaluate the subjects' level of satisfaction with the session, sense of connectedness to the therapist and overall progress being made in the therapy. Nine patients completed the study. Of 53 completed therapy sessions, 21 were by videophone and 32 were conducted face to face. Participants reported strong positive perceptions and acceptance after almost all therapy sessions, regardless of service delivery mode. The study suggests that there may be a role for the delivery of psychotherapy using low-bandwidth videophones.

Adjustment Disorders↗
PubMed2001

A molecular epidemiological study of sequential oral isolates of Candida albicans from terminally ill patients.

The pattern of candidal colonisation was studied in a group of terminally ill patients receiving antifungal treatment for oral candidosis. A total of 43 isolates of C. albicans was collected pre- and post-antifungal treatment from patients up to a maximum period of 4 weeks. Isolates were analysed by electrophoretic karyotyping (EK) and by inter-repeat polymerase chain reaction (IR-PCR). Fifteen electrophoretic karyotypes and 17 IR-PCR profiles were identified. Sequential isolates from 10 patients yielded identical profiles in both EKs and IR-PCR analyses. In the case of four patients, minor differences in the profiles were obtained by either EK or IR-PCR. The findings suggest that antifungal treatment in this patient group fails to eradicate the original C. albicans strain, thereby allowing recolonisation of the oral cavity. The present study has also shown that either EK or IR-PCR is a useful typing approach in such epidemiological investigations.

Antifungal Agents↗
PubMed1999

The impact of hospice inpatient care on the quality of life of patients terminally ill with cancer.

This study explored the expectations and experiences of patients with terminal cancer in a hospice inpatient environment in an attempt to evaluate their quality of life and the impact of the care and services provided. A total of 52 patients terminally ill with cancer from 11 hospice units in Hong Kong participated in the study. Data were collected from patients by devising a Hospice Care Performance Inventory (HCPI), which was an interview schedule consisting of 25 items. The HCPI was developed after a review of the literature on the quality of life experienced by patients with advanced cancer and the aims of hospice units in Hong Kong. Each item was rated by the patient on a Likert scale in terms of its importance and the perceived effectiveness of the care provided. The study identified six issues in which expectations did not seem to match effectiveness. These issues indicated areas in which improvement could be attempted to enhance the quality of life for the patients. The most important was maximizing self-care and mobility. Two issues were identified in which effectiveness was high and importance to the patient relatively low. One of these issues was pain management, and the other was spiritual care.

Adaptation, Psychological↗
PubMed2002

The ethics of withdrawing artificial food and fluid from terminally ill patients: an end-of-life dilemma for Japanese nurses and families.

End-of-life issues have become an urgent problem in Japan, where people are among the longest lived in the world and most of them die while connected to high-technology medical equipment. This study examines a sensitive end-of-life ethical issue that concerns patients, families and nurses: the withdrawal of artificial food and fluid from terminally ill patients. A sample of 160 Japanese nurses, who completed a questionnaire that included forced-choice and open-ended questions, supported this act under only two specific conditions: if the patient requested it, and if it relieved the patient's suffering. They considered that the doctor's orders, the family's request, or the patient's advanced age did not ethically justify this act. A small number of people who had recently lost a relative took part in semistructured interviews focusing on their experiences of their terminally ill relatives being given artificial food and fluid. Ethical, social and cultural factors surrounding this issue are discussed.

Adult↗
PubMed2005

Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan.

There is a dearth of information in the literature about the concordance of preferences for end-of-life care between terminally ill patients and their family surrogates outside the Western countries. The purpose of this study was to examine the extent of concordance in preferences for end-of-life care goals and life-sustaining treatments between Taiwanese terminally ill cancer patients and their primary family caregivers. A total of 617 dyads of patients-family caregivers across 21 hospitals throughout Taiwan were surveyed. Overall agreements on the goals for end-of-life care and preferences for initiating life-sustaining treatments ranged from 62.4% to 96.9% (average: 71.0%). Kappa values for the extent of concordance ranged from 0.13 to 0.46 (average: 0.29), indicating poor to moderate consistency in personal preferences. Family caregivers had a significantly more aggressive attitude toward each examined life-sustaining treatment for their ill family members than the patients' own stated preferences. In societies, such as in Asian countries, where physicians' respect for patient autonomy is frequently subordinate to the power of family, disagreements between a patient and family about end-of-life care may result in the patient's preferences being overridden at the end of life. To effect real change and to gain increased agreement on preferences for end-of-life care, an open dialogue between patients and their primary family caregivers should become standard.

