METHODS: This was a cross-sectional, single-centre study conducted via questionnaire. Patients aged 18 years old and above, who were diagnosed with non-curable pulmonary hypertension were recruited and given the assessment tool - perceptions of palliative care instrument electronically. The severity of pulmonary hypertension was measured using WHO class, N-terminal pro B-type natriuretic peptide and the 6-minute walking test distance.
RESULTS: A total of 84 patients [mean age: 35 ±11 years, female: 83.3%, median N-terminal pro B-type natriuretic peptide: 491 pg/ml (interquartile range: 155,1317.8), median 6-minute walking test distance: 420m (interquartile range: 368.5, 480m)] completed the questionnaires. Patients with a higher WHO functional class and negative feelings (r = 0.333, p = 0.004), and cognitive reaction to palliative care: hopeless (r = 0.340, p = 0.003), supported (r = 0.258, p = 0.028), disrupted (r = 0.262, p = 0.025), and perception of burden (r = 0.239, p = 0.041) are more receptive to palliative care. WHO class, N-terminal pro B-type natriuretic peptide, and 6-minute walking test distance were not associated with higher readiness for palliative care. In logistic regression analyses, patients with positive feelings (β = 2.240, p = < 0.05), and practical needs (β = 1.346, p = < 0.05), were more receptive to palliative care.
CONCLUSIONS: Disease severity did not directly influence patients' readiness for palliative care. Patients with a positive outlook were more receptive to palliative care.
MATERIALS AND METHODS: This is a retrospective study of patients with chronic refractory breathlessness and Modified Medical Research Council (mMRC) dyspnoea scale grade ≥ 2 who attended the BST clinic over 1 year period. BST consists of two clinic sessions 2 weeks apart. Data was retrieved from patients' medical notes and analysis done using Microsoft Excel.
RESULTS: A total of 21 patients were identified. Median age was 69 years with 52% of females. 72% had non-malignant diagnoses. Median Charlson's Comorbidity Index score was 6.5. Median mMRC dyspnoea scale was 3. 47.6% had long term oxygen usage. Median Australian Karnofsky Performance Scale (AKPS) was 65 and the median baseline breathlessness visual analogue scale (VAS) was 2. 62% completed two sessions, the remaining 38% completed only one session. Mean time from BST intervention to death was 18.26 weeks, median was 22 weeks. 72% died at home, whilst 28% died in the hospital. All the patients scored 4 (somewhat agree) and 5 (strongly agree) on the overall feedback score.
CONCLUSIONS: Development of a breathlessness intervention service is feasible in a resource limited setting and generally accepted by most patients. More research and prospective studies are needed to evaluate the effectiveness of BST in the future.
MATERIALS AND METHODS: A cross-sectional study involving bereaved individuals in Palliative Care Unit Hospital Selayang. Participants (n=175) were recruited through telephone, and a validated tool Prolonged Grief Disorder Scale (PG-13) was asked to identify PGD. Further data collected were concomitant stressors in life and support system in the bereaved individual.
RESULTS: Prevalence of PGD was 2.9% (n=5), and subthreshold PGD was 4% (n=7). A model of multiple logistic regression calculated most of the traditional risk factors were not significant except having an increased responsibility as a single parent after passing of a spouse or loved one, had 10 times increased odds of PGD (Odds Ratios: 10.93; 95% Confidence Interval: 2.937, 40.661). Otherwise, immediate family support (80%), religion (60%) and community (40%) support were the top three coping mechanisms of our PGD cohort, although they were not significant in a multiple logistic regression model.
CONCLUSION: Our PGD percentage may not be as high as those of other countries, but nonetheless they exist and their needs are just as important. The authors hope that this paper may create an awareness among the healthcare clinicians about PGD in our society, for a greater access of service to understand them and better public awareness.
MATERIALS AND METHODS: An online survey coupled with manual follow up was conducted throughout all MOH hospitals in Malaysia. Data collected described elements of the palliative care service(PCS) based on the WHO public health model. Data was computed using a novel matrix to determine three key indices which were the 1) palliative care development score (PCDS), 2)essential medications availability score (EMAS) and 3) opioid availability score (OAS). These scores then allowed mapping of PCS according to scores of 1-4 (1=least developed, 4=most developed).
