Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient-centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision-making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end-of-life care.
Although suffering in palliative care has received increasing attention over the past decade, the psychological processes that underpin suffering remain relatively unexplored.
Objective: To understand the psychological processes involved in the experiencing of suffering at the end phase of life.
Methods: Semistructured interviews were conducted with 20 palliative care inpatients from an academic medical centre in Kuala Lumpur, Malaysia. The transcripts were thematically analysed with NVIVO9.
Results: 5 themes of psychological processes of suffering were generated: (1) perceptions, (2) cognitive appraisals, (3) hope and the struggles with acceptance, (4) emotions and (5) clinging. A model of suffering formation was constructed.
Conclusion: The findings may inform the development of mechanism-based interventions in the palliation of suffering.
Background: Pain remains one of the most common and debilitating symptoms of advanced cancer. To date, there is a lack of studies on pain and its treatment among Malaysian palliative care patients.
Objective: This study aimed to explore the prevalence of pain and its treatment outcomes among adult cancer patients admitted to a palliative care unit in Sabah, Malaysia.
Methods: Of 327 patients screened (01/09/15-31/12/17), 151 patients with assessed self-reported pain scores based on the numerical rating scale of 0-10 (current, worst and least pain within the past 24 hours) upon admission (baseline), 24, 48 and 72 hours post-admission and discharge were included. Pain severity and pain score reductions were analysed among those who experienced pain upon admission or in the past 24 hours. Treatment adequacy was measured by the Pain Management Index (PMI) among discharged patients. The PMI was constructed upon worst scores categorised as 0 (no pain), 1 (1-4, mild pain), 2 (5-6, moderate pain), or 3 (7-10, severe pain) which is then subtracted from the most potent level of prescribed analgesic drug scored as 0 (no analgesia), 1 (non-opioid), 2 (weak opioid) or 3 (strong opioid). PMI =0 indicated adequate treatment.
Results: Upon admission, 61.1% [95%CI 0.54:0.69] of 151 patients presented with pain. Of 123 patients who experienced pain upon admission or in the past 24 hours, 82.1% had moderate to severe worst pain. Throughout patients' ward stay until discharge, there was an increased prescribing of analgesics and adjuvants compared to baseline, excluding weak opioids, with strong opioids as the mainstay treatment. For all pain score types (current, worst and least pain within the past 24 hours), means decreased at each time point (24, 48 and 72 hours post-admission and discharge) from baseline, with a significant decrease at 24 hours post-admission (p<0.001). Upon discharge (n=100), treatment adequacy significantly improved (PMI=0 100% versus 68% upon admission, p<0.001).
Conclusions: Accounting for pain's dynamic nature, there was a high prevalence of pain among cancer patients in the palliative care unit. Continuous efforts incorporating comprehensive pain assessments, evidence-based treatments and patient education are necessary to provide adequate pain relief and end-of-life comfort care.
BACKGROUND: The population of end-stage renal failure (ESRF) receiving dialysis treatment is increasing worldwide. For most patients with ESRF, dialysis can extend their life. However, treatment can be demanding and time-consuming. Despite dialysis treatment, many patients continue to experience various sufferings.
METHODS: A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering of ESRF patients on maintenance dialysis in Malaysia. The results were thematically analyzed.
RESULTS: Nineteen ESRF patients were interviewed. The themes and subthemes were: (I) physical suffering-physical symptoms and functional limitations, (II) psychological suffering-the emotions and thoughts of suffering, (III) social suffering-healthcare-related suffering and burdening of others and (IV) spiritual suffering-the queries of suffering.
CONCLUSIONS: These findings may help healthcare professionals to fill in the gaps in the delivery of best renal palliative care.
Objective: The objective of this study was to estimate palliative care needs and to describe the cohort of children with life-limiting illnesses (LLI) dying in hospitals.
Design: This study was a retrospective cohort study. The national hospital admissions database was reviewed and children who had died who had life-limiting illnesses were identified.
Setting: This study was conducted at Ministry of Health hospitals, Malaysia.
Patients: Children aged 18 years and below who had died between January 1, 2012 and December 31, 2014.
Main Outcome Measures: Life-limiting diagnoses based on Hain et al.'s directory of LLI or the ACT/RCPCH categories of life-limiting disease trajectories.
Results: There were 8907 deaths and 3958 (44.4%) were that of children with LLI. The majority, 2531 (63.9%) of children with LLI were neonates, and the most common diagnosis was extreme prematurity <28 weeks with 676 children (26.7%). For the nonneonatal age group, the median age at admission was 42 months (1-216 months). A majority, 456 (32.0%) had diagnoses from the ICD-10 chapter "Neoplasms" followed by 360 (25.3%) who had a diagnoses from "Congenital malformations, deformations, and chromosomal abnormalities" and 139 (9.7%) with diagnoses from "Disease of the nervous system." While a majority of the terminal admissions were to the general ward, there were children from the nonneonatal age group, 202 (14.2%) who died in nonpediatric wards.
Conclusion: Understanding the characteristics of children with LLI who die in hospitals could contribute toward a more efficient pediatric palliative care (PPC) service development. PPC service should include perinatal and neonatal palliative care. Palliative care education needs to extend to nonpediatric healthcare providers who also have to manage children with LLI.
