Journal of Palliative Care最新文献

Objective: To describe mouth disorders in patients undergoing palliative care (PC); to identify predisposing factors for oral disorders and pharmacological and nonpharmacological strategies.

Methods: Observational, exploratory, correlational, and descriptive study about mouth disorders of patients admitted to a hospital specializing in PC in Portugal, between November 6, 2019, and July 31, 2020. The data collection instrument was a questionnaire and the consultation of the patient's clinical file. It was obtained the previous authorization of the ethics committee and the patient's informed consent. Data were analyzed using the SPSS® software (V.26).

Results: The sample was 46, 56.52% were over 71 years old, and the male sex ratio of 63.04%. Most of the patients had an advanced oncological disease, were polymedicated, had missing teeth, and no regular hygiene habits. Xerostomia and oral candidiasis were the most identified problems. Patients with oncological diseases have more probability to suffer from mouth disorders (P = .047), compared to noncancer patients. Patients with frequent oral hygiene have fewer mouth disorders (rp = -0.304; P = .040). There is a considerable improvement in the tongue coating with an increase in oral hygiene (P = .005). Mouth care plays is important in patient comfort (n = 45; 97.83%) and nonpharmacological strategies are effective for the relief of xerostomia (n = 35; 94.59%).

Conclusions: Nonpharmacological strategies are effective in the treatment of xerostomia and tongue coating. More information to determine the effectiveness of the strategies in the treatment of mouth disorders is necessary.

Objective: Palliative care is unavailable and/or inaccessible for the majority of people in low- and middle-income countries (LMIC). This study aims to determine the availability and accessibility of palliative care services in Malaysia, a middle-income country that has made good progress toward universal health coverage (UHC).

Method: Publicly available data, and databases of registered palliative care services were obtained from governmental and nongovernmental sources. Google Maps and Rome2Rio web-based applications were used to assess geographical disparities by estimating the median distance, travel time, and travel costs from every Malaysian district to the closest palliative care service.

Results: Substantial variations in availability, components, and accessibility (distance, time, and cost to access care) of palliative care services were observed. In the highly developed Central Region of Peninsular Malaysia, specialty care was available within 4 km whereas in the less-developed East Coast of Peninsular Malaysia, patients had to travel approximately 46 km. In the predominantly rural East Malaysia, basic palliative care services were 82 km away and, in some instances, where land connectivity was scarce, it took 2.5 h to access care via boat. The corresponding median travel costs were USD2 (RM9) and USD23 (RM114) in Peninsular Malaysia and East Malaysia.

Conclusion: The stark urban-rural divide in the availability and accessibility of palliative care services even in a setting that has made good progress toward UHC highlights the urgent need for decentralization of palliative care in the LMICs. This may be achieved by capacity building and task shifting in primary care and community settings.

In a recently published paper in this journal, Covington et al explored the potential advantages of mindfulness-based interventions (MBIs) for healthcare staff burnout and associated problems. In the demanding and emotionally charged field of end-of-life (EOL) care, healthcare professionals play a pivotal role in supporting patients and their families during their most vulnerable moments. However, as a recent systematic review reveals, the empirical research on MBIs in the context of EOL care is still in its nascent stages. This correspondence contributes to the research gap on mental health and self-care of EOL for professionals.

Background: Employing non-family paid helpers has become a prevalent practice across North America, Europe, and Asia, which families adopt to alleviate the stroke care burden, allowing family to take a break from their obligations and perform other social activities. However, paid helpers' experiences of providing palliative care to stroke patients are under-explored. This study aimed to explore the caregiving experiences of non-family paid helpers providing palliative care to stroke patients. Method: A qualitative descriptive study was undertaken using purposive sampling and semi-structured individual in-depth interviews. Thematic analysis was used for data analysis. Results: Seventeen participants (mean age: 51.23 years) were included, predominantly being female (88%), and their caregiving experiences with patients ranged from four to 26 years. Participants shared that monetary compensation offset the exhaustion, familial and health sacrifices of palliative caregiving. They emphasized emotional self-management through accepting and coping or avoiding and distancing, and appreciated rewarding appraisals from stroke patients and family members. They also expressed a lack of recognition from the public, being invisible to the healthcare system/professionals, and insecurity in employment rights. Conclusions: Findings support the need for governmental initiatives to subsidize families in employing helpers to provide palliative care. Helpers perceived monetary compensation and a reciprocal caregiving relationship as the primary motives for providing care. Public recognition of this role as a helper in caregiving, contractual employment rights, and being recognized by the healthcare system and healthcare professionals are considerations in promoting quality care and alleviating a health care burden. The findings may contribute to further understanding of the experiences of non-family paid helpers in a job lacking recognition when delivering palliative care in a hospital for stroke patients. Evidence-based interventions that enhance reciprocity and recognition should be considered as part of the global initiatives to support paid helpers in palliative care.

Objective: Living the final days of life being cared for at home is a preference expressed by many. The data on the effectiveness of home-based end-of-life care (EoLC) intervention to improve the holistic conditions of terminally ill patients are scanty. This study sought to evaluate a psychosocial home-based EoLC intervention for terminally ill patients in Hong Kong.