FINDINGS: Out of all 140 MOH hospitals 88.6% (124) completed the PCDS survey, 120(85.7%) for the EMAS survey and 140 (100%) for the OAS survey. A total of 32(25.8%) hospitals had formal PCS with 8(25%) having resident palliative physicians (RPP), 8(25%) visiting palliative physicians(VPP) and 16(50%) no palliative physician (NPP). Out of these services, 17 (53%) had dedicated palliative care beds. In the PCDS survey, hospitals with PCS had significantly higher mean PCDS of 2.59 compared to 1.02 for non-PCS hospitals (P<0.001). The EMAS survey showed 109(90.8%) hospitals had EMAS of four and the OAS survey showed that 135(96.4%) hospitals had oral morphine available.
CONCLUSION: This study shows that palliative care service development in MOH hospitals is still very limited however, majority of MOH hospitals in Malaysia have all the essential medications and oral morphine available.
BACKGROUND: On a global scale, with the increase of aging, the number of people in need of palliative care has increased significantly, which has a huge impact on the professional pressure of palliative nurses. Existing literature focuses on examining palliative care from the perspective of patients, but palliative nurses also face the threats to physical and mental health caused by job burnout.
EVALUATION: A systematic literature search has been carried out in the following databases as of October 2021:PubMed, EMBASE, CINAHL, Web of Science, and Scopus. The Cochrane Library and Joanna Briggs Institute Library were also searched to confirm if there are any available systematic reviews on the subject. Manually searched the reference list of included papers.
KEY ISSUES: Seventeen studies were included in this review. Five key issues in the palliative care nurse's experience: (1) psychological harm, (2) physical symptoms, (3) negative emotions, (4) Burnout caused by communication barriers, and (5) Lack of experience. Two key issues in the needs of palliative care nurses: (1) social support, and (2) training and education.
CONCLUSION: The pressure of facing death for a long time and controlling the symptoms of patients has a very important impact on the mental and physical health of palliative nurses. Nursing staff have needed to be satisfied, and it is essential to provide support and help relieve the pressure on palliative nurses.
DESIGN: Prospective case series, Proof of concept pilot study.
SETTING: Tertiary Health Care Center, Hospital Tuanku Jaafar, Seremban, Malaysia. Department of Surgery.
PARTICIPANTS: A total of 17 patients diagnosed with advanced COJ tumour and who had never undergone any surgical, endoscopic, or chemoradiotherapy and indicated for stenting were recruited.
INTERVENTIONS: The study period was over nine months, and follow-up was one-month post-stenting.
MAIN OUTCOME MEASURES: Endpoint measures were feasibility of deployment of the new design, symptoms relief, early stent migration, early complication, GERD Q score, and (QOL)assessment.
RESULTS: The ART stent was inserted successfully in all cases (17/17, 100%). There were two stent migrations due to the flexibility of the stent at the neck. There were no early or post-stenting one-month complications associated with the procedure. A good flow of contrast was seen in all the stents deployed. GERD Q score was low in all patients pre and post-stenting. Post-stenting there was a relief of dysphagia, weight gain, and a 60% improvement in QOL score.
CONCLUSIONS: ART stent is feasible and technically successful in COJ tumours. It provides good symptom relief, improves the QOL, and has minimal early complications.
FUNDING: None declared.
OBJECTIVES: The objective of our study was to determine the efficacy of a single session of 20 min mindful breathing in alleviating multiple symptoms in palliative care.
METHODS: Adult palliative care in patients with at least one symptom scoring ≥5/10 based on the Edmonton Symptom Assessment Scale (ESAS) were recruited from September 2018 to December 2018. Recruited patients were randomly assigned to either 20 min mindful breathing and standard care or standard care alone.
RESULTS: Forty patients were randomly assigned to standard care plus a 20 min mindful breathing session (n=20) or standard care alone (n=20). There was statistically significant reduction of total ESAS score in the mindful breathing group compared with the control group at minute 20 (U=98, n 1 = n 2 = 20, mean rank 1 = 15.4, mean rank 2 = 25.6, median reduction 1 = 6.5, median reduction 2 = 1.5, z=-2.763, r=0.3, p=0.005).
