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Caring for families of the terminally ill in Malaysia from palliative care nurses' perspectives

Namasivayam P, Lee S, O'Connor M, Barnett T

J Clin Nurs, 2014 Jan;23(1-2):173-80.
PMID: 23651099 DOI: 10.1111/jocn.12242

AIMS AND OBJECTIVES: To describe the process that nurses experienced in engaging with families in Malaysian palliative care settings and the challenges they faced.
BACKGROUND: In palliative care settings, nurses and the terminally ill person's family members interact very closely with each other. It is important for nurses to work with families to ensure that the care of the terminally ill person is optimised.
RESEARCH DESIGN: A qualitative design using grounded theory methods was used to describe how nurses engaged with families and the challenges they faced.
METHODS: Twenty-two nurses from home care and inpatient palliative care settings across Malaysia participated in this study. Data were collected through seven interviews and eight focus group discussions conducted between 2007-2009.
RESULTS: The main problem identified by nurses was the different expectations to patient care with families. The participants used the core process of Engaging with families to resolve these differences and implemented strategies described as Preparing families for palliative care, Modifying care and Staying engaged to promote greater consistency and quality of care. When participants were able to resolve their different expectations with families, these resulted in positive outcomes, described as Harmony. However, negative outcomes of participants not being able to resolve their different expectations with families were Disharmony.
CONCLUSIONS: This study highlights the importance of engaging and supporting families of the terminally ill as well as providing a guide that may be used by nurses and carers to better respond to families' needs and concerns.
RELEVANCE TO CLINICAL PRACTICE: The study draws attention to the need for formal palliative care education, inclusive of family care, to enable nurses to provide the terminally ill person and their family effective and appropriate care.
KEYWORDS: Malaysia; beliefs; families; grounded theory; multicultural; nurses; nursing care; palliative care; terminally ill

Matched MeSH terms: Terminally Ill*
Fulltext Informal caregivers and their coping styles: a preliminary report

Nur Saadah Mohamad Aun, Siti Hajar Abu Bakar

Int J Public Health Res, 2011;1(1):23-30.
MyJurnal

Accepted 23 August 2011.
Introduction There is a strong correlation between stress and the quality of care provided by informal carers. In this regard, an accurate understanding about factors
contributing to stress among informal carers is crucial in order to find appropriate interventions to solve their problems.
Methods A pilot study was conducted in October 2009 in the Klang Valley area, to test the instrument liability in the local context. In-depth interviews were conducted with two informal caregivers who are providing full-time care for their chronically-ill family members.
Results Informal caregivers face multiple types of stress. A variety of factors such as financial problems, an unsupportive community, fatigue, the unavailability of social services to assist them and their inability to accept the fact that their loved ones are terminally ill, contribute to their stress.
Conclusions Differences in factors contribute to stress, and lead to the adoption of different styles of coping strategies: emotion and problem focused coping.

Matched MeSH terms: Terminally Ill
Fulltext A journey from the known to the unknown: a qualitative study approach

Helenna M Hisham Hashim, Lee, Mei-Li, Ng, Chong Guan

ASEAN Journal of Psychiatry, 2013;14(1):0-0.
MyJurnal

Objective: Individuals deal with dying and death differently and may not experience the same journey. We investigated Kübler-Ross' Five Stages of Grief on terminally ill patients to review the current applicability of the model among this population. The aims of this paper is to share information regarding the Five Stages of Grief, the emotions associated with the stages, and the challenges that terminally ill patients, namely those diagnosed with cancer, experience. Methods: Non-structured interviews were conducted among terminally ill patients located at the palliative ward for two years. Results: We found that terminally ill patients at the palliative ward were undergoing the Five Stages of Grief, and that the emotions associated with the stages were reported to be similar to the emotions proposed in the model and among the patients. Conclusion: Kübler-Ross' Five Stages of Grief is still applicable among terminally ill patients. The thoughts regarding dying and death still remain negative, therefore, the change in the myths of dying and death are required to help improve the journey towards death. ASEAN Journal of Psychiatry, Vol. 14 (1): January - June 2013: XX XX.

