Advanced cancer patients are at an increased risk of developing depressive symptoms, which can lead to major depressive disorder and a poor quality of life. It is important that symptoms of depression to be addressed early and frequently throughout the trajectory of the disease process. Depression is underdiagnosed and therefore undertreated in advanced cancer patients. Clinicians often fail to perform regular depression screenings as recommended by the National Comprehensive Cancer Network. Depressive symptoms are overlooked as they tend to overlap with the effects of disease progression and cancer treatments. Patients' complaints of anorexia, chronic pain, and sleep disturbances do not necessarily trigger practitioners to perform depression screenings. African Americans with advanced cancer are at a higher risk of developing depression, but may not identify as depressed due to the stigma of mental health in the black community. Screening tools such as the 2- and 9-item Patient Health Questionnaire, Beck Depression Inventory II, Hospital Anxiety and Depression Scale, and the Distress Thermometer and Problem List are common brief instruments that can screen for depression. Providing early symptom relief of depressive symptoms through psychotherapy and pharmacologic interventions will benefit the patient, family, and caregivers while improving the quality of life throughout the trajectory of the illness.
Introduction: End-of-life care (EOLC) is an increasingly important concern in the management of terminally ill patients. Effective EOLC depends significantly on the physicians working in the critical care units. Thus, adequate knowledge of critical care professionals regarding EOLC is important. We conducted this study to evaluate the awareness and knowledge of doctors working in critical care units toward EOLC.
Materials and methods: Doctors working in critical care units were invited to fill paper-based questionnaire. The validated questionnaire was constructed based on the existing literature on EOLC and expert opinion. The questionnaire comprised four sections: demographic details, experience with EOLC situations, general awareness of EOLC, and specific awareness of EOLC in clinical practice. The collected data were analyzed by descriptive analysis.
Results: Most respondents had not counseled more than five families regarding EOLC over 1 month. Majority of the respondents (81.7%) had heard of EOLC; the major source of information being their work in the concerned specialty. Only 29.2% of the respondents applied EOLC principles in their clinical practice. Main barriers were lack of information and training. Only 20.3% of the respondents were aware of Indian guidelines about EOLC. Majority of the respondents disagree regarding the usage of critical care units and resuscitation of terminally ill patients and were in favor of home care. One-third respondents felt uncomfortable in discussing EOLC issues with the families. Half of the respondents felt that they were only somewhat competent in managing EOLC issues. Most respondents opined that training and education in medical curriculum for terminally ill patients are lacking and were in strong favor of inclusion of specific training for the same.
Conclusion: The EOLC needs to be an integral part of critical care management and teaching curriculum. An integral referral system may also be an option for various advance disease patients getting treatment from critical care specialists for EOLC decision.
Objectives: Decision-making on artificial nutrition and hydration for patients terminally ill with cancer can be influenced by nurses' knowledge, attitudes, and behavioral intentions. A comprehensive 57-item questionnaire including six sections on the knowledge, attitudes, and behavioral intentions in providing artificial nutrition and hydration to patients terminally ill with cancer has been developed and used in Taiwan. However, the questionnaire needs further psychometric testing and adaptation for other cultures. This study aimed to cross-culturally adapt the questionnaire within the Italian cultural context and test its psychometric properties.
Methods: The questionnaire was translated into Italian and cross-culturally adapted per the recommendations by Beaton. A panel of 10 experts assessed content validity. A multicenter cross-sectional study was conducted with 411 nurses to test its psychometric properties. Dimensionality and construct validity were assessed through exploratory and confirmatory factor analyses. Reliability was estimated by composite and traditional methods, such as the Kuder Richardson formula-20 and Cronbach's a coefficients.
Results: The overall content validity index was 0.85. A confirmatory factor analysis was conducted for the knowledge section and the four attitudes sections. A preliminary analysis for the behavioral intentions section yielded non acceptable results. The internal consistency of the scales was adequate (range, 0.64-0.93).