Methods: A prospective cohort study was conducted, applying the Integrated Palliative Care Outcome Scale (IPOS) at 3 timepoints (service intake, 1-month, and 3-months after enrollment). A total of 485 eligible, consenting terminally ill people (mean age = 75.48, SD = 11.39) were enrolled, with 40.21% (n = 195) providing data at all 3 timepoints for this study.

Results: Decreasing symptom severity scores were observed for all IPOS psychosocial symptoms, and most physical symptoms, over the 3 timepoints. Improvements in depression and practical concerns had the highest omnibus time effects (F > 31.92, P < .01) and T₀ to T₂ paired comparison effects (Cohen's d > 0.54, P < .01). Physical symptoms of weakness/lack of energy, poor mobility, and poor appetite also showed significant improvements at T₁ and T₂ (Cohen's d: 0.22-0.46, P < .05). Bivariate regression analyses showed that improvements in anxiety, depression, and family anxiety were associated with improvements in physical symptoms of pain, shortness of breath, weakness/lack of energy, nausea, poor appetite, and poor mobility. Patients' demographic and clinical characteristics were not associated with changes in symptoms.

Conclusions: The psychosocial home-based EoLC intervention effectively improved the psychosocial and physical status of terminally ill patients, irrespective of their clinical characteristics or demographics.

As space exploration becomes increasingly common, palliative care for astronauts will require greater consideration. All aspects of palliative care need to be specifically adapted for astronauts. For example, addressing additional circumstances such as inability to see loved ones from Earth will be an important part of meeting their psychological and spiritual needs. A different approach to pharmacological management of end-of-life symptoms is also warranted due to changes in human physiology and pharmacokinetics in space.

Objective: The aims of the current study are to assess the prevalence of cancer-related fatigue, to examine the difference in cancer-related fatigue severity in relation to patients' characteristics (age, gender, type of cancer, and palliative performance status), and to explore the correlation between cancer-related fatigue and pain, dyspnea, insomnia, and depression among palliative care patients. Methods: A cross-sectional descriptive observational study conducted at Comprehensive Cancer Center, King Fahad Medical City, Riyadh, Saudi Arabia. The study included cancer patients who received palliative care services from January 2016 to December 2021. Clinical data of study participants were retrospectively collected from Palliative Care department patient registry. Symptoms were assessed and scored using Edmonton Symptom Assessment Scale. Data analysis was performed using SPSS statistical software. Results: A total of 2616 patients were included in the study, 52.3% were females and 47.7% were males. The median age of study participants was 56 years (range: 2-101 years). Among all study population, the highest reported cancer type was gastrointestinal malignancy (33.5%), while the least was unknown primary malignancy (1.4%). With regards to Edmonton Symptom Assessment Scale, pain (86.4%) and fatigue (83%) were the highest reported symptom in comparison to constipation (17.3%) and insomnia (7.1%). Conclusion: Cancer-related fatigue is a prevalent and concerning issue among palliative care patients. It is essential that healthcare providers recognize the prevalence of fatigue among patients with life-limiting illnesses, assess patients for fatigue routinely, incorporate strategies for managing fatigue, work closely with affected individuals and their families in order to guide the establishment of a personalized care plan that addresses the patient's unique needs and preferences.

Objective: Dignity therapy is a short-term psychotherapy used to help patients at end of life through addressing distress and enhancing dignity. The objective of this study was to assess the effectiveness and feasibility of introducing dignity therapy into a hospital-based cancer care service. Methods: A feasibility study was undertaken using a randomised controlled trial design. Participants were adult patients receiving systemic treatment for cancer or haematological malignancy with palliative intent, within an Australian ambulatory cancer treatment centre. Outcomes of interest were patient distress levels and feasibility of intervention delivery. Participants completed two self-reported distress scales at recruitment and four weeks following (control group) or one month after intervention delivery (intervention group). Patients receiving the intervention also completed the dignity therapy patient feedback questionnaire. Feasibility was measured by collecting data on time required to implement the intervention with subsequent crude cost estimates calculated. Study procedures are reported according to CONSORT guidance. Results: Fifteen patients were recruited for the study. Participants in the intervention group reported small but significantly different lower distress scores than those in the control group at 4 weeks. The time taken to deliver the intervention ranged from 5.5 to 11 h with subsequent cost dependent on the remuneration of the dignity therapy therapist. Conclusions: Findings support other studies on the benefit to patients from delivering a dignity therapy intervention at end of life. Feasibility is influenced by multidisciplinary team support, resource availability and the designated therapist delivering the intervention. Larger sample sizes are needed to ascertain effect.

Introduction: A 65-year-old female patient could no longer take oral food or medications due to a duodenal occlusion associated with metastatic urothelial carcinoma. Her pre-existing chemotherapy-induced polyneuropathy had been well treated with pregabalin orally.

Methods: Since only preparations for oral use of pregabalin are available, pregabalin suppositories were compounded by the hospital pharmacy for rectal use in this patient.

Results: With the rectal administration, the treatment was successfully continued; we measured a good increase in serum levels and the symptoms improved significantly.

Discussion: Cancer patients often need to be treated with co-analgesics. At the end of life, treatment often cannot be continued due to lack of other than oral administration. Our case adds to the low evidence of pregabalin administered rectally.