Accumulating evidence suggests that a dementia diagnosis, for many, triggers feelings of grief, and often marks the first of many losses that will be experienced by both the person who has received the diagnosis and their loved ones, as the disease progresses. Previous research has also revealed that carers who report higher levels of pre-death grief are at greater risk of complicated grief after their loved one has died. Despite this evidence, appropriate bereavement support for people bereaved by dementia is a significant unmet need.
The Bereaved by Dementia project was delivered collaboratively by Cruse Cymru and Alzheimer’s Cymru to address the bereavement needs of people bereaved by dementia throughout Wales. This paper draws on an independent evaluation of the Bereaved by Dementia Project conducted by Aston University and the University of Bristol. We summarise our main findings, recommendations, and suggestions for future research.
Background: Difficulty sleeping is a common symptom for patients living with cancer that significantly affects their lives. However, although sleep disorders are common, it is an overlooked problem in cancer care.
Purpose: This study assessed the prevalence of sleep disturbances among patients living with cancer, and assessed the adequacy of sleep assessment and intervention for patients from both nurses' and patients' perspectives.
Method: Descriptive, cross-sectional and correlational design was used in this study. A convenience sample of 129 patients with cancer and 113 registered nurses working with cancer patients was recruited. A structured face-to-face interview was used to complete the patients' questionnaires and a self-administered questionnaire was given to nurses.
Findings: The majority of patients with cancer reported having poor sleep quality (69.8%). About 86.7% (n=98) of nurses reported that they have never screened patients with cancer for any sleep problems, and 76.7% (n=99) of the patients reported that they have never been assessed for sleep problems by the nursing staff during hospitalisation. Only 8% of patients with cancer who reported having problems sleeping to a nurse received interventions to promote better sleep.
Conclusion: Assessment of sleep disturbances in patients with cancer should be unified using a comprehensive reliable valid instrument, as well as providing evidence-based interventions according to patient's need. A written policy should be introduced to encourage sleep documentation and to make sleep care for patients part of routine nursing care.
Background: Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this.
Aim: To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals.
Design: Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability.
Setting/participants: Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated.
Results: A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool’s content and wording.
Conclusion: The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.
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.
We would like to thank Wen Yang Goh and Han Yee Neo for their interest in and valuable comments to our recently published article. They highlight key conceptual differences between geriatric assessment and comprehensive geriatric assessment and point to the distinction between vulnerability and frailty.
[Début de l'article]
BACKGROUND: CaseSearch 'My Learning' e-learning modules were designed to remind clinicians and practitioners about the role of evidence in practice and demonstrate how to find relevant evidence to make a difference in clinical care. This study aims to describe the role of the modules and their uptake, and determine whether the modules influenced the learners' palliative care practice and whether the modules were easy to use.
METHOD: Two sets of questions were designed to capture data to evaluate the modules.
FINDINGS: The modules supported the awareness and use of evidence by health professionals. The modules contribute to ongoing professional development for practitioners and can improve palliative care practice.
CONCLUSION: It is possible to collect meaningful data that contributes to understanding who uses e-learning resources and how useful healthcare professionals find them.
Well-designed, rigorously implemented instrumentation studies are essential to develop valid, reliable pain assessment tools in non-communicative (non-self-reporting) palliative care patients. When conducting a pain instrumentation study, a research team identified methodologic challenges surrounding informed consent, eligibility criteria, acute pain operational definitions, patient recruitment, missing data, and study-related training during a run-in phase at the beginning of the project and during the conduct of the study. The team dealt with these challenges through identifying root causes, implementing remedial measures, and collecting data to demonstrate improvement or resolution. Effective strategies included obtaining Institutional Review Board (IRB) approval for a waiver of informed consent, modifying eligibility criteria, ensuring that operational definitions and study procedures were consistent with clinical practice, decreasing time from screening to data collection to improve recruitment, increasing study nurse staffing by re-budgeting grant funds, focusing time and resources on high accruing clinical units, revising processes to minimize missing data, and developing detailed training for users of the instrument. With these multi-pronged solutions, the team exceeded the patient accrual target by 25% within the funding period and reduced missing data. While pain instrumentation studies in non-communicative patients have similar challenges to other palliative care studies, some of the solutions may be unique and several are applicable to other palliative care studies, particularly instrumentation research. The team's experience may also be useful for funders and IRBs.