Conclusions: This study constituted a notable advancement in the psychometric testing of the tool, and provides evidence that the Italian version of the questionnaire has acceptable psychometric characteristics for the sections on knowledge and attitudes.
Background: To identify the necessary care for dying patients in intensive care units (ICUs), we designed a retrospective study to evaluate the quality of dying and death (QODD) experienced by the surrogates of patients with medical illness who died in the ICU of a tertiary referral hospital.
Methods: To achieve our objective, the authors compared the QODD scores as appraised by the relatives of patients who died of cancer under hospice care with those who died in the ICU. For this study, a Korean version of the QODD questionnaire was developed, and individual interviews were also conducted.
Results: Sixteen people from the intensive care group and 23 people from the hospice care group participated in the survey and completed the questionnaire. The family members of patients who died in the ICU declined participation at a high rate (50%), with the primary reason being to avoid bringing back painful memories (14 people, 87.5%). The relatives of the intensive care group obtained an average total score on the 17-item QODD questionnaire, which was significantly lower than that of the relatives of the hospice group (48.7±15.5 vs. 60.3±14.8, P=0.03).
Conclusions: This work implies that there are unmet needs for the care of dying patients and for the QODD in tertiary hospital ICUs. This result suggests that shared decision making for advance care planning should be encouraged and that education on caring for dying patients should be provided to healthcare professionals to improve the QODD in Korean ICUs.
BACKGROUND AND AIM: Healthcare professionals working in palliative care are exposed to emotionally intense conditions. Scientific literature suggests Expressive Writing as a valid tool for the adjustment to traumatic events. For health workers, EW represents an important support to prevent Compassion Fatigue and Burnout. As literature showed that Compassion Satisfaction, Group Cohesion and the Organizational Commitment are protective factors able to counter the onset of Compassion Fatigue and Burnout, the aim of this study is evaluating the effect of Expressive Writing protocol in Palliative Care workers on Compassion Satisfaction, Group Cohesion and Organizational Commitment.
METHODS: A quasi-experimental quantitative 2x2 prospective study was conducted with two groups and two measurements. 66 professionals were included. Outcome variables were measured using: Organizational Commitment Questionnaire, Compassion Satisfaction Rating Scale, ICONAS Questionnaire, Questionnaire for the evaluation of EW sessions.
RESULTS: The parametric analysis through Student t test did not show statistical significance within the experimental group and between the experimental and control groups. One significant difference in the pre-intervention assessment of Normative Commitment t (gl 64) = -2.008 for p< 0.05, higher in the control group, disappeared in the post intervention evaluation. An improvement trend in all variables within and between groups was present, with a positive assessment of utility from the participants.
CONCLUSIONS: This intervention did not significantly impact outcome variables. It is however conceivable that by modifying the intervention methodology, it could prove effective. The positive evaluation by the operators, suggests to keep trying modelling a protocol tailored on Palliative Care professionals.
The study objective was to develop and test a new survey instrument that measures caregiver-centered communication. We developed a questionnaire inspired by the National Cancer Institute framework on patient-centered communication, focusing on family caregiver communication for this tool. The questionnaire includes 5 subscales: exchange of information, relationship with team, emotions, managing care, and decision-making. The initial questionnaire was reviewed by domain experts for face validity and edited further to include 30 items. We administered the modified questionnaire to 115 family caregivers of patients with serious illness in various settings. Cronbach a for the entire scale was 0.97 and ranged from 0.82 to 0.93 for the 5 subscales. Participants found that the survey addressed important concepts and that items were in most cases easy to understand. This instrument provides a structured way to assess caregiver-centered communication, addressing a pressing need for tools that measure the extent to which communication is responsive to the needs and preferences of family caregivers. Further testing and refinement are needed to improve the ease of use and examine the reliability and validity of this measure.
BACKGROUND: Rapid frailty screening remains problematic in primary care. The diagnostic test accuracy (DTA) of several screening instruments has not been sufficiently established. We evaluated the DTA of several screening instruments against two reference standards: Fried's Frailty Phenotype [FP] and the Adelaide Frailty Index [AFI]), a self-reported questionnaire.
