OBJECTIVE: The identification of modifiable cognitive antecedents of trajectories of grief is of clinical and theoretical interest.
METHOD: The study gathered 3-wave data on 275 bereaved adults in the first 12-18 months postloss (T1 = 0-6 months, T2 = 6-12 months, T3 = 12-18 months). Participants completed measures of grief severity, cognitive factors (loss-related memory characteristics, negative appraisals, unhelpful coping strategies, and grief resilience), as well as measures of interpersonal individual differences (attachment and dependency). Latent growth mixture modeling was used to identify classes of grief trajectories. Predictors of class membership were identified using multinomial logistic regression and multigroup structural equation modeling.
RESULTS: Four latent classes were identified: 3 high grief classes (Stable, Low Adaptation, and High Adaptation) and a low grief class (Low Grief). When considered separately, variance in all four cognitive factors predicted membership of the high grief classes. When considered together, membership of the high grief classes was predicted by higher mean scores on memory characteristics. More negative appraisals predicted low or no adaptation from high grief severity. Losing a child also predicted membership to the stable class. Fast adaptation of high grief was predicted by a pattern of high memory characteristics but low engagement with unhelpful coping strategies.
CONCLUSIONS: The findings have implications for clinical practice and point to early cognitive predictors of adaptation patterns in grief. Findings are consistent with cognitive models highlighting the importance of characteristics of memory, negative appraisals, and unhelpful coping strategies in the adaptation to highly negative life events.
This study was conducted to evaluate the efficiency of a nursing support program developed in accordance with the Roy adaptation model that was applied in addition to routine nursing care during the treatment process of pregnant women for whom the medical termination decision. This study, which was conducted using a pretest–posttest design, was a prospective, single-blind, and randomized-controlled empirical study. In the experimental group, although the first and last assessment State Anxiety Inventory scores were higher than those in the control group after the medical termination nursing support program, there was no significant difference. Compared with the control group, there were positive differences in the Scale of Ways of Coping with Stress, Adaptation Assessment Form for Role Function Area, and physical complaints in the experimental group. At the follow-up assessment, the total Perinatal Grief Scale score was significantly higher than that in the control group.
Background: The use of quality-adjusted life years rests on the assertion that the objective of the health care system is to improve health.
Aim: To elicit the views of expert stakeholders on the purpose and evaluation of supportive end of life care, and explore how different purposes of end of life care imply the need for different evaluative frameworks.
Design:Semi-structured qualitative interviews, analysed through an economic lens using a constant comparative approach.
Participants: Twenty professionals working in or visiting the United Kingdom or Republic of Ireland, with clinical experience and/or working as academics in health-related disciplines.
Results: Four purposes of end of life care were identified from and are critiqued with the aid of the qualitative data: to improve health, to enable patients to die in their preferred place, to enable the patient to experience a good death, and to enable the patient to experience a good death, and those who are close to the patient to have an experience which is as free as possible from fear, stress and distress.
Conclusion: Managing symptoms and reducing anxiety were considered to be core objectives of end of life care and fit with the wider health service objective of improving/maximising health. A single objective across the entire health system ensures consistency in the way that resource allocation is informed across that entire system. However, the purpose of care at the end of life is more complex, encompassing diverse and patient-centred objectives which we have interpreted as enabling the patient to experience a good death.
The death of a loved one is ultimately a universal experience. However, conventional interventions employed for people suffering with uncomplicated grief have gathered little empirical support. The present study aimed to explore the potential effects of ayahuasca on grief. We compared 30 people who had taken ayahuasca with 30 people who had attended peer-support groups, measuring level of grief and experiential avoidance. We also examined themes in participant responses to an open-ended question regarding their experiences with ayahuasca. The ayahuasca group presented a lower level of grief in the Present Feelings Scale of Texas Revised Inventory of Grief, showing benefits in some psychological and interpersonal dimensions. Qualitative responses described experiences of emotional release, biographical memories, and experiences of contact with the deceased. Additionally, some benefits were identified regarding the ayahuasca experiences. These results provide preliminary data about the potential of ayahuasca as a therapeutic tool in treatments for grief.