Matched MeSH terms: Terminally Ill
Fulltext Core Symptoms of Major Depressive Disorder among Palliative Care Patients

Huey NS, Guan NC, Gill JS, Hui KO, Sulaiman AH, Kunagasundram S

Int J Environ Res Public Health, 2018 08 16;15(8).
PMID: 30115817 DOI: 10.3390/ijerph15081758

A valid method to diagnose depression in palliative care has not been established. In this study, we aim to determine the prevalence of depression and the discriminant validity of the items of four sets of diagnostic criteria in palliative care. This is a cross-sectional study on 240 palliative care patients where the presence of depression was based on the Diagnostic and Statistical Manual of Mental Disorders, DSM⁻IV Criteria, Modified DSM⁻IV Criteria, Cavanaugh Criteria, and Endicott's Criteria's. Anxiety, depression, and distress were measured with Hospital Anxiety and Depression Scale and Distress Thermometer. The prevalence of depression among the palliative care patients was highest based on the Modified DSM⁻IV Criteria (23.3%), followed by the Endicott's Criteria (13.8%), DSM⁻IV Criteria (9.2%), and Cavanaugh Criteria (5%). There were significant differences (p < 0.05) in the depressive symptoms showed by DSM⁻IV item 1 (dysphoric mood), item 2 (loss of interest or pleasure), and Endicott's criteria item 8 (brooding, self-pity, or pessimism) among the palliative patients, even after adjustment for the anxiety symptoms and distress level. We found that dysphoric mood, loss of interest, and pessimism are the main features of depression in palliative patients. These symptoms should be given more attention in identifying depression in palliative care patients.

Matched MeSH terms: Terminally Ill/psychology*; Terminally Ill/statistics & numerical data
Fulltext Euthanasia and physician-assisted suicide: a review from islamic point of view

Yousuf, R.M., Mohammed Fauzi, A.R.

International Medical Journal Malaysia, 2012;11(1):63-68.
MyJurnal

Due to globalizing trend of homogenisation of culture, changes in the health care delivery system and market economics infringing on the practice of medicine, there has been a gradual shift in the attitude of the medical community as well as the lay public towards greater acceptance of euthanasia as an option for terminally ill and dying patients. Physicians in developing countries come across situations where such issues are raised with increasing frequency. As the subject has gained worldwide prominence, we want to review this topic from Islamic perspective due to its significance in medical ethics and clinical practice.

Matched MeSH terms: Terminally Ill
Happiness at the end of life: A qualitative study

Beng TS, Ghee WK, Hui NY, Yin OC, Kelvin KWS, Yiling ST, et al.

Palliat Support Care, 2021 Mar 15.
PMID: 33715663 DOI: 10.1017/S1478951521000262

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.

Matched MeSH terms: Terminally Ill
Hope in Palliative Care: A Thematic Analysis

Beng TS, Xin CA, Ying YK, Khuen LP, Yee A, Zainuddin SI, et al.

J Palliat Care, 2020 Aug 14.
PMID: 32791956 DOI: 10.1177/0825859720948976

BACKGROUND: Hope is a positive coping mechanism that is important at all stages of illness, more so for palliative care patients.
PURPOSE: 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.
FINDINGS: 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.

Matched MeSH terms: Terminally Ill
Fulltext Outcome of Skeletal Reconstructive Surgery for Metastatic Bone Tumours in the Femur

Mohamed-Haflah NH, Kassim Y, Zuchri I, Zulmi W

Malays Orthop J, 2017 Mar;11(1):28-34.
PMID: 28435571 MyJurnal DOI: 10.5704/MOJ.1703.013

INTRODUCTION: The role of surgery in skeletal metastasis is to reduce morbidity and improve the quality of life in terminally ill patients. We report our experience with patients who underwent skeletal reconstructive surgery for metastatic bone tumour of the femur.
MATERIALS AND METHODS: Twenty nine operations for skeletal metastasis of the femur performed in our centre between 2009 and 2015 were included in this study. We evaluated the choice of implant, complications, survival rate and functional outcome. Fourteen patients were still alive at the time of this report for assessment of functional outcome using Musculoskeletal Tumour Society (MSTS) form.
RESULTS: Plating osteosynthesis with augmented-bone cement was the most common surgical procedure (17 patients) performed followed by arthroplasty (10 patients) and intramedullary nailing (2 patients) There were a total of five complications which were implant failures (2 patients), surgical site infection (2 patients), and site infection mortality (1 patient). The median survival rate was eight months. For the functional outcome, the mean MSTS score was 66%.
CONCLUSION: Patients with skeletal metastasis may have prolonged survival and should undergo skeletal reconstruction to reduce morbidity and improve quality of life. The surgical construct should be stable and outlast the patient to avoid further surgery.