Adult↗
PubMed2005

Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers.

BACKGROUND: It is challenging for clinicians to foster coping and allow hope when discussing prognosis and end-of-life (EOL) issues with terminally ill cancer patients and their caregivers. To the authors' knowledge, little research evidence is currently available to guide clinical practice. METHODS: The authors conducted focus groups and individual interviews with 19 patients with far advanced cancer and 24 caregivers from 3 palliative care (PC) services in Sydney, and 22 PC health professionals (HPs) from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Additional focus groups or individual interviews were conducted until no additional topics were raised. The participants' narratives were analyzed using qualitative methodology. RESULTS: All participant groups believed there were ways of fostering coping and nurturing hope when discussing prognosis and EOL issues. Themes identified from the transcripts regarding ways of helping patients with a limited life expectancy to cope were: 1) emphasize what can be done (namely: a) control of physical symptoms; b) emotional support, care, and dignity; and c) practical support), 2) explore realistic goals, and 3) discuss day-to-day living. Two additional themes were identified regarding ways of fostering hope: the balance between truth telling and nurturing hope, and the spectrum of hope. All these themes were raised by the patients, caregivers, and HPs. However, there were some differences of opinion within the three participant groups. CONCLUSIONS: The results of the current study demonstrated that most participants believed there were ways of fostering coping and maintaining hope and that HPs have a role in facilitating this with terminally ill cancer patients and their caregivers.

Adult↗
PubMed2003

Professionally perceived effectiveness of psychosocial interventions for existential suffering of terminally ill cancer patients.

BACKGROUND: Although integrated care for existential suffering is an essential part of palliative care, little is known about its concept and efficacy as perceived by professionals. A questionnaire survey was carried out to 1) explore the underlying structure of psychosocial interventions recommended by specialists, 2) identify the professionally perceived effectiveness of each intervention for specific existential distress, and 3) examine the effects of specialty on their recommendations. METHODS: A questionnaire with three scenarios representing terminally ill cancer patients with uncertainty-related anxiety, guilt feelings, and dependency-related meaninglessness was mailed to 701 Japanese psychiatrists, 118 psychologists, and 372 palliative care nurses. RESULTS: A total of 456 responses were obtained (response rate = 38%). Recommended psychosocial interventions were classified into six subcategories: 'a supportive-expressive approach,' 'providing comfortable environments,' 'meaning-centered approach,' 'being,' 'education and coping skills training,' and 'a religious approach.' A 'supportive-expressive approach' was consistently recommended in all vignettes. On the other hand, 'providing comfortable environments' was most recommended for patients with uncertainty-related anxiety, and a 'meaning-centered approach' and 'being' were most recommended for patients feeling dependency-related meaninglessness. Psychiatrists estimated the effectiveness of psychopharmacological treatment significantly higher than psychologists and nurses, while nurses evaluated efficacy of all other interventions significantly higher than psychiatrists and psychologists. CONCLUSIONS: Experts evaluated a variety of clinical interventions as effective in palliating existential suffering, although the perceived levels of efficacy of each intervention differed according to the nature of suffering and their specialties. To effectively alleviate existential suffering in terminally ill cancer patients, an integrated care by an interdisciplinary team is necessary.

Analysis of Variance↗
PubMed2006

Towards the development of ethical practices in paediatric clinical trials: the special position of the terminally ill child.

This article examines the emotive and vexing issue of the involvement of terminally children in paediatric clinical trials. Particular emphasis is placed on the participation of such children in Phase I clinical studies, as such studies do not yield any benefit to the individual child. It provides an historical overview of medical research involving children and examines the moral arguments surrounding the participation of children in clinical trials. The article examines the conflict between doctor-as-researcher and doctor-as-treater as well as the problems presented by proxy consent providers. The role played by the human research ethics committee in this area is examined, as is the regulatory framework established by the National Health and Medical Research Council. The article argues that the participation of terminally ill children in Phase I clinical trials is not morally repugnant provided that there is a total commitment to the protection of the child participant's well-being during the dying process. It is argued that the moral justification for such position derives from the utilitarian notion that participation in such studies aims to benefit future generations of ill children.

