Percutaneous endoscopic gastrostomy using the introducer method with ultra-slim endoscopy in amyotrophic lateral sclerosis patients with respiratory compromise: A safe technique.

BACKGROUND AND AIM: Percutaneous endoscopic gastrostomy (PEG) placement is recommended in patients with amyotrophic lateral sclerosis (ALS), but the procedure is considered high risk. In this study, we aimed to compare the outcome of ALS patients with and without PEG. The success of the procedure and complications of PEG insertion were also explored. METHODS: Patients with ALS who met the criteria for enteral feeding support were consecutively recruited. Patients who consented had PEG insertion using the modified technique of introducer method with transoral ultra-slim endoscopy. RESULTS: A total of 64 patients were recruited, of which 36 (56%) patients consented to PEG. The median age of all patients was 65 years and 59% were male. There was no difference in demographic and clinical characteristics between patients who agreed to a PEG and those who did not. The mortality rate at 6 and 12 months was lower in the PEG cohort compared with non-PEG, but this was not statistically significant (6 months: 28.6% vs 32.2%, P = 0.561; 12 months: 38.9% vs 50.0%, P = 0.374). Amongst the PEG cohort, 61% were stratified high risk and 31% moderate risk. Thirty-one percent of them required long-term home noninvasive ventilation. All patients (100%) underwent successful PEG insertion at single attempt using the modified approach. The complications reported over a period of 6 months were infected PEG site (17%), dislodged gastrostomy tube (14%), and minor bleeding (8%). CONCLUSION: In ALS patients with moderate to high risk of PEG insertion, the introducer technique utilizing ultra-slim endoscopy guidance was well tolerated and safe.

Happiness at the end of life: A qualitative study.

OBJECTIVE: Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. 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.

The effect of 5-min mindfulness of love on suffering and spiritual quality of life of palliative care patients: A randomized controlled study.

OBJECTIVE: Suffering is a common experience in palliative care. In our study, we aimed to determine the effect of 5-min mindfulness of love on suffering and the spiritual quality of life of 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.

Dermatological Issues Among Individuals Receiving Palliative Care - A Review.

Skin disorders among individuals receiving palliative care may be associated with the primary condition or underlying comorbidities and patients may experience pruritus, discomfort or pain. Common conditions include xerosis, pressure ulcers, intertrigo, superficial fungal infections, telogen effluvium, pruritus, herpes zoster, eczematous disorders and edema. During end-of-life care, there is reduced skin perfusion and metabolism hence leading to susceptibility to infection, pressure and injury. Other factors affecting the skin include limited mobility, nutritional deficits and immunosuppression. Although treatment strategies for each skin condition are usually aligned with standard protocols, considerations among these patients include limited life-expectancies, potential treatment burden, drug-drug interactions as well as comfort-directed rather than cure-directed therapy. For patients with xerosis cutis, the regular use of moisturisers is recommended. The management and prevention of pressure ulcers include the strategies of skin assessment and care, pressure redistribution, nutrition and hydration and ulcer care. Superficial fungal infections require treatment with appropriate topical and/or systemic antifungals while antivirals and adjunctive treatment can be prescribed for herpes zoster. Treatment and symptom control of skin disorders in this population can improve quality of life and patients' comfort level.

Mindful gratitude journaling: psychological distress, quality of life and suffering in advanced cancer: a randomised controlled trial.