CONCLUSION: Our results provided evidence that a single session of 20 min mindful breathing was effective in reducing multiple symptoms rapidly for palliative care patients.
METHODS: We conducted a parallel-group, blinded, randomized controlled study at the University of Malaya Medical Centre (UMMC), Malaysia from February 2019 to April 2019. Sixty adult palliative care patients with an overall suffering score of 4/10 or above based on the Suffering Pictogram were recruited and randomly assigned to either the 5-min mindfulness of love group (N = 30) or the 5-min supportive listening group (N = 30).
RESULTS: There were statistically significant improvements in the overall suffering score (mean difference = -2.9, CI = -3.7 to -2.1, t = -7.268, p = 0.000) and the total FACIT-Sp-12 score (mean difference = 2.9, CI = 1.5 to 4.3, t = 4.124, p = 0.000) in the intervention group compared to the control group.
CONCLUSION: The results provided evidence that 5-min mindfulness of love could affect the actual state of suffering and the spiritual quality of life of palliative care patients.
AIM: To evaluate the preparedness and capacity of hospice and palliative care services in the Asia-Pacific region to respond to the COVID-19 pandemic.
METHOD: An online cross-sectional survey was developed based on methodology guidance. Asia-Pacific Hospice and Palliative Care Network subscribers (n = 1551) and organizational members (n = 185) were emailed. Descriptive analysis was undertaken.
RESULTS: Ninety-seven respondents completed the survey. Around half of services were hospital-based (n = 47, 48%), and public-funded (n = 46, 47%). Half of services reported to have confirmed cases (n = 47, 49%) and the majority of the confirmed cases were patients (n = 28, 61%). Staff perceived moderate risk of being infected by COVID-19 (median: 7/10). > 85% of respondents reported they had up-to-date contact list for staff and patients, one-third revealed challenges to keep record of relatives who visited the services (n = 30, 31%), and of patients visited in communities (n = 29, 30%). Majority of services (60%) obtained adequate resources for infection control except face mask. More than half had no guidance on Do Not Resuscitate orders (n = 59, 66%) or on bereavement care for family members (n = 44, 51%).
CONCLUSION: Recommendations to strengthen the preparedness of palliative care services include: 1) improving the access to face mask; 2) acquiring stress management protocols for staff when unavailable; 3) reinforcing the contact tracing system for relatives and visits in the community and 4) developing guidance on patient and family care during patient's dying trajectory.
METHODS: We first reviewed the literature on the major types, severity, prevalence, and duration of suffering associated with cervical cancer. We then conducted a modified Delphi process with experts in cervical cancer care to supplement the literature. For each type of suffering, we distinguished between decedents (those who die from cervical cancer in a given year) and nondecedents (those who have cervical cancer in a given year but do not die). By applying the suffering prevalence and duration estimates to the number of decedents, nondecedents, and family caregivers in 2017, we were able to estimate their palliative care needs and the intensity of palliative care needed to respond adequately to this suffering.
RESULTS: There is a high prevalence among decedents of moderate or severe pain (84%), vaginal discharge (66%), vaginal bleeding (61%), and loss of faith (31%). Among both decedents and nondecedents, there is a high prevalence of clinically significant anxiety (63% and 50%, respectively), depressed mood (52% and 38%, respectively), and sexual dysfunction (87% and 83%, respectively). Moderate or severe financial distress is prevalent among decedents, nondecedents, and family caregivers (84%, 74%, and 66%, respectively). More than 40% of decedents and nondecedents are abandoned by their intimate partners. Most patients experience some combination of moderate or severe physical, psychological, social, and spiritual suffering. In total, 258,649 decedents and 2,558,857 nondecedents needed palliative care in 2017, approximately 85% of whom were in low- and middle-income countries where palliative care is rarely accessible.
CONCLUSION: Among women with advanced cervical cancer, suffering is highly prevalent and often severe and multifaceted.
METHOD: Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed.
RESULTS: Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness.
SIGNIFICANCE OF RESULTS: To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.