Australia↗
PubMed1982

Implications of ethnicity in the care of the terminally ill.

A holistic approach to the care of the terminally ill must include considerations of ethnic variables and cultural traditions influencing views of death. The implications of ethnicity for health care delivery, direct patient care, and interpretation of patient and family responses are discussed.

Attitude to Death↗
PubMed1996

Use of red blood cell transfusions in terminally ill cancer patients admitted to a palliative care unit.

Anemia is often associated with neoplastic disorders. Blood transfusions are used to alleviate the discomfort of anemic cancer patients. Of 246 terminally ill cancer patients admitted to our palliative care unit from October 1991 to December 1993 (128 women and 118 men), 31 patients (12.6%) (17 men and 14 women; age, 69.5 +/- 12 years) received on average 2.8 units of packed red blood cells (PRBCs) (range, 2-7 units/patient) in 35 separate admissions. PRBCs were transfused in the presence of low hemoglobin (Hb) levels ( < or = 8 g/dL) and/or severe fatigue or dyspnea. Pre-transfusion performance status, cognitive function, dyspnea, and fatigue at rest (evaluated by a four-point scale), complete blood count, serum albumin, and C-reactive protein were determined. The day after transfusion, subjective well-being was recorded as "yes/no" improvement in comparison with the pre-transfusion day. Improved subjective well-being after blood transfusion was reported in 51.4%, without significant relationship to pre-transfusion Hb levels or performance status. The influence of blood transfusion on subjective well-being was not related to the severity of dyspnea or fatigue. Twenty-one patients (60%), including seven with subjective improvement, died during the same hospitalization, a median of 49 days after transfusion. Pre-transfusion Hb level did not differ significantly in patients who benefited and did not benefit from transfusion, whereas time before death was significantly (P < 0.001) shorter in patients who did not benefit. In the discharged patients (40%), the median interval between transfusion and discharge was 13 days and the frequency of subjective improvement in well-being was 78.6%. Our data suggest that two main areas should be investigated, namely the relation between low Hb levels and symptoms and signs in terminally ill cancer patients, and the correct timing for effective blood transfusion. A combination of criteria is needed for effective transfusion; they must include not only Hb levels but also type and severity of anemic symptoms and signs. Furthermore, the identification of reliable prognostic indicators for survival would be useful.

Aged↗
PubMed1979

The question of disclosing the diagnosis to terminally ill patients.

The question of disclosing the diagnosis to terminally ill patients was investigated by means of a semi-standardized interview of 56 subjects who had been 'told the truth' about their condition. The effects and interdependence of the factors of age, personality structure (EPI neuroticism scale), duration of knowledge, social contact, and religiousness, on the patient's ability to cope with the information were examined. The process of adjustment was assessed according to the stages proposed by Kübler-Ross (1969). Using the statistical model of path analysis, it was possible to evaluate these individual factors and present linearly their interrelationships. These results can offer medical staff the following guidelines: Three factors (a) advanced years, (b) good social contact, and (c) optimally unneurotic personality structure, provide the optimum conditions for a positive adjustment to the disclosure of a diagnosis of fatal illness. If, however, only one or two of these factors are involved, or if they are evident only to a slight degree, then conditions for telling the truth are less positive. On the other hand, in the case of (a) youth, (b) restricted social contact, and (c) a more markedly neurotic person, particular caution is recommended, since the danger of a negative reaction, and indeed even of suicide, must be reckoned with.

Adolescent↗
PubMed2003

Impaired communication capacity and agitated delirium in the final week of terminally ill cancer patients: prevalence and identification of research focus.