OBJECTIVES: Assessing whether interventions are implemented as intended (fidelity) is critical to establishing efficacy in clinical research yet rarely applied in advance care planning (ACP) interventions. We aimed to develop and implement a fidelity audit tool for an ACP intervention.
METHODS: We developed a fidelity audit tool assessing: (A) content; (B) quality (general communication, eliciting EOL preferences and prognostic communication); and (C) family/caregiver involvement. We audited (double-coded) 55 audio-recordings of ACP discussions delivered to advanced cancer patients and caregivers, within a clinical trial.
RESULTS: Fidelity to content was high: mean=9.38/11 but lower for the quality of general communication (mean=12.47/20), discussion of patient preferences (mean=4.67/7), prognosis (mean=3.9/6) and family/caregiver involvement (mean=2.67/4). Older patient age and caregiver religiosity were associated with higher fidelity. Higher fidelity to content was associated with the trial primary outcome of family caregiver report of patient wishes being discussed and met.
CONCLUSIONS: Fidelity to content, but not quality, of the ACP intervention is strong. Communication skills training is critical for ACP interventionists. Adherence was higher with older patients and religious carers, factors that may influence acceptance of death and readiness to undertake ACP, making the discussion easier.
OBJECTIVE: Despite the clinical, ethical, and legal magnitude of end-of-life decision-making, the capacity of terminally ill patients to make the medical decisions they often face is largely unknown. In practice, clinicians are responsible for determining when their patients are no longer competent to make treatment decisions, yet the accuracy of these assessments is unclear. The purpose of this study was to explore decision-making capacity and its assessment in terminally ill cancer patients.
METHODS: Fifty-five patients with advanced cancer receiving inpatient palliative care and 50 healthy adults were administered the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) to evaluate decision-making capacity with regard to the four most commonly used legal standards: Choice, Understanding, Appreciation, and Reasoning. Participants made a hypothetical treatment decision about whether to accept artificial nutrition and hydration for treatment of cachexia. Participants' physicians independently rated their decision-making capacity.
RESULTS: Terminally ill participants were significantly more impaired than healthy adults on all MacCAT-T subscales. Most terminally ill participants were able to express a treatment choice (85.7%), but impairment was common on the Understanding (44.2%), Appreciation (49.0%), and Reasoning (85.4%) subscales. Agreement between physician-rated capacity and performance on the MacCAT-T subscales was poor.
CONCLUSIONS: The use of the MacCAT-T revealed high rates of decisional impairment in terminally ill participants. Participants' physicians infrequently detected impairment identified by the MacCAT-T. The findings from the present study reinforce the need for engagement in advance care planning for patients with advanced cancer.
Primary palliative care education should be provided within prelicensure programs to maximize nurses’ preparation to care for patients with serious, life-limiting illness before entering professional practice settings. Curricula need to be assessed to identify current content integration across nursing programs. The specific aim of this feasibility study was to evaluate the effectiveness of a survey methodology to assess primary palliative care content integration within prelicensure nursing curricula in multiple programs. A secondary aim was to compare content integration across nursing programs. Faculty teaching in prelicensure courses at 3 accredited nursing programs were recruited to complete a 50-item curriculum assessment survey based on the End-of-Life Nursing Education Consortium Undergraduate Curriculum. Response rates were 73%, 26.7%, and 18.8%, respectively. All content areas were reported as being taught by at least 1 faculty member per institution. Lecture was the primary pedagogy to teach all End-of-Life Nursing Education Consortium Undergraduate content areas, followed by clinical conference/debriefing and simulation. Content was primarily taught in Critical Care, Maternity, Adult Health, Gerontology, and Fundamentals courses. The disparate response rates suggest that survey dissemination may prove ineffective for multisite curricula evaluation. Implications for nursing education and clinical practice will be discussed.
PURPOSE: The main goal of palliative radiotherapy is to reduce patient's discomfort. But sometimes patients do not receive any benefits from this treatment because of rapid worsening of their general condition. This prospective monocentric study assessed the effective delivery of palliative radiotherapy.
MATERIALS AND METHODS: From 1st December 2015 to 29th February 2016, all consecutive patients receiving palliative radiotherapy in our hospital were included. The primary endpoint was the effective delivery of palliative radiotherapy according to the initial prescription (total dose, overall treatment time and fractionation). The secondary endpoints were the number of treatment breaks, the clinical benefit, the number of deaths and the delays for admission in the palliative care unit.
