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.

Hope in Palliative Care: A Thematic Analysis.

Background: Hope is a positive coping mechanism that is important at all stages of illness, more so for palliative care patients. Objective: To explore the experiences of hope of palliative care patients. Methods: A qualitative study was conducted at University of Malaya, Kuala Lumpur, Malaysia. Adult palliative care in-patients were recruited and interviewed with semi structured questions on hope. Transcripts from the interviews were thematically analyzed with qualitative data management software NVIVO. Results: 20 palliative care patients participated in the study. The themes generated from thematic analysis were (1) The notions of hope, (2) The sources and barriers of hope and (3) The contents of hope. Conclusion: Hope is an ever-present source of energy that gives people strength to carry on even in the most adverse situations. Understanding hope from the palliative care perspective may allow healthcare providers to develop strategies to better foster hope in the terminally ill.

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-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.

The experiences of suffering of end-stage renal failure patients in Malaysia: a thematic analysis.

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.

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.

The Suffering Pictogram: Measuring Suffering in Palliative Care.

BACKGROUND: Measuring suffering objectively presents a challenge because suffering is a unique and subjective experience. However, objective tools are of profound importance in the detection and management of suffering in clinical practice for optimal patient care. OBJECTIVE: The objective of the study is to assess the psychometric properties of the Suffering Pictogram, a new suffering assessment instrument on a population of palliative care patients. DESIGN AND SETTING: This is a validation study conducted at University of Malaya Medical Centre, Kuala Lumpur, Malaysia. Ninety one palliative care patients were recruited. Patients were interviewed with the Suffering Pictogram and FACIT-Sp. RESULTS: The median completion time for the Suffering Pictogram was five minutes. The Suffering Pictogram showed good internal consistency, with a Cronbach's alpha of 0.836. The total scores of the Suffering Pictogram correlated strongly and negatively with FACIT-Sp total score (Spearman's Rho = -0.625, p < 0.001). CONCLUSION: The Suffering Pictogram is a brief, reliable, and valid instrument to measure suffering in palliative care. The instrument can be used as a screening tool to detect suffering directly.

Clinical Impact of Education Provision on Determining Advance Care Planning Decisions among End Stage Renal Disease Patients Receiving Regular Hemodialysis in University Malaya Medical Centre.

INTRODUCTION: Advance care planning (ACP) is a process of shared decision-making about future health-care plans between patients, health care providers, and family members, should patients becomes incapable of participating in medical treatment decisions. ACP discussions enhance patient's autonomy, focus on patient's values and treatment preferences, and promote patient-centered care. ACP is integrated as part of clinical practice in Singapore and the United States. AIM: To assess the clinical impact of education provision on determining ACP decisions among end-stage renal disease patients on regular hemodialysis at University Malaya Medical Centre (UMMC). To study the knowledge and attitude of patients toward ACP and end-of-life issues. MATERIALS AND METHODS: Fifty-six patients were recruited from UMMC. About 43 questions pretest survey adapted from Lyon's ACP survey and Moss's cardiopulmonary resuscitation (CPR) attitude survey was given to patients to answer. An educational brochure is then introduced to these patients, and a posttest survey carried out after that. The results were analyzed using SPSS version 22.0. RESULTS: Opinion on ACP, including CPR decisions, showed an upward trend on the importance percentage after the educational brochure exposure, but this was statistically not significant. Seventy-five percent of participants had never heard of ACP before, and only 3.6% had actually prepared a written advanced directive. CONCLUSION: The ACP educational brochure clinically impacts patients' preferences and decisions toward end-of-life care; however, this is statistically not significant. Majority of patients have poor knowledge on ACP. This study lays the foundation for execution of future larger scale clinical trials, and ultimately, the incorporation of ACP into clinical practice in Malaysia.

Distress Reduction for Palliative Care Patients and Families With 5-Minute Mindful Breathing: A Pilot Study.

A pilot study was conducted to evaluate the efficacy of 5-minute mindful breathing in distress reduction. Twenty palliative care patients and family caregivers with a distress score ≥4 measured by the Distress Thermometer were recruited and randomly assigned to mindful breathing or "listening" (being listened to). Median distress reductions after 5 minutes were 2.5 for the mindful breathing group and 1.0 for the listening group. A significantly larger reduction in the distress score was observed in the mindful breathing group (Mann-Whitney U test: U = 8.0, n1 = n2 = 10, mean rank1 = 6.30, mean rank2 = 14.70, z = -3.208, P = .001). The 5-minute mindful breathing could be useful in distress reduction in palliative care.

Mindfulness-based supportive therapy (MBST): proposing a palliative psychotherapy from a conceptual perspective to address suffering in palliative care.

