Palliative care has long recognized the importance of treating the whole person to address a patient's physical, mental, and spiritual suffering. To address psychological suffering, palliative care often draws upon the pharmacotherapy and psychotherapy offered by psychiatry. Several new developments have occurred in the past decade within psychiatry that impact palliative care. For example, the recent updating of the Diagnostic and Stastistical Manual of Mental Disorders has led to renewed discussions on how to best distinguish grief from depression or recognize that both may be present at the same time. In this article, we draw upon a team of psychiatric, palliative care, and dual-trained physicians to highlight the “Top 10” tips from psychiatry to provide relief for patients with chronic disease or at the end of life.
Context: There has been surprisingly little attention to conceptual and methodological issues that influence the measurement of discretionary utilization at the end-of-life (DIALs), an indicator of quality care.
Objective: To examine how DIALs have been operationally defined, and identify areas where evidence is biased or inadequate to inform practice.
Methods: We conducted a scoping review of the English language literature published from 1/1/04-6/30/17. Articles were eligible if they reported data on =2 DIALs within 100 days of the deaths of adults =18 years old. We explored the influence of research design on how researchers measure DIALs and whether they examine demographic correlates of DIALs. Other potential biases were explored.
Results: We extracted data from 254 articles published in 79 journals covering research conducted in 29 countries, mostly on cancer (69.1%). More than 100 DIALs have been examined. Relatively crude, simple variables (e.g., ICU admissions [56.9% of studies], chemotherapy [50.8%], palliative care [40.0%]) have been studied more frequently than complex variables (e.g., burdensome transitions; 7.3%). We found considerable variation in the assessment of DIALs, illustrating the role of norms and disciplinary habit. Variables are typically chosen with little input from the public (including patients or caregivers) and clinicians. Fewer than half the studies examined age (44.6%), gender (37.3%), race (26.5%), or socioeconomic (18.5%) correlates of DIALs.
Conclusions: Unwarranted variation in DIALs assessments raises difficult questions concerning how DIALs are defined, by whom, and why. We recommend several strategies for improving DIALs assessments. Improved metrics could be used by the public, patients, caregivers, clinicians, researchers, hospitals, health systems, payers, governments, and others to evaluate and improve end-of-life care.
BACKGROUND: The distress of patients suffering from a terminal illness can lead to a state of despair and requests for euthanasia and assisted suicide. It is a major challenge for palliative care workers. The Distress Thermometer (DT) is recommended by the National Comprehensive Cancer Network as a means of more easily assessing distress. It is available as a Self-assessment reported Distress Thermometer, but for a wider use in palliative care it should also be implemented in the form of a clinician-reported outcome (clinRO). Clinicians need to rate patient's distress when the patient is not able to do so (subject that cannot be addressed, defensive patient…). The primary aim of the quantitative study was to assess the validity of the Clinician-Rated Distress Thermometer in palliative care.
METHOD: The assessments were performed by teams working in three palliative care centres. The primary endpoint was concordance between the patient and clinicians’ responses via Lin’s concordance coefficient. Eligible patients were aged 18 years or older, suffering from a severe disease in the palliative phase, and with a sufficient level of awareness to consent to participate in the study. A total of 51 patients were recruited, 55% were male, with a mean age of 65.8 years [39–90 years].
RESULTS: Three hundred sixty-four clinician-Rated Distress Thermometer and 467 Self-Reported Distress Thermometer were performed. Only 364 of the 467 Self-Reported Distress Thermometer were used for the study, as investigators did not systematically ask the patient to give an account of his distress. Concordance between patient and clinician responses: The Lin's concordance coefficient with a threshold (alpha) of 5% was 0.46 [0.38; 0.54]. At the first assessment, it was 0.61 [0.44; 0.79]. The Cohen's kappa coefficient was 0.52, with a concordance rate of 79.6%. The sensitivity was 82.9% [66.4-93.4] and the specificity 71.4% [41.9-91.6].