RESULTS: Fifty-nine patients were included and 64 treatments were analysed. The treatment sites were: bone (70.3%) and brain (21.9%). The treatment goals were: pain control only (43.8%), decompression only (21.9%), pain control and decompression (32.8%), haemostatic aim (1.6%). Palliative treatment was achieved in 57 cases (89%). Temporary interruption of the radiotherapy treatment was necessary in six cases (9.4%; three for medical reason, three for logistic reason). The main reason of permanent interruption was worsening of performance status (seven cases). Palliation of symptoms (complete or partial responses) was obtained in 44 cases (68.8%). Seven patients (11.9%) died during the month after the end of the treatment. No delay or cancellation for admission in the palliative care unit were observed.
CONCLUSION: Palliative radiotherapy was completed as originally planned in 51 cases (79.9%) with a clinical benefit for 44 cases (68.8%). Radiation therapy must not be neglected as a palliative treatment at the end-of-life.
OBJECTIVES: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.
METHODS: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.
RESULTS: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45 0.70 and 0.55 0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37 0.61).
SIGNIFICANCE OF RESULTS: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.
Introduction: Nasopharyngeal carcinoma is a rare malignancy. We conducted an audit of systemic therapies received in palliative setting in carcinoma nasopharynx and studied their outcomes.
Methods: Patients who underwent first-line palliative systemic chemotherapy between January 2014 and April 2017 for carcinoma nasopharynx at the department of medical oncology at authors' institute were selected for this analysis. Toxicities, responses, progression-free survival (PFS), and overall survival (OS) were analyzed. In addition, a Quality-Adjusted Time without Symptoms or Toxicity analysis with threshold utility analysis was performed.
Results: Fifty-one patients were included in this analysis. The indication of palliative chemotherapy was locoregionally recurrent disease in 25 (49.0%) patients and metastatic disease in 26 (51.0%) patients. The overall response rate was 62.0% (n = 33). The median PFS was 225 days (95% confidence interval [CI]: 164-274 days) and median OS was 513 days (95% CI: 286-931 days). The restricted mean TOX state duration was 2.6 days (95% CI: 0.3-4.9), restricted mean TWiST duration was 219.2 days (95% CI: 184.0-254.4), and restricted mean REL duration was 74.3 days (95% CI: 38.1-110.4).
Conclusion: Systemic cytotoxic therapy in nasopharyngeal cancers is associated with high response rates and clinically meaningful PFS; with low duration of time spent in adverse events.
CONTEXT: Patients with cancer experience many symptoms that disrupt quality of life, and symptom communication and management can be challenging. The Edmonton Symptom Assessment System (ESAS) was developed to standardize assessment and documentation of symptoms, yet research is needed to understand patients' and caregivers' experiences using the tool and its ability to impact patient-provider aligned care.
OBJECTIVES: To understand how the ESAS shapes communication between patients and providers by exploring patients' and caregivers' experiences using the ESAS and assessing the level of agreement in symptom assessment between patients and palliative care physicians.
METHODS: This study utilized a mixed-methods design. 31 semi-structured interviews were conducted and audio-recorded with patients (n = 18) and caregivers (n = 13). Data were analyzed following a social constructionist grounded theory approach. Patient and provider ESAS scores were obtained by medical chart review. Intraclass Correlation Coefficients (ICCs) were used to assess the level of agreement between patient-completed ESAS scores and provider-completed ESAS scores.
RESULTS: Participants reported that the ESAS was a beneficial tool in establishing priorities for symptom control and guiding the appointment with the palliative care physician, despite challenges in completing the ESAS. Filling out the ESAS can also help patients more clearly identify their priorities before meeting with their physician. There was a good to excellent level of agreement between patients and physicians in all symptoms analyzed.
CONCLUSION: The ESAS is beneficial in enhancing symptom communication when used as a guide to identify and understand patients' main concerns.
AIM: This study aimed to develop a "family caregiver needs-assessment scale for end-of-life care for senility at home" (FADE) and examine its reliability and validity.
METHOD: A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants' basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach's alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity.