CONTEXT: Numerous studies have shown that gratitude can reduce stress and improve quality of life. OBJECTIVE: Our study aimed to examine the effect of mindful gratitude journaling on suffering, psychological distress and quality of life of patients with advanced cancer. METHODS: We conducted a parallel-group, blinded, randomised controlled trial at the University of Malaya Medical Centre, Malaysia. Ninety-two adult patients with advanced cancer, and an overall suffering score ≥4/10 based on the Suffering Pictogram were recruited and randomly assigned to either a mindful gratitude journaling group (N=49) or a routine journaling group (N=43). RESULTS: After 1 week, there were significant reductions in the overall suffering score from the baseline in both the intervention group (mean difference in overall suffering score=-2.0, 95% CI=-2.7 to -1.4, t=-6.125, p=0.000) and the control group (mean difference in overall suffering score=-1.6, 95% CI=-2.3 to -0.8, t=-4.106, p=0.037). There were also significant improvements in the total Hospital Anxiety and Depression Scale score (mean difference=-3.4, 95% CI=-5.3 to -1.5, t=-3.525, p=0.000) and the total Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being score (mean difference=7.3, 95% CI=1.5 to 13.1, t=2.460, p=0.014) in the intervention group after 7 days, but not in the control group. CONCLUSION: The results provide evidence that 7 days of mindful gratitude journaling could positively affect the state of suffering, psychological distress and quality of life of patients with advanced cancer. TRIAL REGISTRATION NUMBER: The trial was registered with the Australian and New Zealand Clinical Trials Registry (ACTRN1261800172191) and conducted in accordance with the Declaration of Helsinki.

Mindfulness-based supportive therapy on reducing suffering in patients with advanced cancer: randomised controlled trial.

OBJECTIVES: Suffering is common among patients with advanced cancer. The practice of mindfulness during patient care can potentially reduce suffering. We aimed to examine the efficacy of mindfulness-based supportive therapy (MBST) on reducing suffering in patients with advanced cancer. METHODS: We conducted a parallel-group, single-blinded, randomised controlled trial at the University of Malaya Medical Centre, Malaysia. Seventy-three patients with advanced cancer with an overall suffering score ≥4/10 based on the Suffering Pictogram were recruited and randomly assigned into either the MBST group (n=34) or the control group (n=39). RESULTS: There was a statistically significant reduction in the overall suffering score in the MBST group compared with the control group (U=432.5, median1=-2.0, median2=-1.0, z=-2.645, p=0.008). There was also significant improvement in the total Hospital Anxiety and Depression Scale score (U=483.5, median1=-4.0, median2=-3.0, z=-1.994, p=0.046), and the total Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being score (U=252.0, median1=+14.5, median2=+5.0, z=-4.549, p=0.000) in the MBST group compared with the control group. CONCLUSIONS: The results provided evidence that the practice of MBST during patient care could promote positive psychosocial outcomes.

COVID-19, Suffering and Palliative Care: A Review.

According to the WHO guideline, palliative care is an integral component of COVID-19 management. The relief of physical symptoms and the provision of psychosocial support should be practiced by all healthcare workers caring for COVID-19 patients. In this review, we aim to provide a simple outline on COVID-19, suffering in COVID-19, and the role of palliative care in COVID-19. We also introduce 3 principles of palliative care that can serve as a guide for all healthcare workers caring for COVID-19 patients, which are (1) good symptom control, (2) open and sensitive communication, and (3) caring for the whole team. The pandemic has brought immense suffering, fear and death to people everywhere. The knowledge, skills and experiences from palliative care could be used to relieve the suffering of COVID-19 patients.

A model incorporating ultrasound to predict the probability of fast disease progression in amyotrophic lateral sclerosis.

OBJECTIVE: We aimed to develop a model to predict amyotrophic lateral sclerosis (ALS) disease progression based on clinical and neuromuscular ultrasound (NMUS) parameters. METHODS: ALS patients were prospectively recruited. Muscle fasciculation (≥2 over 30-seconds, examined in biceps brachii-brachialis (BB), brachioradialis, tibialis anterior and vastus medialis) and nerve cross-sectional area (CSA) (median, ulnar, tibial, fibular nerve) were evaluated through NMUS. Ultrasound parameters were correlated with clinical data, including revised ALS Functional Rating Scale (ALSFRS-R) progression at one year. A predictive model was constructed to differentiate fast progressors (ALSFRS-R decline ≥ 1/month) from non-fast progressors. RESULTS: 40 ALS patients were recruited. Three parameters emerged as strong predictors of fast progressors: (i) ALSFRS-R slope at time of NMUS (p = 0.041), (ii) BB fasciculation count (p = 0.027) and (iii) proximal to distal median nerve CSA ratio < 1.22 (p = 0.026). A predictive model (scores 0-5) was built with excellent discrimination (area under curve: 0.915). Using a score of ≥ 3, the model demonstrated good sensitivity (81.3%) and specificity (91.0%) in differentiating fast from non-fast progressors. CONCLUSION: The current model is simple and can predict the probability of fast disease progression. SIGNIFICANCE: This model has potential as a surrogate biomarker of ALS disease progression.