Matched MeSH terms: Terminally Ill
Fulltext Can I give food or drink to my terminally ill child?

Taufiq Hidayat, Zahoor Iqbal, Ariffin Nasir, Norsarwany Mohamad, Fahisham Taib

Education in Medicine Journal, 2015;7(3):73-78.
MyJurnal

Food is considered as a social responsibility of caregivers to their children. It has cultural connotation for all races notwithstanding their background and religious belief; that social responsibility should not be separated even in terminally ill patients. We recorded a case scenario of a terminally ill child who faced difficult end of life with inability to take oral fluids or food due to mechanical obstruction of duodenum by the pelvic rhabdomyosarcoma. From cultural context, the physical act of giving food and fluids to a sick person is considered “a display of one’s affection”. It is understandable that, once the dying phase has reached, and the body starts to shut down, administering fluids may not be useful despite it is deemed necessary from cultural point of view. This case illustrates an ethical dilemma in managing a child with end stage metastatic disease with multiple systemic complications, compounded with futility of medical care and complex social circumstances. It is quite challenging for physicians and relatives to provide good end of life care to patients in palliative care setting. Ensuring good quality of care, quality of life and quality of death are paramount to avoid suffering and distress among the patients and family members.

Matched MeSH terms: Terminally Ill
Fulltext Psychiatric comorbidity among terminally ill patients in general practice in the Netherlands: a comparison between patients with cancer and heart failure

Ng CG, Dijkstra E, Smeets H, Boks MP, de Wit NJ

Br J Gen Pract, 2013 Jan;63(606):e63-8.
PMID: 23336475 DOI: 10.3399/bjgp13X660797

It is unclear whether psychiatric disorders are specifically related to the terminal phase of cancer, or independent of the underlying disease.

Matched MeSH terms: Terminally Ill/psychology; Terminally Ill/statistics & numerical data*
Spiritual distress in a terminally ill patient with breast cancer

Loh KY

Int J Palliat Nurs, 2004 Mar;10(3):131-2.
PMID: 15126957
Matched MeSH terms: Terminally Ill/psychology*
Quality of life and functional status in patients with advanced cancer admitted to hospice home care in Malaysia: a cross-sectional study

Shahmoradi N, Kandiah M, Loh SP

Eur J Cancer Care (Engl), 2012 Sep;21(5):661-6.
PMID: 22369227 DOI: 10.1111/j.1365-2354.2012.01338.x

Cancer patients more than often experience poor quality of life after diagnosis and treatment of cancer. As the disease progresses quality of life issues become important. This cross-sectional study assessed various features of quality of life among 61 (33 women and 28 men) patients with advanced cancer cared by selected hospices in Peninsular Malaysia. The Hospice Quality of Life Index was used to assess quality of life. The mean total Hospice Quality of Life Index score for all subjects was 189.9 ± 51.7. The possible scores range from 0 to 280. The most problem areas in these patients were in the domain of functional well-being, followed by psychophysiological and social/spiritual domain. Patients with advanced cancer have a diminished quality of life. These findings suggest that there is a need for improving quality of life in terminally ill cancer patients in hospice care.

Matched MeSH terms: Terminally Ill
Fulltext Cross-sectional descriptive study of management modalities and quality of life of surgical patients in a palliative care unit

Amjad, N.M., Karim, K.A., Naing Soe, Y.