RESULTS: In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: "Needs for adaptation to senility bereavement" and "Needs for essential skills in supporting a dignified death by senility." The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker-Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach's alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259-0.427 (p<0.001).
CONCLUSIONS: The FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce caregivers' anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace.
BACKGROUND: In several studies, investigators have successfully used an internet-enabled PAINReportIt tablet to allow patients to report their pain to clinicians in real-time, but it is unknown how acceptable this technology is to patients and caregivers when used in their homes.
OBJECTIVE: The aims of this study were to examine computer use acceptability scores of patients with end-stage cancer in hospice and their caregivers and to compare the scores for differences by age, gender, race, and computer use experience.
INTERVENTION/METHODS: Immediately after using the tablet, 234 hospice patients and 231 caregivers independently completed the Computer Acceptability Scale (maximum scores of 14 for patients and 9 for caregivers).
RESULTS: The mean (SD) Computer Acceptability score was 12.2 (1.9) for patients and 8.5 (0.9) for caregivers. Computer Acceptability scores were significantly associated with age and with previous computer use for both patients and caregivers.
CONCLUSIONS: This technology was highly acceptable to patients and caregivers for reporting pain in real time to their hospice nurses.
IMPLICATIONS FOR PRACTICE: Findings provide encouraging results that are worthy of serious consideration for patients who are in end stages of illness, including older persons and those with minimal computer experience. Increasing availability of technology can provide innovative methods for improving care provided to patients facing significant cancer-related pain even at the end of life.
BACKGROUND: With increased demand for palliative care (PC), the World Health Organisation (WHO) have called for PC teaching to be made routine. However, medical students report feeling unprepared in dealing with end-of-life care. Necessary benchmarking of the preparedness of clinicians to provide PC is required to identify where current training is sub-optimal and ensure future doctors are equipped to meet the needs of their patients. The aim of this study is to assess the utility of an electronic International Medical Education in Palliative Care (IMEP-e) assessment tool that examines the preparedness of clinicians to provide PC.
METHODS: A multi-phase pilot study. Phase 1: To transpose the Self-Efficacy Palliative Care Scale (SEPCs) and the Thanatophobia Scale (TS) to an electronic format and evaluate its utility. Phase 2: To assess the effects of PC teaching by comparing data from year three (Y3) and year five (Y5 - who have participated in PC placement) medical students. Scales: The 23 item SEPC and 7 item TS assess attitudes towards caring for dying patients.
RESULTS: Total questionnaires sent =360 (280 Y3, 80 Y5). Total response rate = 46.39%, n = 167 (127 Y3, 40 Y5). Completed data: n = 125 (95 Y3, 30 Y5). Analysis identified statistically significant differences (p < 0.001) between year groups across all subscales of the SEPC; communication skills (t = - 13.52), Pain and Treatment management (t = - 14.25) and multidisciplinary management (t = - 7.89). The TS shows a statistically significant increased positive attitudes (z = - 2.85 p < 0.005). From the focus group, three themes were identified from the qualitative feedback including university based teaching, hospice based teaching and utility of IMEP-e tool.
CONCLUSION: The IMEP-e tool is a viable and comparable method for collecting data on the preparedness to practice PC. A larger scale study is needed to determine and evaluate if, and how, preparing clinicians to work in PC has been adapted in to routine training.
BACKGROUND: Although palliative care is recognized as an important component of medical school curricula, the content and structure of education in the field is variable and often lacks outpatient exposure. We aimed to develop and implement a palliative care clinical elective for fourth-year medical students incorporating both inpatient and outpatient learning.
METHODS: Fourteen medical students participated in a palliative care elective which included 2 weeks on an inpatient consult service and 1 week of outpatient clinic and home hospice visits. The elective was evaluated using a focus group and previously validated surveys assessing self-rated competency and attitudes toward caring for palliative care patients. Data were analyzed using paired t tests to compare survey response means before and after the elective.
RESULTS: Of the 14 participating students, 7 completed both the pre- and postelective surveys. Significant improvements in self-rated competency were seen in pain and symptom management (P < .001), communication (P < .001), and advance care planning (P < .01). Survey results also showed improvement in attitudes toward caring for dying patients (P < .001), with lower scores at the end of the elective suggesting reduced emotional distress. Although the outpatient component was hypothesized to be a major benefit of the curriculum, qualitative data revealed the most highly valued component to be direct observation and feedback during inpatient time.
