The assessment and management of family distress during palliative care.
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ABSTRACT:
SUBMITTER: Zaider T
PROVIDER: S-EPMC5557503 | biostudies-other | 2009 Mar
REPOSITORIES: biostudies-other
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Project description:Delirium is a neurocognitive syndrome arising from acute global brain dysfunction, and is prevalent in up to 42% of patients admitted to palliative care inpatient units. The symptoms of delirium and its associated communicative impediment invariably generate high levels of patient and family distress. Furthermore, delirium is associated with significant patient morbidity and increased mortality in many patient populations, especially palliative care where refractory delirium is common in the dying phase. As the clinical diagnosis of delirium is frequently missed by the healthcare team, the case for regular screening is arguably very compelling. Depending on its precipitating factors, a delirium episode is often reversible, especially in the earlier stages of a life-threatening illness. Until recently, antipsychotics have played a pivotal role in delirium management, but this role now requires critical re-evaluation in light of recent research that failed to demonstrate their efficacy in mild- to moderate-severity delirium occurring in palliative care patients. Non-pharmacological strategies for the management of delirium play a fundamental role and should be optimized through the collective efforts of the whole interprofessional team. Refractory agitated delirium in the last days or weeks of life may require the use of pharmacological sedation to ameliorate the distress of patients, which is invariably juxtaposed with increasing distress of family members. Further evaluation of multicomponent strategies for delirium prevention and treatment in the palliative care patient population is urgently required.
| S-EPMC5613058 | biostudies-literature
Project description:ContextFamily caregivers (FCs) of cancer patients play a crucial role in managing their care partner's pain, but little research has examined FCs' specific challenges regarding the provision of pain management (PM) to cancer patients receiving palliative care.ObjectivesTo determine the demographic and clinical characteristics of FCs who encounter challenges in PM and to elucidate the specific challenges that FCs face when managing pain for their care partner with cancer.MethodsWe conducted a secondary analysis of 40 interview transcripts of FCs who were caring for persons with cancer. Interviews were audio-recorded, transcribed verbatim, and analyzed using deductive thematic analysis.ResultsThe three major identified challenges to PM for FCs of persons with cancer were: (1) communication and teamwork issues, (2) caregiver-related issues, and (3) patient-related issues. Communication and teamwork issues encompassed caregivers' receipt of inadequate information regarding PM, and inappropriate and ineffective communication from the healthcare team. Caregiver issues pertained to caregivers' fear and beliefs, concurrent responsibilities, and lack of pain-related knowledge and skills. Patient issues related to their own fear and beliefs, psychological and physiological well-being, adherence to medications, and reluctance to report pain.ConclusionFindings of this study have implications for future research and practice related to cancer PM in palliative care. Results suggest the need for FC training in PM as well as clear clinical practice guidelines and resources to help providers prepare, educate, and communicate with FCs regarding PM.
| S-EPMC10201988 | biostudies-literature
Project description:BackgroundPalliative care professionals have had to adapt to rapidly changing COVID-19 restrictions with personal protective equipment and physical distancing measures impacting face-to-face communication with patients and relatives.AimTo explore the narratives of palliative care doctors working during the pandemic to understand their experiences at a personal and professional level.DesignIn-depth narrative interviews were carried out via video call. Interviews were transcribed verbatim and analysed using a joint paradigmatic and narrative approach to elucidate common themes and closely explore individual narratives.Setting/participantsEight palliative care doctors who had worked on a hospice inpatient unit in the UK before and during the pandemic were recruited from two hospices in Scotland.ResultsThree intersecting themes are described, the most significant being moral distress. Participants articulated a struggle to reconcile their moral convictions with the restrictions enforced, for example, wanting to provide support to patients through physical proximity but being unable to. To differing degrees, this resulted in internal conflict and emotional distress. Two further themes arose: the first concerned a loss of humanity in interaction and a striving to re-humanise communication through alternative means; the second being a change in staff morale as the pandemic progressed.ConclusionsRestrictions had a considerable impact on palliative care doctors' ability to communicate with and comfort patients which led to moral distress and contributed to decreasing morale. Future research could explore moral distress in palliative care settings internationally during the pandemic with a view to compare the factors affecting how moral distress was experienced.