Care provided by family is the backbone of palliative care in Canada. The critical roles performed by caregivers can at the same time be intensely meaningful and intensely stressful. However, experiences of caregiving can be enhanced when caregivers feel they are making informed and reflective decisions about the options available to them. With this in mind, the purpose of this five-phase research project was to create a Family Caregiver Decision Guide (FCDG). The Guide entails four steps: thinking about the current caregiving situation, imagining how the caregiving situation may change, exploring available options, and considering best options if caregiving needs change. The FCDG was based on available evidence and was developed and refined using focus groups, cognitive interviewing, and a feasibility and acceptability study. Finally, an interactive version of the Guide was created for online use ( https://www.caregiverdecisionguide.ca ). In this article, we describe the development, evaluation, and utility of the FCDG.
Palliative care in Parkinson's disease (PD) has developed significantly in the past five years. The presence of unmet palliative care need, similar to that in malignant conditions, is well established, but may not always be identified by clinicians in everyday practice. To address this, clinicians must be able to rapidly identify, triage, assess and address unmet needs and monitor response to intervention. This is also central to establishing integrated models of care for PD. Systematic evaluation of need can be facilitated by structured assessment tools, and several such tools have now been described for PD. This article reviews the palliative care assessment tools which have been developed for PD, both for patients and also for caregivers. It sets out the psychometric properties of these tools and describes the way in which they may be applied within an overall, systematic assessment of unmet need.
Most people die when they are old, but predicting exactly when this will occur is unavoidably uncertain. The health of older people is challenged by multimorbidity, disability and frailty. Frailty is the tendency to crises or episodes of rapid deterioration. These are often functional or non-specific in nature, such as falls or delirium, and recovery is usually expected. Health-related problems can be defined in terms of distress and disability. Distress is as often mental as physical, especially for people with delirium and dementia. Problems can be addressed using the principles of supportive and palliative care, but there is rarely a simple solution. Most problems do not have a palliative drug treatment, and the propensity to adverse effects means that drugs must be used with caution. Geriatricians use a model called comprehensive geriatric assessment, including medical, functional, mental health, social and environmental dimensions, but also use a variety of other models, such as the acute medical model, person-centred care, rehabilitation, alongside palliative care. Features such as communication, family engagement and advance planning are common to them all. These approaches are often consistent with each other, but their commonalities are not always recognised. The emphasis should be on making the right decision at a given point in time, taking account of what treatment is likely to deliver benefit, treatment burden and what is wanted. Choices are often limited by what is available and feasible. Palliative care should be integrated with all medical care for frail older people.
Background: Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients.
Objective: We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results: We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions: Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.
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.
INTRODUCTION: The purpose of the study was to evaluate the palliative advanced practice radiation therapy (APRT) role with respect to the impact on waiting times for patients from referral to radiation treatment delivery, the ability of the APRT to define palliative radiation therapy fields and patient satisfaction. The evaluation of the impact of the APRT role and referral pathway on patient waiting times has been previously published.
METHODS: Patients were allocated to two different pathways; APRT and standard. Patients in the APRT pathway had their radiotherapy treatment managed by the APRT including defining their palliative fields blinded to the radiation oncologist (RO).
RESULTS: Of the 150 palliative patients, 94 had their radiation therapy managed by the APRT and 56 were managed through the standard pathway. 82/92 APRT defined fields were accepted by the RO.
CONCLUSIONS: Inter-observer variability between the APRT and the RO in defining palliative radiation therapy fields is similar to that reported in the literature between clinicians. With previously published reduced wait times from referral to treatment for palliative patients, the establishment of the APRT role is justified.