CONCLUSION: Given the highlighted importance of direct observation and feedback as a unique and powerful learning experience, future work should be targeted toward enhancing the quality and timeliness of feedback delivered by the palliative care interdisciplinary team.
"When death knocks at the door of our ward, we do not easily open the door", an intensivist once said. In the intensive care unit (ICU) and emergency department, care is strongly focused on cure and resuscitation. Notwithstanding the technological progress made in intensive and emergency medecine, a substantial number of the partients admitted to the ICU cannot be saved.
Context: Providing patient care at the end of a patient's life is a humbling and sacred experience for both patient and provider. Without a truthful and meaningful conversation about end-of-life care preferences, the care that is delivered may not be the care that the patient prefers.
bjectives: Determine if there is a relationship between level of training, confidence, and presence of decisional conflict in making an accurate prognosis for 2 standardized cases. Additionally, we evaluated the correctness of the prognosis as measured against survival outcomes for patients with similar diagnoses.
Methods: Decisional conflict was measured with the SURE tool, a validated 4-item tool that has been used in assessing for the presence of decisional conflict.
Results: Following analysis of data, it was found that providers with no decisional conflict were much more likely to be attendings with more than 5 years' experience. Providers were more conflicted overall when confronted with a case with a more grave prognosis. It was determined that providers with a lower level of training were more likely to have decisional conflict.
Conclusions: Provider confidence increases and decisional conflict decreases as one increases their level of training. However, the degree in which the provider is correct in their prognosis does not change as one increases their level of training. These findings have broad implications on patients, providers, and the health-care system.
This study developed an end-of-life (EOL) care nursing knowledge scale for Japanese geriatric nurses (ELNKS-JG) to measure nurse knowledge of EOL care for older adults. It also was used to evaluate the quality of The End-of-Life Nursing Education Consortium–Japan Geriatric. Participants were 1168 nurses employed in 32 institutions across Japan. The items of our measure were developed to cover 8 important topics: principles of EOL care for older adults; pain management; symptom management; ethics of care; cultural and spiritual considerations; communication; loss, grief, and bereavement; and caring for final days. The measure included 51 items with an overall Cronbach a coefficient of 0.87 and an intraclass correlation coefficient of 0.81. Our measure, the ELNKS-JG, was confirmed to have good internal consistency, test-retest reliability, content validity, and known-groups validity. This scale’s items included knowledge about noncancerous diseases, physical changes due to aging, family care, and multidisciplinary collaboration. The ELNKS-JG comprehensively measures a nurse’s knowledge of EOL care for older adults in any EOL setting. Furthermore, this scale can evaluate educational programs aimed at improving care quality and encouraging related activities in facilities that provide EOL care.
Introduction: the concept of total suffering is well known to palliative care, and it indicates that there are several complex and correlated factors, which contribute to a dynamic and unique experience of one's illness trajectory. Research on terminally ill patients' will to live (WtL) has revealed important insights on its fluctuations over time and its correlated factors. We report an N-of-1 case study with the aim of examining the concept of total suffering objectively, and the WtL trajectory over time, its fluctuations, as well as its possible correlation with other distressing symptoms in a terminally ill cancer patient.
Case Description: souffrA 72-year-old cancer patient who verbalized total suffering and a low WtL. We used the Edmonton Symptom Assessment Scale (ESAS), added an additional WtL question, and asked the patient to rate her suffering using the ESAS twice daily (morning and afternoon) for a period of 28 days. Spearman's correlation coefficients between all physical and psychosocial ESAS items were statistical significant in 34 of the 45 performed correlations (30 highly significantly correlations and 4 in a lesser degree). WtL trajectory was fluctuant through the course of the illness, and significant correlations between WtL and all ESAS items were found, except for shortness of breath and drowsiness (after Bonferroni correction). High positive correlations were found between WtL and ESAS total score and ESAS physical and psychological subscores.
Discussion: Developing evidence-based understanding of total suffering and WtL in the terminally ill will lead to better approaches to patients and their loved ones.
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.