OBJECTIVE: To develop a mindfulness-based palliative psychotherapy to address psychoexistential suffering in palliative care. CONCEPTUALIZATION: First, a theory of suffering was formulated by merging 2 models of suffering from 2 thematic analyses of 20 palliative care patients and 15 informal caregivers. Second, the results from a secondary thematic analysis of suffering caused by health care interactions were conceptualized into a psychotherapy framework. Third, principles of mindfulness were incorporated into the framework to form a mindfulness-based psychotherapy. RESULTS: Mindfulness-based supportive therapy (MBST) was developed with the following 5 components of presence, listening, empathy, compassion, and boundary awareness. CONCLUSION: We believe that MBST is a potentially useful psychological intervention in palliative care, specifically designed to address psychoexistential suffering of terminally ill patients.

The experiences of stress of palliative care providers in Malaysia: a thematic analysis.

A qualitative study was conducted with semistructured interviews to explore the experiences of stress in 20 palliative care providers of University Malaya Medical Centre in Malaysia. The results were thematically analyzed. Nine basic themes were generated: (1) organizational challenges, (2) care overload, (3) communication challenges, (4) differences in opinion, (5) misperceptions and misconceptions, (6) personal expectations, (7) emotional involvement, (8) death and dying thoughts, and (9) appraisal and coping. A total care model of occupational stress in palliative care was conceptualized from the analysis. This model may inform the development of interventions in the prevention and management of stress in palliative care.

The Experiences of Well-Being of Palliative Care Patients in Malaysia: A Thematic Analysis.

A qualitative study was conducted with semistructured interviews to explore the experiences of well-being in 15 adult palliative care inpatients of University Malaya Medical Center, Kuala Lumpur, Malaysia. The results were thematically analyzed. Six basic themes were generated (1) positive attitude, (2) positive cognitions, (3) positive emotions, (4) positive engagement, (5) positive relationships, and (6) positive circumstances. The Seeds Model was conceptualized from the analysis. This model may inform the development of interventions in the enhancement of well-being of palliative care patients.

The experiences of suffering of palliative care patients in Malaysia: a thematic analysis.

A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering in 20 adult palliative care inpatients of University Malaya Medical Centre. The results were thematically analyzed. Ten basic themes were generated (1) loss and change → differential suffering, (2) care dependence → dependent suffering, (3) family stress → empathic suffering, (4) disease and dying → terminal suffering, (5) health care staff encounters → interactional suffering, (6) hospital environment → environmental suffering, (7) physical symptoms → sensory suffering, (8) emotional reactions → emotional suffering, (9) cognitive reactions → cognitive suffering, and (10) spiritual reactions → spiritual suffering. An existential-experiential model of suffering was conceptualized from the analysis. This model may inform the development of interventions in the prevention and management of suffering.

Health care interactional suffering in palliative care.

A secondary analysis of 2 qualitative studies was conducted to explore the experiences of suffering caused by interactions with health care providers in the hospital setting. Interview transcripts from 20 palliative care patients and 15 palliative care informal caregivers in University Malaya Medical Centre were thematically analyzed. The results of health care interactional suffering were associated with themes of attention, understanding, communication, competence, and limitation. These 5 themes may serve as a framework for the improvement in interaction skills of health care providers in palliative care.

Pediatric palliative care: using miniature chairs to facilitate communication.

Good communication is essential but sometimes challenging in pediatric palliative care. We describe 3 cases whereby miniature chairs made of various materials and colors were used successfully to encourage communication among pediatric patients, family, and health care professionals. This chair-inspired model may serve as a simple tool to facilitate complex discussions and to enable self-expression by children in the pediatric palliative care setting.

The experiences of suffering of palliative care informal caregivers in Malaysia: a thematic analysis.

A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering in 15 palliative care informal caregivers in University Malaya Medical Centre. The data were thematically analyzed. Seven basic themes were generated (1) empathic suffering, (2) anticipatory grief, (3) obsessive-compulsive suffering, (4) helpless-powerless suffering, (5) obligatory suffering, (6) impedimental suffering, and (7) repercussion suffering. A model of compassion suffering was conceptualized from the analysis. This model may serve as a guide in the assessment and management of suffering in palliative care informal caregivers.

Multiple subcutaneous puncture and stoma bag drainage for gross lower limb edema: a case report.

We present a case of gross lower limb edema in a 21-year-old man with an intra-abdominal malignant fibrous histiocytoma. He had a 1-month history of lower limb edema secondary to inferior vena caval obstruction. His edema failed to respond to a combination of diuretics, oral frusemide 40 mg daily and oral spironolactone 100 mg daily. Subcutaneous drainage of both lower limbs with butterfly needles was performed with minimal improvement. However, he gained significant symptomatic relief with multiple subcutaneous punctures and stoma bag drainage. A total of 12.8 L of serous fluid was drained with this simple and effective method. This is the first report of the use of this method.