International Medical Journal Malaysia, 2016;15(1):35-43.
MyJurnal

Introduction: The goal of palliative care is the provision of the best quality of life (QOL) for terminally ill
and dying patients. Advances in medical treatment has seen an increase in overall survival of all stages of
malignant diseases. This includes advanced and/or inoperable malignancies where management is mainly
palliative involving different modalities. Methods: We designed a cross-sectional descriptive study of
surgical patients in a palliative care unit in a 1000-bedded teaching hospital in Kuantan, Malaysia.
Objectives of this study are: to study the demographic characteristics and indications for admission of
surgical patients in palliative care unit, to study the options of treatment modalities and their
complications, to identify the barriers in decision making in surgical treatment and finally to objectively
assess the quality of life of these patients by utilizing QUALITY OF LIFE (WHOQOL) –BREF –questionnaire.
Results: One hundred and one eligible patients (53%) male, (47%) female of mean age of 54yrs, majority
Malay and Chinese patients were included in the study. All patients had malignancies and they were Breast
(30%), Lower gastrointestinal (GI) (24%), (18%) upper GI, (15%) hepato-biliary, and (7%) pancreatic cancers.
Thirty two percents of patients had emergency treatment while the rest had supportive treatment. Barriers
to decision making were mainly due to patient factors in 71%, while 12% was due to the disease presenting
at an advanced stage and 15% due to limitation of care. The final results of overall quality of life rating
were shown as poor (1%), neither poor nor good (42%), good (52%) and very good (2%). Conclusions:
Palliative care and end of life decision making from surgical point of view is a delicate issue. Like all other
fields in medicine, palliative care must be evidence-based with specific goal directed therapy. Our study
shows that we are able to positively impact the quality of life in more than two thirds of our patients. Our
aim is to achieve 100% success. As such, it is imperative to inculcate the goal of palliative care to all grades
of health care personnel. ‘To cure sometimes, To relieve often, To comfort always’ should not be mere
words.

Matched MeSH terms: Terminally Ill
Rapid response to methylphenidate as an add-on therapy to mirtazapine in the treatment of major depressive disorder in terminally ill cancer patients: a four-week, randomized, double-blinded, placebo-controlled study

Ng CG, Boks MP, Roes KC, Zainal NZ, Sulaiman AH, Tan SB, et al.

Eur Neuropsychopharmacol, 2014 Apr;24(4):491-8.
PMID: 24503279 DOI: 10.1016/j.euroneuro.2014.01.016

This is a 4 week, randomized, double-blind, placebo-controlled study to examine the effects of methylphenidate as add-on therapy to mirtazapine compared to placebo for treatment of depression in terminally ill cancer patients. It involved 88 terminally ill cancer patients from University of Malaya Medical Centre, Kuala Lumpur, Malaysia. They were randomized and treated with either methylphenidate or placebo as add on to mirtazapine. The change in Montgomery-Åsberg Depression Rating Scale (MADRS) score from baseline to day 3 was analyzed by linear regression. Changes of MADRS and Clinical Global Impression-Severity Scale (CGI-S) over 28 days were analyzed using mixed model repeated measures (MMRM). Secondary analysis of MADRS response rates, defined as 50% or more reduction from baseline score. A significantly larger reduction of Montgomery-Åsberg Depression Rating Scale (MADRS) score in the methylphenidate group was observed from day 3 (B=4.14; 95% CI=1.83-6.45). Response rate (defined as 50% or more reduction from baseline MADRS score) in the methylphenidate treated group was superior from day 14. Improvement in Clinical Global Impression-Severity Scale (CGI-S) was greater in the methylphenidate treated group from day 3 until day 28. The drop-out rates were 52.3% in the methylphenidate group and 59.1% in the placebo group (relative risk=0.86, 95%CI=0.54-1.37) due to cancer progression. Nervous system adverse events were more common in methylphenidate treated subjects (20.5% vs 9.1%, p=0.13). In conclusions, methylphenidate as add on therapy to mirtazapine demonstrated an earlier antidepressant response in terminally ill cancer patients, although at an increased risk of the nervous system side effects.

Matched MeSH terms: Terminally Ill/psychology*
Improving cancer pain management in Malaysia

Lim R

Oncology, 2008;74 Suppl 1:24-34.
PMID: 18758194 DOI: 10.1159/000143215

Within Malaysia's otherwise highly accessible public healthcare system, palliative medicine is still an underdeveloped discipline. Government surveys have shown that opioid consumption in Malaysia is dramatically lower than the global average, indicating a failure to meet the need for adequate pain control in terminally ill patients. Indeed, based on daily defined doses, only 24% of patients suffering from cancer pain receive regular opioid analgesia. The main barriers to effective pain control in Malaysia relate to physicians' and patients' attitudes towards the use of opioids. In one survey of physicians, 46% felt they lacked knowledge to manage patients with severe cancer pain, and 64% feared effects such as respiratory depression. Fear of addiction is common amongst patients, as is confusion regarding the legality of opioids. Additional barriers include the fact that no training in palliative care is given to medical students, and that smaller clinics often lack facilities to prepare and stock cheap oral morphine. A number of initiatives aim to improve the situation, including the establishment of palliative care departments in hospitals and implementation of post-graduate training programmes. Campaigns to raise public awareness are expected to increase patient demand for adequate cancer pain relief as part of good care.