The utility of ALS staging systems in a multi-ethnic patient cohort.

Objective: To compare two ALS staging systems, King's clinical staging and Milano-Torino (MiToS) functional staging, using prospective data from a multi-ethnic cohort of ALS patients. Methods: The stages of disease were determined prospectively based on existing definitions. The two systems were compared for timing of stages using box plots, correspondence using chi-square tests and association using Spearman's rank correlation. Results: The distribution of stages differed between the two systems. The proportions of disease stages of the King's staging system were more evenly distributed whereas in MiToS, there was greater weight seen at the later stages of disease. At the early stages, patients moved consecutively in the MiToS staging system but not in the King's staging system where patients tended to skip stages to reach later stages. Both systems had good correlation (Spearman's rho = 0.869) and the King's stage 4 most frequently corresponded to MiToS stage 2. Conclusion: We found the King's staging was helpful in determining the stages of disease burden, whereas both were helpful in determining the time to functional dependence with MiToS further refining the levels of dependence.

The Effect of 5-Minute Mindfulness of Peace on Suffering and Spiritual Well-Being Among Palliative Care Patients: A Randomized Controlled Study.

BACKGROUND: Mindfulness practices may have a role in reducing suffering and improving spiritual well-being among patients with serious illness. The efficacy, feasibility and acceptability of such interventions warrant further exploration in the palliative care population. OBJECTIVE: To investigate the effect of a brief mindfulness practice, the 5-minute mindfulness of peace intervention, on suffering and spiritual well-being among palliative care patients. METHODS: A randomized controlled study was conducted on adult palliative care patients with moderate to severe levels of suffering. Participants in the intervention arm were guided through a 5-minute mindfulness of peace exercise while participants in the control arm received 5 minutes of active listening. Pre- and post-intervention suffering and spiritual well-being were measured using the Suffering Pictogram and the FACIT-Sp-12 questionnaire, respectively. RESULTS: 40 participants completed the study. 5-minute mindfulness of peace significantly reduced suffering (median = -3.00, IQR = 2.00) more than 5 minutes of active listening (median = -1.00, IQR = 1.75), U = 73.50, z = -3.48, p = 0.001, η2 = 0.31. FACIT-Sp-12 score also significantly improved in the intervention arm (median = +5.00, IQR = 2.75) compared with the control arm after 5 minutes (median = +1.00, IQR = 3.00), U = 95.50, z = -2.85, p = 0.004, η2 = 0.21. CONCLUSIONS: A brief 5-minute mindfulness of peace exercise is effective in providing immediate relief of suffering and improving spiritual well-being. It is a useful and feasible intervention among patients receiving palliative care for rapidly and momentarily reducing spiritual suffering.

Natural history and clinical features of ALS in Malaysia.