CONCLUSION: The first assessment gave the best results in terms of concordance between Clinician-Rated DT and Self-Reported DT. In the next assessments, the Clinician-Rated DT were less consistent with the patients' Self-Reported DT.
Background: An interdisciplinary palliative care team began exploring evaluation tools used to assess changes in the knowledge, skills, and attitudes of learners participating in clinical learning experiences on an interdisciplinary palliative care consult service. This article will review existing evaluation tools, examine the themes that emerge, discuss their strengths and limitations, and make recommendations for continued development in the field.
Methods and Findings: A literature search was performed using the MEDLINE database. Search terms included combinations of the following: interdisciplinary education, assessment/evaluation, and palliative care or palliative care assessment/test. Four hundred eighty-seven articles were captured during the initial search. Articles that focused on student readiness for interdisciplinary education and team self-assessments of current interdisciplinary collaboration practices were excluded. Nine articles were included in the review. Evaluation tools varied in terms of learner type, assessment type, and frequency. No tool was comprehensive in the assessment of knowledge, skills, and attitudes or truly interdisciplinary.
Conclusions: There is a lack of comprehensive and interdisciplinary evaluation tools in the published literature. Further research should be conducted to develop a tool that meets the needs of learners in clinical experiences within an interdisciplinary service.
BACKGROUND: While early-integrated palliative home care (PHC) is believed to be beneficial for COPD patients, trials testing this hypothesis are rare and show inconclusive results.
AIM: To test feasibility, acceptability and preliminary effectiveness of early-integrated PHC for end-stage COPD.
METHOD: Testing a six-month early-integrated PHC pilot RCT given by PHC nurses for end-stage COPD with five components: (1) pre-inclusion COPD support training for PHC nurses; (2) monthly PHC visits; (3) leaflets on coping mechanisms; (4) a protocol on symptom management and support, a care and action plan; (5) integration of PHC and usual care through reporting and communication mechanisms. Patient-reported outcomes were assessed six-weekly. Participants and healthcare professionals involved were interviewed.
RESULTS: Of 70 eligible patients, 39 (56%) participated (20:19 intervention-control) and 64% completed the trial. A patient received on average 3.4 PHC visits, mainly for disease insight, symptom management and care planning. Nurses distributed all reports but hardly connected with health professionals except general practitioners (GPs); 8/10 interviewed patients referred to the psychosocial support, breathing exercises and care decisions as helpful. Some GPs criticised PHC being given too early but pulmonologists and PHC nurses did not. Effectiveness analysis showed no overall intervention effect for the outcomes, but between baseline and week 24 fewer hospitalisations in the control group (p=0.03) and a trend of higher perceived quality of care in the intervention group (p=0.06) was found. A clinically relevant difference was observed at week 24 for health-related quality of life in favour of the control group.
CONCLUSION: Our intervention on early-integrated PHC for end-stage COPD is feasible and accepted but did not yield the anticipated preliminary effectiveness. Before moving to a Phase III-trial, enhanced coordination of care, more GP involvement, more intensive training for PHC nurses in COPD support and revision of the trial design, e.g. of targeted outcomes in line with individual patient goals and care preferences should be improved.
BACKGROUND: European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects' diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument's focus.
METHODS: After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument.
RESULTS: A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument's focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument.
CONCLUSIONS: The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.
Background: Dyspnea is one of the most common symptoms in patients with advanced disease and terminal illness, associated with poorer quality of life. The efficacy of fan therapy to palliate dyspnea is inconsistent and unclear.
bjective: The aim of this meta-analysis was to evaluate the efficacy of fan therapy for the relief of dyspnea in adults with advanced disease and terminal illness.