Matched MeSH terms: Terminally Ill
Impact of nutritional status on the quality of life of advanced cancer patients in hospice home care

Shahmoradi N, Kandiah M, Peng LS

Asian Pac J Cancer Prev, 2009;10(6):1003-09.
PMID: 20192573

BACKGROUND: Cancer patients frequently experience malnutrition and this is an important factor in impaired quality of life.
OBJECTIVE: This cross-sectional study examined the association between global quality of life and its various subscales with nutritional status among 61 (33 females and 28 males) advanced cancer patients cared for by selected hospices in peninsular Malaysia.
METHODS: The Patient Generated-Subjective Global Assessment (PG-SGA) and the Hospice Quality of Life Index (HQLI) were used to assess nutritional status and quality of life, respectively.
RESULTS: Nine (14.7%) patients were well-nourished, 32 (52.5%) were moderately or suspected of being malnourished while 20 (32.8%) of them were severely malnourished. The total HQLI mean score for these patients was 189.9-/+51.7, with possible scores ranging from 0 to 280. The most problem areas in these patients were in the domain of functional well-being and the least problems were found in the social/spiritual domain. PG-SGA scores significantly correlated with total quality of life scores (r2= 0.38, p<0.05), psychophysiological well-being (r2= 0.37, p<0.05), functional well-being (r2= 0.42, p<0.05) and social/ spiritual well-being (r2= 0.07, p<0.05). Thus, patients with a higher PG-SGA score or poorer nutritional status exhibited a lower quality of life.
CONCLUSION: Advanced cancer patients with poor nutritional status have a diminished quality of life. These findings suggest that there is a need for a comprehensive nutritional intervention for improving nutritional status and quality of life in terminally ill cancer patients under hospice care.

Matched MeSH terms: Terminally Ill
Fulltext The Health Status of Muslim Women with HIV/AIDS in Arab Countries

Salih, F.A.M., Haque, Q.M.

International Medical Journal Malaysia, 2007;6(2):1-5.
MyJurnal

The number of people worldwide living with human immunodeficiency virus/ acquired immunodeficiency virus (HIV/AIDS) is more than 40 million, among them 17.7 millions are women (UNAIDS/WHO, 2006) The latest report from the Eastern Mediterranean Region shows that at least one million people are infected with HIV; among them 30% are women. The great majority of reported cases in the Region are men. However, the ratio of men to women cases varies in different countries. It ranges between “9:1 (as for example in Egypt), to 2:1” (as in Morocco and some parts of Yemen). Due to religious, social and cultural values regarding female purity, women and girls living with HIV and AIDS are subjected to greater discrimination than men. WHO reports show that a large percentage of the infected women in Arab countries have contacted the infection from their husbands especially migrants and drug abusers. In Arab countries, studies conducted show that 86% of women choose not to disclose their status of infection for the fear of abandonment, rejection, discrimination, violence, upsetting family members, and accusations of infidelity from their partners, families, and communities. As a result, many women only seek help at the last minute when they are already been terminally ill. Violence against women and girls in its different forms increases women's vulnerability to HIV infection and undermines AIDS control efforts. The fear of violence prevents many women from accessing HIV information, from getting testing and seeking treatment. Stigma and discrimination may also prevent them from carrying out their normal life activities. When women are blamed, this can lead to heightened levels of sexual and domestic violence, abandonment by families and communities, forced abortion or sterilization, dismissal from employment and loss of livelihood opportunities. A study of AIDS-related discrimination in Arab region found that over ten percent of women had lost financial support from family members since being diagnosed as HIV positive. There is a great deal of evidence to establish the significant link between gender-based violence and rising rates of HIV infection among women and girls throughout the world. HIV-positive women must be supported to make their own reproductive choices about whether and/or when to have children. Promote male involvement in sexual and reproductive health programmes. Finally the stigma, discrimination and violations must be stopped.

Matched MeSH terms: Terminally Ill

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