| S-EPMC9174577 | biostudies-literature
Project description:BackgroundThis study extended the original Dignity Therapy (DT) intervention by including partners and family caregivers (FCs) of terminally-ill cancer patients with the overall aim of evaluating whether DT can mitigate distress in both patients nearing the end of life and their FCs.MethodsIn this multicenter, randomized controlled trial (RCT), a total of 68 patients with life expectancy < 6 months and clinically-relevant stress levels (Hospital Anxiety Depression total score; HADStot ≥ 8) including their FCs were randomly assigned to DT, DT + (including their FCs), or standard palliative care (SPC) in a 1:1:1 ratio. Study participants were asked to complete a set of questionnaires pre- and post-intervention.ResultsThe coalesced group (DT and DT +) revealed a significant increase in patients' perceived quality of life (FACIT-Pal-14) following the intervention (mean difference 6.15, SD = 1.86, p < 0.01). We found a statistically significant group-by-time interaction effect: while the HADStot of patients in the intervention group remained stable over the pre-post period, the control group's HADStot increased (F = 4.33, df = 1, 82.9; p < 0.05), indicating a protective effect of DT. Most patients and their FCs found DT useful and would recommend it to other individuals in their situation.ConclusionsThe DT intervention has been well-received and shows the potential to increase HRQoL and prevent further mental health deterioration, illness burden and suffering in terminally-ill patients. The DT intervention holds the potential to serve as a valuable tool for facilitating end-of-life conversations among terminally-ill patients and their FCs. However, the implementation of DT within the framework of a RCT in a palliative care setting poses significant challenges. We suggest a slightly modified and less resource-intensive version of DT that is to provide the DT inventory to FCs of terminally-ill patients, empowering them to ask the questions that matter most to them over their loved one's final days.Trial registrationThis study was registered with Clinical Trial Registry (ClinicalTrials.gov -Protocol Record NCT02646527; date of registration: 04/01/2016). The CONSORT 2010 guidelines were used for properly reporting how the randomized trial was conducted.
| S-EPMC10938771 | biostudies-literature
Project description:IntroductionDespite continuously growing, palliative care in Thailand still needs further development. Many family physicians provide various levels of palliative care. However, there is no information regarding what aspects of palliative care family practitioners provide and how much confidence they have. This study aims to identify gaps between expected care domains and provided care and to reveal the domains in which family physicians are less confident.MethodThis study is a cross-sectional survey study. An online questionnaire was publicly published to recruit target participants, Thai family physicians who have received formal residency training and actively practice medicine. The estimated number of actively practising family physicians was 540 persons. Participants were asked which palliative care domains they provide and to rate their confidence in each. A narrative analysis was performed using two relevant frameworks.ResultOne hundred and seven responses were received. Forty-six per cent of participants have no further training in palliative care other than during their residency programs. At least 63.6 per cent of participants provide palliative care two half-day per week or less. Grief and spiritual care enjoyed the least percentage of the participant's responses regarding provided care. These two domains also received the lowest percentage of confidence in providing care from the participants.DiscussionThough they are considered essential domains, there are gaps between expected care and actual care in grief management and spiritual care. Grief and bereavement care are mentioned in the residency curriculum; nonetheless, there is an inconsistency regarding spiritual care. Increasing access to continuous education and integrating it into curriculums should be considered to reduce the gaps. Additionally, a national guideline regarding levels of palliative care and the roles of family physicians will benefit from establishing comprehensive palliative care programmes.
| S-EPMC10552241 | biostudies-literature
Project description:Given the particularity of spirituality in the Indian context, models and tools for spiritual care that have been developed in Western countries may not be applicable to Indian palliative care patients. Therefore, we intended to describe the most common signs of spiritual distress in Indian palliative care patients, assess differences between male and female participants, and formulate contextually appropriate recommendations for spiritual care based on this data.Data from 300 adult cancer patients who had completed a questionnaire with 36 spirituality items were analyzed. We calculated frequencies and percentages, and we compared responses of male and female participants using Chi-squared tests.Most participants believed in God or a higher power who somehow supports them. Signs of potential spiritual distress were evident in the participants' strong agreement with existential explanations of suffering that directly or indirectly put the blame for the illness on the patient, the persistence of the "Why me?" question, and feelings of unfairness and anger. Women were more likely to consider illness their fate, be worried about the future of their children or spouse and be angry about what was happening to them. They were less likely than men to blame themselves for their illness. The observations on spirituality enabled us to formulate recommendations for spiritual history taking in Indian palliative care.Our recommendations may help clinicians to provide appropriate spiritual care based on the latest evidence on spirituality in Indian palliative care. Unfortunately, this evidence is limited and more research is required.
| S-EPMC5545957 | biostudies-other
Project description: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.