Design: The CENTRAL, MEDLINE, EMBASE, CINAHL, and PsycINFO were searched to retrieve all randomized controlled trials examining the benefits of fan therapy for the relief of dyspnea in patients at the advanced stages of illness. Risk of bias was assessed according to the Cochrane Collaboration standard scheme.
esults: Five studies involving 198 adults were identified. Fan therapy was associated with a significant relief of breathlessness intensity immediately after intervention (mean differences [MDs], -1.01; 95% confidence interval [CI], -1.57 to -0.45; p < 0.001) and 10 minutes after intervention (MDs, -0.90; 95% CI, -1.53 to -0.27; p = 0.005). Long-term application of fan therapy for at least one month was not related to changes of dyspnea severity (MDs, 0.10; 95% CI, -1.14 to 1.35; p = 0.870). However, significant heterogeneity and low quality of the included trials limit applicability of the results in general practice. No difference was found in activity performance, respiratory rate and SpO2, changes in other symptom intensities, and adverse events.
onclusion: Current trials provided low-quality evidence for a significant short-term effect after fan therapy in the relief of dyspnea and no beneficial effect in the long-term application in adults with advanced disease and terminal illness.
BACKGROUND: Thirst is prevalent among patients in intensive care units. A research-based "thirst bundle" was shown to significantly decrease thirst in these patients.
OBJECTIVE: To implement a research-based thirst intervention performed by intensive care unit nurses and patients' family members.
METHODS: Nurses and family members were taught the thirst intervention through video training and project team reinforcement. The intervention was performed by nurses for 123 patients and by family members for 13 patients. Thirst was measured with a numeric rating scale of 0 to 10, a word scale of 0 to 3, or "yes/no" answers, whichever was easiest for the patient. Inferential statistics were used to assess changes in thirst scores over time. Also assessed were nurse and family member burden levels, family level of satisfaction, and patient enjoyment.
RESULTS: Thirst scores on the numeric rating scale decreased significantly: from a mean (SD) of 7.9 (2.0) before to 3.9 (2.7) after the intervention for nurses (P < .001); and from 9.2 (1.5) to 5.3 (2.6) for family members (n = 13; P = .002). Word scale scores also decreased significantly, from a median (interquartile range) of 3 (3-3) before to 2 (1-2) after the intervention for nurses (P < .001). Most patients (96%) reported enjoying the procedure. Median burden levels were less than 2 on a numeric rating scale of 0 to 10.
CONCLUSIONS: The palliative "thirst bundle" significantly alleviated patients' thirst and resulted in little caregiver burden. Further efforts are warranted to incorporate this intervention into intensive care unit practice.
Les soins palliatifs pédiatriques visent à promouvoir la meilleure qualité de vie des enfants. Cependant, mesurer cette qualité de vie, qui est un construit hautement subjectif et multidimensionnel, est complexe car il faut tenir compte de l’hétérogénéité des maladies, des âges, des trajectoires de soins ainsi que des types d’interventions. Actuellement, la plupart des instruments de mesure ne tiennent pas suffisamment compte de la perspective des enfants au sujet de ce qui est important pour eux. De plus, la pertinence de certaines propriétés psychométriques des outils standardisés existants a été questionnée dans le contexte particulier des soins palliatifs pédiatriques.
The study examined the influence of training on first-year nursing department students’ attitudes on death and caring for dying patients. Utilizing the experimental model, the study sample consisted of 81 first-year students attending the nursing department of a university. Death Attitude Profile-Revised and Frommelt Attitude toward Care of the Dying Scale were used for data collection. Data analysis included means, standard deviation, and t test for related samples. Student attitudes toward death were measured as 146.43 (16.741) and 152.75 (15.132) for pre- and posttraining, respectively. Student attitudes toward caring for dying patients were established to be 103.02 (7.655) during pretraining period and 111.02 (10.359) at posttraining period. The difference between pre- and posttests for mean attitudes toward death and caring for the dying patient was statistically significant. Study results determined that training was effective in forming positive student attitudes toward death and caring for dying patients.
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.