BACKGROUND: Many hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient's hospitalization.
OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults.
DESIGN: Observational study at three hospitals in a Midwest metropolitan area.
PARTICIPANTS: Hospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study.
MAIN MEASURES: Communication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4-6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems).
KEY RESULTS: The mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate–severe anxiety); 29% reported depression, (14.0% moderate–severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001).
CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.
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.
OBJECTIVE: The aim of this study was to translate the Palliative Performance Scale (PPSv2) into Arabic and to test the reliability and validity of the PPS Arabic translation (PPS-Arabic).
METHOD: The PPSv2 was translated into Modern Standard Arabic using a forward-backward method. Inter-rater and intra-rater reliabilities were tested in a pilot study that included 20 patients. The validation study included 150 cancer patients. Patients were divided according to their treatment plan into three groups (in-remission, palliative chemotherapy, and best supportive care) to perform hypothesis-testing construct validity. Validity was further evaluated by correlating PPS-Arabic with the Karnofsky Performance Scale (KPS), the Eastern Cooperative Oncology Group (ECOG) scale, and Physical Functioning (PF2) and Role Functioning (RF2) scales of the European Organization for Research and Treatment of Cancer quality of life questionnaire (EORTC QLQ-C30).
RESULTS: The intraclass correlation coefficients for the intra-rater and inter-rater reliability were 0.935 (95% CI: 0.88-0.965; p < 0.001) and 0.965 (95% CI: 0.934-0.981; p < 0.001), respectively. The PPS-Arabic internal consistency Cronbach's alpha was 0.986. The average PPS-Arabic score differed significantly (p < 0.001) between the three groups of patients being 89 for in-remission, 58 for palliative chemotherapy, and 38 for best supportive care. The PPS-Arabic score correlated significantly (p < 0.001) with the KPS, ECOG performance scale, and the EORTC QLQ-C30 PF2 and RF2 scales.
CONCLUSION: The PPS-Arabic is a reliable and valid tool for the assessment of performance status of cancer patients.
INTRODUCTION: Almost all patients with end-of-life cancer experience cancer-related fatigue; however, there are only a few known effective coping methods.
OBJECTIVES: We will conduct a prospective, multi-center, single-blinded randomized controlled study to evaluate the efficacy of acupuncture for cancer-related fatigue in patients with end-of-life cancer.
METHODS: We will enroll 120 patients with cancer hospitalized in a palliative care unit or receiving consultation from a palliative care team in four hospitals. We will add acupuncture treatment; specifically, contact needle therapy (CNT), consisting of an intervention per week period to the usual care. The primary outcome measure will be the Cancer Fatigue Scale (CFS) score while the secondary outcome measures will be the Numerical Rating Scale (NRS) score for fatigue, pain, and salivary amylase levels.
CONCLUSION: We will evaluate the possibility of using acupuncture therapy, that is, CNT, in relieving fatigue sensation in patients with advanced cancer.
TRIAL REGISTRATION: UMIN000028304, registered on July 21st, 2017; https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000032401.
PURPOSE: Many assert the need for home hospice care. However, limited research has shown its effectiveness. The authors of this study thus evaluated the effectiveness of a home hospice care pilot project regarding (1) early enrollment in hospice care, (2) efficient use of inpatient hospice resources, and (3) enabling terminally ill patients to stay at their preferred place of care.
METHODS: The authors conducted a nationwide prospective observational study. Patients were divided into home hospice care users (ever-users, n = 902) and inpatient-only hospice care users (never-users, n = 8210). Information about hospice service utilization was collected from a web-based registry system. Patients were registered if they started to receive the hospice service after providing written informed consent during the pilot project from March 2016-July 2017.