METHODS: DTA study within three general practices in South Australia. We randomly recruited 243 general practice patients aged 75+ years. Eligible participants were 75+ years, proficient in English and community-dwelling. We excluded those who were receiving palliative care, hospitalised or living in a residential care facility.We calculated sensitivity, specificity, predictive values, likelihood ratios, Youden Index and AUC for: Edmonton Frail Scale [EFS], FRAIL Scale Questionnaire [FQ], Gait Speed Test [GST], Groningen Frailty Indicator [GFI], Kihon Checklist [KC], Polypharmacy [POLY], PRISMA-7 [P7], Reported Edmonton Frail Scale [REFS], Self-Rated Health [SRH] and Timed Up and Go [TUG]) against FP [3+ criteria] and AFI [> 0.21].
RESULTS: We obtained valid data for 228 participants, with missing scores for index tests multiply imputed. Frailty prevalence was 17.5% frail, 56.6% pre-frail [FP], and 48.7% frail, 29.0% pre-frail [AFI]. Of the index tests KC (Se: 85.0% [70.2 - 94.3]; Sp: 73.4% [66.5 - 79.6]) and REFS (Se: 87.5% [73.2 - 95.8]; Sp: 75.5% [68.8 - 81.5]), both against FP, showed sufficient diagnostic accuracy according to our pre-specified criteria.
CONCLUSIONS: Two screening instruments - the KC and REFS, show the most promise for wider implementation within general practice, enabling a personalised approach to care for older people with frailty.
This study aimed to describe Australian long-term care (LTC) personnel’s knowledge and attitudes concerning palliative care for residents with advanced dementia, and explore relationships with LTC facility/personnel characteristics. An analysis was undertaken of baseline data from a cluster randomised controlled trial of facilitated family case conferencing for improving palliative care of LTC residents with advanced dementia (the ‘IDEAL Study’). Participants included any LTC personnel directly involved in residents’ care. Knowledge and attitudes concerning palliative care for people with advanced dementia were measured using the questionnaire on Palliative Care for Advanced Dementia. Univariate and multivariate analyses explored relationships between personnel knowledge/attitudes and facility/personnel characteristics. Of 307 personnel in the IDEAL Study, 290 (94.5%) from 19/20 LTCFs provided sufficient data for inclusion. Participants included 9 (2.8%) nurse managers, 59 (20.5%) registered nurses, 25 (8.7%) enrolled nurses, 187 (64.9%) assistants in nursing/personal care assistants and 9 (3.1%) care service employees. In multivariate analyses, a facility policy not to rotate personnel through dementia units was the only variable associated with more favourable overall personnel knowledge and attitudes. Other variables associated with favourable knowledge were a designation of nursing manager or registered or enrolled nurse, and having a preferred language of English. Other variables associated with favourable attitudes were tertiary level of education and greater experience in dementia care. Like previous international research, this study found Australian LTC personnel knowledge and attitudes regarding palliative care for people with advanced dementia to be associated with both facility and personnel characteristics. Future longitudinal research is needed to better understand the relationships between knowledge and attitudes, as well as between these attributes and quality of care.
This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.
Background: Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) – Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL – Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance.
Methods: Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics.
Results: Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033).
Conclusions: MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).
Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals.
Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate).
Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support.
Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative’s priorities for EoLC in acute hospitals and can advance care providers’, policy makers’ and educationalists’ priorities for service improvement.
CONTEXT: The validated 82-item Advance Care Planning (ACP) Engagement Survey measures a broad range of ACP behaviors but is long.
OBJECTIVES: Determine whether shorter Survey versions (55-, 34-, 15-, 9-, 4-items) can detect similar change in response to two well-validated ACP interventions and provide practical effect size information.
METHODS: We assessed ACP engagement for 986 English- and Spanish-speaking adults in a randomized trial of PREPARE versus an advance directive (AD-only) study arms. The Survey was administered at baseline, 1 week, and 3, 6, 12 months. We calculated mean change scores from baseline to follow-up time points by study arm, intraclass correlation coefficients of change scores between the 82-item Survey with shorter versions, and within- and between-group effect sizes of the mean change scores.