The maintenance of intellectual activity is an important area in the "good death" concept. To clarify the communication capacity levels of terminally ill cancer patients in their final week, and to identify factors contributing to the development of communication capacity impairment and agitated delirium, a retrospective study was performed on 284 consecutive hospice inpatients. The data were collected by chart review, and two independent raters measured the degree of communication capacity and agitation in the last week, using multiple items from the Memorial Delirium Assessment Scale, the Communication Capacity Scale, and the Agitation Distress Scale. The percentages of patients who could achieve complex communication were 43%, 28%, and 13% at 5 days, 3 days, and 1 day before death, respectively. Agitated delirium was identified in 20%. Patients receiving opioids at a dose of > or =120 mg oral morphine equivalents/day one week before death were significantly unable to communicate clearly 3 days before death (0.48 [0.28-0.84], P=0.011). Male gender and the presence of icterus were identified as significant contributors to the development of agitated delirium (odds ratios [95% C.I.]=2.6 [1.4-5.0], P<0.01; 2.4 [1.3-4.4], P< 0.01). These findings demonstrate that communication capacity impairment and agitated delirium are frequently observed in terminally ill cancer patients, and are significantly correlated with a higher dose requirement of opioids and the presence of icterus. To explore the best management to maintain the intellectual activity of dying patients, research should focus on a homogeneous sample of patients receiving high-dose opioids and those with hepatic encephalopathy. In the meanwhile, clinicians should educate patients and family members about the nature of the dying process and help facilitate the completion of life purposes requiring complex mental activities before the latest stages of cancer.

Aged↗
PubMed2006

Artificial hydration therapy, laboratory findings, and fluid balance in terminally ill patients with abdominal malignancies.

To explore the association between hydration volume and laboratory findings, and between calculated fluid balance and changes in clinical signs of dehydration and fluid retention in terminally ill cancer patients, a secondary analysis of a large multicenter, prospective, observational study was performed. The study enrolled 125 abdominal cancer patients who received laboratory examinations in the last week before death. Patients were classified into two groups: the hydration group (n = 44), who received 1L or more of artificial hydration per day both 1 and 3 weeks before death, and the nonhydration group (n = 81). The mean albumin level 1 week before death was significantly lower in the hydration group than in the nonhydration group, and the interaction between hydration group and decrease in the albumin level was statistically significant after adjusting multiple covariates (from 2.8 +/- 0.68 mg/dL 3 weeks before death to 2.4 +/- 0.56 mg/dL 24 hours before death in the hydration group vs. a decrease of 2.8 +/- 0.53 to 2.6+ /- 0.45 mg/dL in the nonhydration group, P = 0.015). There was no significant difference between the groups in the mean blood urea nitrogen/creatinine, sodium, or potassium levels 1 week before death. Among 53 patients who had oral fluid intake of less than 500 mL/day throughout the last 3 weeks and completed a fluid balance study, the median of calculated fluid balance was -400 mL/day 3 weeks before death, -521 mL/day 1 week before death, and -421 mL/day 24 hours before death. Calculated fluid balances did not significantly differ between the patients with deterioration of dehydration signs, edema, ascites, and pleural effusion during the final 3 weeks and those without. These data suggest that active artificial hydration might result in hypoalbuminemia, with no clear beneficial effects on normalizing blood urea nitrogen/creatinine, sodium, or potassium levels. Fluid balance did not significantly correlate with changes in dehydration-and fluid retention-signs. Calculated fluid balance is not an appropriate alternative to direct monitoring of patient symptoms. More studies are needed to determine the clinical efficacy of artificial hydration for terminally ill cancer patients.

Abdominal Neoplasms↗
PubMed1998

Measuring quality of life for patients with terminal illness: the Missoula-VITAS quality of life index.

Quality of life (QOL) is an important outcome measure in caring for terminally ill patients. The Missoula-VITAS Quality of Life index (MVQOLI) has been developed to provide a measure of quality of life that is meaningful to both clinicians and patients. Unique features of the instrument include its focus on the terminal phase of life, the item structure and a scoring system that allows the weighting of each dimension of QOL by the respondent, and the subjective wording of the items that allows respondents to interpret the measured elements according to their own experience. The validity and reliability of the patient-reported survey instrument were tested by administering the 25-item questionnaire to 257 patients in 10 community-based hospices. Participants were incurably ill with predicted survival of six months or less. Exclusion criteria included inability to communicate, dementia, or psychological symptoms that might be intensified by completing the index. Reliability and validity of the new index were examined using standard statistical and psychometrical analyses. The MVQOLI demonstrated internal consistency (Cronbach's alpha = 0.77). MVQOLI total scores were correlated with scores on the Multidimensional Quality of Life Scale--Cancer 2 and with patient-reported global QOL ratings. MVQOLI scores did not correlate with observer-rated functional status scores indicating divergent validity. The MVQOLI could be completed by patients of varied educational level, age, functional status, and length of time with a terminal illness. The instrument is designed to contribute to the task of planning care by evaluating patient-identified sources of distress, strength and satisfaction, including issues of life closure. This information contributes to crafting highly specific interventions. Further studies are necessary to determine the usefulness of the instrument in measuring outcomes of end-of-life care in nonhospice settings, and for racial and diagnostic groups under-represented in this sample.