OBJECTIVE: Studies from multiethnic populations are rarely reported but do indicate differences in phenotypic presentation and survival in amyotrophic lateral sclerosis (ALS). In this study, we aimed to investigate the natural history of a cohort of ALS patients from a multiethnic population. Methods: Data from ALS patients presenting to our multidisciplinary ALS clinic were prospectively collected from January 2015 to June 2020 as part of an ongoing hospital-based patient registry. Kaplan-Meier and Cox regression model were performed to identify potential prognostic factors. Results: A total of 144 ALS patients were recruited. We estimated the crude ALS incidence as 0.53 per 100,000 for 2019 but rises to 2 per 100,000 in patients aged 60-74 years. The majority of patients were of Chinese ethnicity (59.7%), followed by Malay (24.3%), Indian (11.1%), and others (4.9%). Malaysian Indians had a significantly steeper ALSFRS-R slope at diagnosis (p = 0.040). We found a worse prognosis in patients with bulbar-onset (HR = 1.915, p = 0.019), older age (HR = 1.052, p = 0.000), and who were fast-progressors (HR = 1.274, p = 0.000). In contrast, a higher body mass index (HR = 0.921, p = 0.007) and a longer time to diagnosis (HR = 0.967, p = 0.006), noninvasive ventilation (HR = 0.820, p = 0.000) and percutaneous endoscopic gastrostomy insertion (HR = 0.823, p = 0.000) were associated with better survival. On multivariate analysis, diagnostic delay and slow disease progression were associated with better survival. Conclusions: In our cohort, diagnostic delay and a slow disease progression were significantly associated with better survival in ALS. We also found ethnic variation with Chinese preponderance and more rapid disease progression in patients of Indian descent.

The Effect of 20-Minute Mindful Breathing on the Perception of Suffering and Changes in Bispectral Index Score (BIS) in Palliative Care Informal Caregivers: A Randomized Controlled Study.

Informal caregivers are at risk of being overwhelmed by various sources of suffering while caring for their significant others. It is, therefore, important for caregivers to take care of themselves. In the self-care context, mindfulness has the potential to reduce caregiver suffering. We studied the effect of a single session of 20-minute mindful breathing on the perceived level of suffering, together with the changes in bispectral index score (BIS) among palliative care informal caregivers. This was a randomized controlled study conducted at the University of Malaya Medical Centre, Malaysia. Forty adult palliative care informal caregivers were recruited and randomly assigned to either 20-minute mindful breathing or 20-minute supportive listening. The changes in perceived suffering and BIS were measured preintervention and postintervention. The reduction in suffering score in the intervention group was significantly more than the control group at minute 20 (U = 124.0, n1 = n2 = 20, mean rank1 = 24.30, mean rank2 = 16.70, z = -2.095, P = .036). The reduction in BIS in the intervention group was also significantly greater than the control group at minute 20 (U = 19.5, n1 = n2 = 20, mean rank1 = 29.52, mean rank2 = 11.48, z = -4.900, P < .0001). Twenty minutes of mindful breathing was more efficacious than 20 minutes of supportive listening in the reduction in suffering among palliative care informal caregivers.

The Effect of 20-Minute Mindful Breathing on the Perception of Suffering and Changes in Bispectral Index Score in Palliative Care Patients: A Randomized Controlled Study.

A randomized controlled study was conducted to evaluate the efficacy of 20-minute mindful breathing in suffering reduction. Forty palliative care patients with an overall suffering score of 4 or above as measured with the Suffering Pictogram were recruited and randomly assigned to 20-minute mindful breathing or 20-minute supportive listening. There was statistically significant reduction of suffering score in both the groups. For Bispectral Index Score value, there was statistically significant difference between intervention and control. A 20-minute mindful breathing could be useful in the alleviation of suffering in palliative care.

Mindfulness: A New Paradigm of Psychosocial Care in the Palliative Care Setting in Southeast Asia.

Alleviation of suffering in palliative care needs a combination of good symptom control and psychosocial care. The capacity of mindfulness to promote psychological flexibility opens up possibilities of creating a paradigm shift that can potentially change the landscape of psychosocial care. In this review, we attempt to introduce 4 methods to establish mindfulness based on 'The Discourse on the Foundations of Mindfulness', a core text of Theravada Buddhism, followed by a brief comparison of the concepts and practices of mindfulness in different cultures and religions in Southeast Asia. Next, 2 mindfulness-based interventions specifically designed for palliative psychosocial care - mindfulness-based supportive therapy (MBST) and mini-mindfulness meditation (MMM) are introduced. We hypothesise that mindful practices, tailored to the palliative setting, can promote positive psychosocial outcomes.