RESULTS: Shorter Survey versions were able to detect within- and between-group changes at all time points. Within-group intraclass correlations of the 82-item to shorter versions were high (0.78 to 0.97) and the amount of between-group differences were comparable using all Survey versions. Twelve-month within-group effect sizes ranged narrowly from 0.76 to 1.05 for different Survey versions in the PREPARE arm and from 0.44 to 0.64 for the AD-only. Between-group effect sizes ranged narrowly from 0.24 to 0.30 for different Survey versions. Results were similar when stratified by English- and Spanish-speakers.
CONCLUSION: Shorter versions of the ACP Engagement Survey were able to detect within- and between-group changes comparable to the 82-item version and can be useful for efficiently and effectively measuring ACP engagement in research and clinical settings.
The goal of this study was to explore quality of life in patients with advanced non-small-cell lung cancer (NSCLC) in an attempt to single out features that could help predict the possibility of non-completion of chemotherapy. The survey tool was the Quality of Life Questionnaire Core-30 (QLQ-C30) with the module Lung Cancer 13 (LC-13) developed by the European Organization for Research and Treatment of Cancer. The assessment of quality of life (QoL) was performed in 58 patients with advanced NSCLC before palliative chemotherapy and it was repeated in 43 patients who completed at least three cycles of chemotherapy. We found that the patients who failed to complete the chemotherapy course distinctly showed, in contradistinction to those who completed it, poor physical functioning in (67.6 ± 16.3 vs. 78.3 ± 21.3 points, respectively, p < 0.05) and the lack of appetite (27.1 ± 38.0 vs. 48.9 ± 37.5 points, respectively p < 0.05). At the end of palliative chemotherapy alopecia, sore throat, and constipation significantly worsened QoL, but global health status remained unchanged. In conclusion, poor physical functioning and loss of appetite seem to harbinger a risk of non-completion of chemotherapy in advanced NSCLC.
OBJECTIVE: This is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme-Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).
METHODS: In this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale-revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory-12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.
RESULTS: The majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.
INTERPRETATION: Some patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.
BACKGROUND: To determine the validity, reliability and acceptability of the Mandarin Chinese version of the Problems and Needs in Palliative Care questionnaire-short version (PNPC-sv) for measuring problems and palliative care needs among patients with advanced cancer.
METHODS: This was a validation study using a forward- and backward- translation procedure, a panel of experts and a cross-sectional study design. The Mandarin Chinese version of the PNPC-sv was translated by four independent translators. The translated Chinese version was further reviewed by an expert panel to identify its content validity. A pilot test was conducted in 10 advanced cancer patients to preliminarily assess the face validity, readability and clarity of the pre-final version of the PNPC-sv. 178 patients with advanced cancer, regardless of their gender and types of cancer diagnosis, were further recruited through a convenience sampling from three tertiary hospitals in China to assess the psychometric properties of the PNPC-sv Mandarin Chinese version. Content validity was measured using the content validity index (CVI). Construct validity was estimated via confirmatory factor analysis and the contrasted groups approach. Concurrent validity was identified by analysing the correlations between the EORTC Quality-of-Life Questionnaire-Core 30 (EORTC QLQ-C30) and the PNPC-sv. Reliability of the PNPC-sv was examined with the internal consistency reliability and item-to-total correlations. Several closed-ended and open-ended questions were designed to explore its acceptability.