Female↗
PubMed1994

The use of hypodermoclysis for rehydration in terminally ill cancer patients.

The need to treat dehydration in terminally ill patients to minimize symptom distress remains a controversial issue. Hypodermoclysis (HDC) is a simple technique for rehydration that offers many advantages over the intravenous route. In this prospective open study of 100 consecutive patients who died on a palliative care unit, we recorded our indications for, and use of, HDC. Of the 100 patients, 69 received HDC for an average of 14 +/- 18 days during an average admission of 35 +/- 41 days. The 31 patients who did not receive HDC had an average admission of 22 +/- 24 days, and appeared to have different characteristics than the HDC group. HDC was well tolerated in most patients at an average volume of 1203 +/- 505 mL/day. These results confirm that HDC for dehydration is a safe and effective technique and suggest the need for further research to clarify the role of rehydration in assisting symptom control.

Aged↗
PubMed2004

Family experience with palliative sedation therapy for terminally ill cancer patients.

Symptomatic sedation is often required in terminally ill cancer patients, and could cause significant distress to their family. The aims of this study were to clarify the family experience during palliative sedation therapy, including their satisfaction and distress levels, and the determinants of family dissatisfaction and high-level distress. A multicenter questionnaire survey assessed 280 bereaved families of cancer patients who received sedation in 7 palliative care units in Japan. A total of 185 responses were analyzed(response rate, 73%). The families reported that 69% of the patients were considerably or very distressed before sedation. Fifty-five percent of the patients expressed an explicit wish for sedation, and 89% of families were clearly informed. Overall, 78% of the families were satisfied with the treatment, whereas 25% expressed a high level of emotional distress. The independent determinants of low levels of family satisfaction were: poor symptom palliation after sedation, insufficient information-giving, concerns that sedation might shorten the patient's life, and feelings that there might be other ways to achieve symptom relief The independent determinants of high levels of family distress were: poor symptom palliation after sedation, feeling the burden of responsibility for the decision, feeling unprepared for changes in the patient's condition, feeling that the physicians and nurses were not sufficiently compassionate, and shorter interval to patient death. Palliative sedation therapy was principally performed to relieve severe suffering based on family and patient consent. Although the majority of families were comfortable with this practice, clinicians should minimize family distress by regular monitoring of patient distress and timely modification of sedation protocols, providing sufficient information, sharing the responsibility of the decision, facilitating grief and providing emotional support.

Comorbidity↗
PubMed2005

Volunteer support, marital status, and the survival times of terminally ill patients.

This study examines the possibility that volunteer support can influence how long terminally ill patients survive. Hospice patient files (N = 290) were coded for marital status and volunteer support condition, respectively, the latter on the basis of whether visits from volunteers were requested and received (n = 94), requested but not received (n = 28), or neither requested nor received (n = 168). Baseline health, disease type, and demographic dimensions were comparable across support conditions. Results indicated that when a baseline health status effect was controlled for (p<.0002), patients in the volunteer support condition survived significantly longer than did patients in either unvisited condition (p<.0001). Neither marital status nor gender independently predicted survival time.

Aged↗
PubMed1993

Domiciliary care: a comparison of the views of terminally ill patients and their family caregivers.

This study compares terminally ill patients and their family caregivers in terms of the physical and emotional status of the patients, the adequacy of the support provided for the patients and where the patients would be most appropriately placed during the last stage of their lives. Patients and caregivers shared similar views about the latter, but there was a lack of concordance between them regarding the patients' physical and emotional state. Patients generally reported a much more favourable view of their outlook and emotional state than did their caregivers. Caregivers may need help to review their assumptions about the patients' emotional welfare, and caution should be used in accepting caregivers' views about how patients are coping emotionally.

Adult↗