| S-EPMC6798346 | biostudies-literature
Project description:Pena-Shokeir syndrome (PSS) type 1, also known as fetal akinesia deformation sequence, is a rare genetic syndrome that almost always results in intrauterine or early neonatal death. It is characterized by markedly decreased fetal movements, intrauterine growth restriction, joint contractures, short umbilical cord, and features of pulmonary hypoplasia. Antenatal diagnosis can be difficult. Ultrasound features are varied and may overlap with those of Trisomy 18. The poor prognosis of PSS is due to pulmonary hypoplasia, which is an important feature that distinguishes PSS from arthrogryposis multiplex congenital without pulmonary hypoplasia, which has a better prognosis. If diagnosed in the antenatal period, a late termination of pregnancy can be considered following ethical discussion (if the law allows). In most cases, a diagnosis is only made in the neonatal period. Parents of a baby affected with PSS require detailed counseling that includes information on the imprecise recurrence risks and a plan for subsequent pregnancies.
| S-EPMC6207248 | biostudies-literature
Project description:ImportancePalliative care consultations in intensive care units (ICUs) are increasingly prompted by clinical characteristics associated with mortality or resource utilization. However, it is not known whether these triggers reflect actual palliative care needs.ObjectiveTo compare unmet needs by clinical palliative care trigger status (present vs absent).Design, setting, and participantsThis prospective cohort study was conducted in 6 adult medical and surgical ICUs in academic and community hospitals in North Carolina between January 2019 and September 2020. Participants were consecutive patients receiving mechanical ventilation and their family members.ExposurePresence of any of 9 common clinical palliative care triggers.Main outcomes and measuresThe primary outcome was the Needs at the End-of-Life Screening Tool (NEST) score (range, 0-130, with higher scores reflecting greater need), which was completed after 3 days of ICU care. Trigger status performance in identifying serious need (NEST score ≥30) was assessed using sensitivity, specificity, positive and negative likelihood ratios, and C statistics.ResultsSurveys were completed by 257 of 360 family members of patients (71.4% of the potentially eligible patient-family member dyads approached) with a median age of 54.0 years (IQR, 44-62 years); 197 family members (76.7%) were female, and 83 (32.3%) were Black. The median age of patients was 58.0 years (IQR, 46-68 years); 126 patients (49.0%) were female, and 88 (33.5%) were Black. There was no difference in median NEST score between participants with a trigger present (45%) and those with a trigger absent (55%) (21.0; IQR, 12.0-37.0 vs 22.5; IQR, 12.0-39.0; P = .52). Trigger presence was associated with poor sensitivity (45%; 95% CI, 34%-55%), specificity (55%; 95% CI, 48%-63%), positive likelihood ratio (1.0; 95% CI, 0.7-1.3), negative likelihood ratio (1.0; 95% CI, 0.8-1.2), and C statistic (0.50; 95% CI, 0.44-0.57).Conclusions and relevanceIn this cohort study, clinical palliative care trigger status was not associated with palliative care needs and no better than chance at identifying the most serious needs, which raises questions about an increasingly common clinical practice. Focusing care delivery on directly measured needs may represent a more person-centered alternative.
| S-EPMC8777568 | biostudies-literature
Project description:BackgroundIn this study, we aimed to develop and validate an instrument that could be used by patients with cancer to evaluate their quality of palliative care.MethodsDevelopment of the questionnaire followed the four-phase process: item generation and reduction, construction, pilot testing, and field testing. Based on the literature, we constructed a list of items for the quality of palliative care from 104 quality care issues divided into 14 subscales. We constructed scales of 43 items that only the cancer patients were asked to answer. Using relevance and feasibility criteria and pilot testing, we developed a 44-item questionnaire. To assess the sensitivity and validity of the questionnaire, we recruited 220 patients over 18 years of age from three Korean hospitals.ResultsFactor analysis of the data and fit statistics process resulted in the 4-factor, 32-item Quality Care Questionnaire-Palliative Care (QCQ-PC), which covers appropriate communication with health care professionals (ten items), discussing value of life and goals of care (nine items), support and counseling for needs of holistic care (seven items), and accessibility and sustainability of care (six items). All subscales and total scores showed a high internal consistency (Cronbach alpha range, 0.89 to 0.97). Multi-trait scaling analysis showed good convergent (0.568-0.995) and discriminant (0.472-0.869) validity. The correlation between the total and subscale scores of QCQ-PC and those of EORTC QLQ-C15-PAL, MQOL, SAT-SF, and DCS was obtained.ConclusionThis study demonstrates that the QCQ-PC can be adopted to assess the quality of care in patients with cancer.
| S-EPMC5836356 | biostudies-literature