RESULTS: Most ever-users preferred to stay at home (84.0%), while never-users preferred hospital admission (66.9%). Most ever-users were enrolled in hospice by home care (78.9%) and used both home and inpatient care (72.4%). The overall duration of hospice care was significantly longer among ever-users than never-users (median 39 vs. 15 days, respectively; mean ± SD 59.6 ± 62.8 vs. 24.8 ± 32.1, respectively; p < .001). Participation in the pilot program improved bed utilization (p = .025) and turnover rate (p < .001) of inpatient hospice service.
CONCLUSIONS: Home hospice care enabled early enrollment in hospice services and provided a valid option to patients who wished to stay at home. Policy efforts to facilitate home hospice care are needed.
OBJECTIVES: The purpose of this study was to report the psychometric properties, in terms of validity and reliability, of the Unconscious Version of the Family Decision-Making Self-Efficacy Scale (FDMSE).
METHODS: A convenience sample of 215 surrogate decision-makers for critically ill patients undergoing mechanical ventilation was recruited from four intensive care units at a tertiary hospital. Cross-sectional data were collected from participants between days 3 and 7 of a decisionally impaired patient's exposure to acute mechanical ventilation. Participants completed a self-report demographic form and subjective measures of family decision-making self-efficacy, preparation for decision-making, and decisional fatigue. Exploratory factor analyses, correlation coefficients, and internal consistency reliability estimates were computed to evaluate the FDMSE's validity and reliability in surrogate decision-makers of critically ill patients.
RESULTS: The exploratory factor analyses revealed a two-factor, 11-item version of the FDMSE was the most parsimonious in this sample. Furthermore, modified 11-item FDMSE demonstrated discriminant validity with the measures of fatigue and preparation for decision-making and demonstrated acceptable internal consistency reliability estimates.
SIGNIFICANCE OF RESULTS: This is the first known study to provide evidence for a two-factor structure for a modified, 11-item FDMSE. These dimensions represent treatment and palliation-related domains of family decision-making self-efficacy. The modified FDMSE is a valid and reliable instrument that can be used to measure family decision-making self-efficacy among surrogate decision-makers of the critically ill.
BACKGROUND: Delirium, a neuropsychiatric syndrome that occurs throughout medical illness trajectories, is frequently misdiagnosed. The Memorial Delirium Assessment Scale (MDAS) is a commonly used tool in palliative care (PC) settings. Our objective was to establish and validate the Memorial Delirium Assessment Scale-Thai version (MDAS-T) in PC patients.
MATERIALS AND METHODS: The MDAS was translated into Thai. Content validity, inter-rater reliability, and internal consistency were explored. The construct validity of the MDAS-T was analyzed using exploratory factor analysis. Instrument testing of the MDAS-T, the Thai version of the Confusion Assessment Method for the Intensive Care Unit (CAM-ICU-T), and the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition as the gold standard was performed. The receiver operating characteristic (ROC) curve was used to determine the optimal cutoff score. The duration of each assessment was recorded.
RESULTS: The study enrolled 194 patients. The content validity index was 0.97. The intraclass correlation coefficient and Cronbach’s a coefficient were 0.98 and 0.96, respectively. A principal component analysis indicated a homogeneous, one-factor structure. The area under the ROC curve was 0.96 (95% confidence interval [CI], 0.93–0.99). The best combination of sensitivity and specificity (95% CI) of the MDAS-Twere 0.92 (0.85–0.96) and 0.90 (0.82–0.94), respectively,with a cutoff score of 9, whereas the CAM-ICU-T yielded 0.58(0.48–0.67) and 0.98 (0.93–0.99), respectively. The median MDAS-T assessment time was 5 minutes.
CONCLUSION: This study established and validated the MDAS-T as a good and feasible tool for delirium screening and severity rating in PC settings.
IMPLICATIONS FOR PRACTICE: Delirium is prevalent in palliative care (PC) settings and causes distress to patients and families, thereby making delirium screening necessary. This study found that the MDAS-T is a highly objective and feasible test for delirium screening and severity monitoring in PC settings and can greatly improve the quality of care for this population.