This study explored health-care workers' perception of patients' suicide intention and their understanding of factors leading to particular interpretations. Semistructured face-to-face in-depth interviews were conducted with 32 health-care workers from a general hospital in Klang Valley, Malaysia. Interview data were transcribed verbatim and analyzed using the interpretative phenomenological analysis. The health-care workers were found to have four types of perceptions: to end life, not to end life, ambivalence about intention, and an evolving understanding of intention. Factors leading to their perceptions of patients' suicide intention were patient demographics, health status, severity of ideation/attempt, suicide method, history of treatment, moral character, communication of suicide intention, affective/cognitive status, availability of social support, and health-care workers' limited knowledge of patients' condition/situation. Insufficient knowledge and negative attitudes toward suicidal patients led to risk minimization and empathic failure, although most health-care workers used the correct parameters in determining suicide intention.
Aim: The majority of caregivers for stroke patients in Malaysia are informal caregivers, although there are no valid tools to measure their knowledge regarding caregiving. Therefore, this study validated the Caregiving Knowledge Questionnaire (CKQ-My) as an assessment of Malaysian stroke caregivers' knowledge regarding patient positioning and feeding.
Methods: Back-to-back translation was used to produce a bilingual version of the questionnaire. Hand drawings were used to replace photographs from the original questionnaire. Face validity and content validity were assessed, and construct validity was determined by comparing responses from informal caregivers, medical students, and primary care doctors. Finally, the internal consistencies of the subscales were determined.
Results: Pretesting showed that the translated version was sufficiently easy to understand. Internal consistency for the positioning subscale (28 items, Cronbach's a = 0.70) and feeding subscale (15 items, Cronbach's a = 0.70) was good. Mean scores for the positioning subscale for caregivers (mean: 17.1 ± 3.9), medical students (mean: 18.9 ± 3.1), and doctors (mean 21.5 ± 2.2) were significantly different (F = 5.28, P ' = 0.011). Mean scores for the feeding subscale for caregivers (mean 13.1 ± 2.5), medical students (mean 16.1 ± 1.9), and doctors (mean 16.1 ± 2.4) also differed significantly (F = 6.217, P = 0.006).
Conclusions: CKQ-My has good internal consistency and construct validity for the subscales measuring stroke caregivers' knowledge about positioning and feeding of stroke patients. It has potential as an assessment of effectiveness of caregiver training and for future studies on long-term stroke outcomes in Malaysia.
AIM: To examine the factors associated with nurses' perceptions of the quality of end-of-life care.
BACKGROUND: With increasing demand for hospitals to provide end-of-life care, the low quality of palliative care provided in hospital settings is an issue of growing concern in developing countries. Most dying patients receive their care from general nurses, irrespective of the nurses' specialty or level of training.
METHOD: A structured cross-sectional questionnaire survey was conducted of 553 nurses working at a teaching hospital in Malaysia.
RESULTS: The mean scores for nurses' knowledge about end-of-life care, their attitudes towards end-of-life care and the perceived quality of end-of-life care were low. The factors identified as significantly associated with the quality of end-of-life care were nurses' levels of knowledge and their attitudes towards end-of-life care.
DISCUSSION: Factors that contributed to the low quality of end-of-life care were inadequate knowledge and negative attitudes. These findings may reflect that end-of-life care education is not well integrated into nursing education.
CONCLUSION: The findings of this study suggest that there is a need to increase the nurses' level of knowledge and improve their attitude towards end-of-life care in order to enhance the quality of care provided to dying patients.
IMPLICATIONS FOR NURSING AND HEALTH POLICY: Nurse managers and hospital policymakers should develop strategies to enhance nurses' level of knowledge, as well as providing adequate emotional support for nurses who care for dying patients and their families. Nurses should be proactive in increasing their knowledge and adopting more positive attitudes towards end-of-life care.
AIMS AND OBJECTIVES: This study aimed to examine nurses' perceptions of barriers to and facilitators of end of life care, as well as their association with the quality of end of life care.
BACKGROUND: Often, dying patients and their families receive their care from general nurses. The quality of end of life care in hospital wards is inadequate.
METHOD: A self-administered questionnaire was completed by 553 nurses working in a tertiary teaching hospital in Malaysia.
RESULTS: The barrier with the highest mean score was "dealing with distressed family members". The facilitator with the highest mean score was "providing a peaceful and dignified bedside scene for the family once the patient has died". With regard to barrier and facilitator categories, the barrier category with the highest total mean score was patient-related barriers and the facilitator category with the highest total mean score concerned facilitators related to health care professionals. In the multivariate analysis, age, patient family-related barriers and health care professional-related facilitators significantly predict the quality of end of life care.
CONCLUSION: The results of this study suggest that there is an urgent need to overcome barriers related to the patient and family members that hinder the quality of care provided for dying patients, as well as to enhance and implement the facilitators related to health care providers. In addition, there is also a need to enhance the quality of end of life care provided by younger nurses through end of life care courses and training. This article is protected by copyright. All rights reserved.
In Malaysia, Mei Ling Look, Siti Amirah Saharudin and Alireza Behzadnia conducted an interview-based study to elicit the most important concerns of patients nearing the end of life and receiving palliative care from family members.
En Malaisie, une des mesures prises pour améliorer les soins fournis aux patients cancéreux est d'intégrer des pharmaciens dans l'équipe soignante au niveau local. Les auteurs ont interviewé des professionnels de santé travaillant en cancérologie concernant leur volonté à intégrer les pharmaciens dans leur équipe.
Cette étude vise à explorer les connaissances et la pratique des soignants et leurs freins à transférer leurs patients en soins palliatifs avant le développement d'un service national malaisien. Les résultats montrent qu'il y a un manque de connaissances et de compréhension des soins palliatifs parmi les soignants. Se centrer sur la formation et les politiques de soutien sera nécessaire pour développer un service national en Malaisie.