RESULTS: 174 patients completed the questionnaires. High content and face validity were determined after the two rounds of assessment with the expert panel and the patients. An excellent CVI of 1.0 was achieved and patients rated the PNPC-sv as a useful instrument for assessing their problems and needs (mean score = 7.99, 0–10 scale) and reported the items were not particularly sensitive and easy to understand. The majority of the fit indexes meet the critical criteria, with the Chi-square divided by degrees of freedom (x2/df) being 1.58 and 2.05, and the root mean squared error of approximation (RMSEA) being 0.06 and 0.07 for the problem part and need-for-care part, respectively. In relation to the contrasted groups analysis, it clearly discriminated the differences on the sub-scores of Activities of Daily Life (ADL), spiritual and psychological problems and needs between male and female patients; ADL, physical, social and financial problems and needs between age groups; and autonomic problems and needs between patients with different cancer stages. Statistically significant correlations (p < 0.05) were detected between the PNPC-sv and the EORTC QLQ-C30 in the majority of the sub-scores (positive correlations) and total scores (negative correlations). The Cronbach’s alpha of the total scale was 0.88 and 0.91 for the problem part and need-for-care part, respectively. The Cronbach’s alpha of the subscales were generally above 0.70. Item-to-total correlations were generally acceptable, with the majority of the values being above 0.40. The PNPC-sv questionnaire was reported to be convenient and easy to understand, and the average time for completing was 11 min.
CONCLUSIONS: The Mandarin Chinese version of the PNPC-sv is a valid, reliable and user-friendly instrument for measuring problems and palliative care needs among patients with advanced cancer. Further research is needed to further examine its psychometric properties particular internal structure in a larger patient sample.
BACKGROUND: Some people experience exceptionally severe bereavement grief, and this level of post-death grief could potentially be the result of a low quality dying process.
AIMS: A pilot study was conducted to determine if a relationship exists between perceived death quality and bereavement grief intensity.
METHODS: A questionnaire was developed and posted online for data on bereavement grief intensity, perceived death quality, and decedent and bereaved person characteristics. Data from 151 Canadian volunteers were analysed using bi-variate and multiple linear regression tests.
FINDINGS: Half had high levels of grief, and over half rated the death as more bad than good. Perceived death quality and post-death grief intensity were close to being negatively correlated.
CONCLUSION: These findings indicate research is needed to explore possible connections between bereavement grief and the survivor's perceptions of whether a good or bad death took place. In the meantime, it is important for palliative care nurses to think of the quality of the dying process as being potentially very impactful on the people who will be left to grieve that death.
BACKGROUND: The goals of palliative care are to relieve suffering and promote quality of life. Palliative care for older persons has been less prioritised than palliative care for younger people with cancer, which may lead to unnecessary suffering and decreased quality of life at the final stage of life.
AIM: To evaluate whether a palliative care intervention had any influence on the perceived quality of life of older persons (=65 years).
METHODS: This study was conducted as a complex intervention performed with an experimental crossover design. The intervention was implemented in 20 nursing homes, with a six-month intervention period in each nursing home. Twenty-three older persons (=65 years) in the intervention group and 29 in the control group were interviewed using the WHOQOL-BREF and WHOQOL-OLD questionnaires at both baseline and follow-up. The collected data were analysed using the Wilcoxon signed-rank test to compare paired data between baseline and follow-up.
RESULTS: In the intervention group, no statistically significant increases in quality of life were found. This result contrasted with the control group, which revealed statistically significant declines in quality of life at both the dimension and item levels. Accordingly, this study showed a trend of decreased health after nine months in both the intervention and control groups.
CONCLUSION: It is reasonable to believe that quality of life decreases with age as part of the natural course of the ageing process. However, it seems that the palliative care approach of the intervention prevented unnecessary quality of life decline by supporting sensory abilities, autonomy and social participation among older persons in nursing homes. From the ageing perspective, it may not be realistic to strive for an increased quality of life in older people living in nursing homes; maybe the goal should be to delay or prevent reduced quality of life. Based on this perspective, the intervention prevented decline in quality of life in nursing home residents.
IMPLICATIONS FOR PRACTICE: The high number of deaths shows the importance to identify palliative care needs in older persons at an early stage to prevent or delay deterioration of quality of life.
Période de vulnérabilité, la fin de vie est marquée par une appétence relationnelle des malades, qui concerne l’entourage, les soignants mais aussi éventuellement un animal, celui du malade ou inscrit dans un projet de service de médiation animale. Un tel projet a été mis en place au sein de l’unité de soins palliatifs, dont l’un des volets est relatif à la présence d’un chat résident permanent de l’unité. L’impact de sa présence a été étudié par un questionnaire de satisfaction auprès des patients et des familles. Trente-six questionnaires sur une période de trois mois ont été étudiés. Les résultats montrent que la chatte a fréquenté presque toutes les chambres et circulé dans les parties communes. Patients et entourage ont des eu interactions avec elle, sous forme de caresses. Elle a apporté distraction, détente et réconfort pour plus de la moitié des personnes interrogées, et dans une moindre mesure diminution de l’anxiété. La satisfaction globale a été majeure : 84,4 % des personnes ont estimé la présence de la chatte très satisfaisante et 15,6 % satisfaisante. Les limites étaient notamment la faiblesse de l’échantillon et la brièveté de la période d’étude. D’autres items auraient pu être étudiés : impact sur l’humeur, la fatigue, l’appétit, la perception de l’état de santé. L’impact sur les soignants serait une autre piste de réflexion.
PURPOSE: The purpose of this study was to explore the perceptions of critical care nurses regarding the withdrawal or withholding of enteral nutrition (EN) and parenteral nutrition (PN) at the end-of-life, which is not allowed according to the current law in South Korea.
METHODS: This was a cross-sectional study utilizing a self-report survey. The participants in the study were 141 nurses working in the intensive care units of a tertiary university hospital. The critical care nurses' general attitudes about EN and PN at the end-of-life were measured using the questionnaires developed by Lubart, Leibovitz, and Habot. The nurses responded to additional questions on whether withdrawal or withholding of EN or PN at the end-of-life should be legally allowed.
RESULTS: The mean scores of the general attitude items on EN ranged between 3.03 and 3.35 on a 5-point Likert scale where a value of 1 represents "strongly disagree" and a value of 5 represents "strongly agree," while those for PN ranged between 2.89 and 3.65. Respecting attitudes toward EN and PN, critical care nurses had more negative attitudes about stopping PN than EN. Regarding attitudes about whether patients should be legally able to refuse EN, 34.3% agreed, while 25.7% disagreed. For PN, 40.0% agreed, while 24.3% disagreed.
CONCLUSION: Discussions about making the withdrawal and withholding of artificial nutrition legal should be initiated. Moreover, education regarding evidence about the outcomes of EN and PN during end-of-life care and up-to-date clinical guidelines about it should be provided.
PURPOSE: Patients in palliative care are willing to answer short questionnaires, like the EORTC QLQ-C15-PAL; however, patients may suffer from other symptoms and problems (S/Ps) not covered by such questionnaires. Therefore, to identify which other S/Ps patients experience, in addition to those already included in the EORTC QLQ-C15-PAL, we developed a brief instrument to supplement this questionnaire named WISP (Write In three Symptoms/Problems), permitting patients to report 1-3 additional S/Ps and their severity. We aim to investigate the nature, prevalence, and severity of S/Ps reported on WISP.
METHODS: A register-based study with data obtained from the Danish Palliative Care Database. This study included adults with advanced cancer admitted to specialized palliative care in Denmark, who reported S/Ps on WISP. S/Ps were categorized qualitatively, and their prevalence and severity were calculated.
RESULTS: Of the 5447 patients who completed the EORTC QLQ-C15-PAL, 1788 (32.8%) reported at least one symptom/problem using WISP. In total, 2796 S/Ps were reported; 24.8% were already covered by EORTC QLQ-C15-PAL; 63.6% were new, 10.1% were diagnoses and 1.6% could not be coded. S/Ps already covered and new were grouped into 61 categories. The most prevalent S/Ps reported were (in decreasing order) pain, edema, dizziness, impaired physical or emotional function, cough, and sweats. Overall, 85% of the S/Ps were rated as moderate to severe.
CONCLUSIONS: The WISP instrument strongly improves the recognition of S/Ps by combining standardization with individualization. We recommend its use for comprehensive symptom assessment alongside the EORTC QLQ-C15-PAL, and potentially also alongside the EORTC QLQ-C30.