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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: Terminal Care
Fulltext Palliative care approach for preemie – an ethical case learning

Fahisham Taib, Lee, Chee Chan

Education in Medicine Journal, 2018;10(2):55-59.
MyJurnal

Palliative care for life limiting conditions usually starts at birth. In neonatal period, planning,
discussion and goal of care should focus towards improving the baby quality of life. It does not mean
palliative care in this age group mainly as end of life care. We illustrate a complex 30 weeks baby
who was born with genetic abnormality complicated with intracranial bleeding and acute myeloid
leukaemia. There were various ethical issues related to the approach of death and dying infant and
psychosocial challenges surrounding the case.

Matched MeSH terms: Terminal Care
Islamic Considerations on the Application of Patient's Autonomy in End-of-Life Decision

Malek MM, Abdul Rahman NN, Hasan MS, Haji Abdullah L

J Relig Health, 2018 Aug;57(4):1524-1537.
PMID: 29417395 DOI: 10.1007/s10943-018-0575-5

In end-of-life situation, the need for patient's preference comes into the picture with the intention of guiding physicians in the direction of patient care. Preference in medical directive is made by a person with full mental capacity outlining what actions should be taken for his health should he loses his competency. This is based on the reality of universal paradigm in medical practice that emphasises patient's autonomy. A specific directive is produced according to a patient's wish that might include some ethically and religiously controversial directives such as mercy killing, physician-assisted suicide, forgoing life-supporting treatments and do-not-resuscitate. In the future, patient autonomy is expected to become prevalent. The extent of patient autonomy has not been widely discussed among Muslim scholars. In Islam, there are certain considerations that must be adhered to.

Matched MeSH terms: Terminal Care
Cultural health beliefs in a rural family practice: a Malaysian perspective

Ariff KM, Khoo SB

Aust J Rural Health, 2006 Feb;14(1):2-8.
PMID: 16426425 DOI: 10.1111/j.1440-1584.2006.00747.x

Background: Understanding the sociocultural dimension of a patient’s health beliefs is critical to a successful clinical encounter. Malaysia with its multi-ethnic population of Malay, Chinese and Indian still uses many forms of traditional health care in spite of a remarkably modern rural health service.
Objective: The objective of this paper is discuss traditional health care in the context of some of the cultural aspects of health beliefs, perceptions and practices in the different ethnic groups of the author’s rural family practices. This helps to promote communication and cooperation between doctors and patients, improves clinical diagnosis and Management, avoids cultural blind spots and unnecessary medical testing and leads to better adherence to treatment by patients.
Discussion: Includes traditional practices of ‘hot and cold’, notions of Yin-Yang and Ayurveda, cultural healing, alternative medicine, cultural perception of body structures and cultural practices in the context of women’s health. Modern and traditional medical systems are potentially complementary rather than antagonistic. Ethnic and cultural considerations can be integrated further into the modern health delivery system to improve care and health outcomes.
KEY WORDS: alternative medicine, child health, cultural healing, traditional medicine, women’s health

Matched MeSH terms: Terminal Care/methods
Cultural considerations in forgoing enteral feeding: A comparison between the Hong Kong Chinese, North American, and Malaysian Islamic patients with advanced dementia at the end-of-life

Ngan OMY, Bergstresser SM, Sanip S, Emdadul Haque ATM, Chan HYL, Au DKS

Dev World Bioeth, 2020 06;20(2):105-114.
PMID: 31241234 DOI: 10.1111/dewb.12239

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.

Matched MeSH terms: Terminal Care/ethics*
Withholding and withdrawal of life-sustaining treatments in intensive care units in Asia

Phua J, Joynt GM, Nishimura M, Deng Y, Myatra SN, Chan YH, et al.

JAMA Intern Med, 2015 Mar;175(3):363-71.
PMID: 25581712 DOI: 10.1001/jamainternmed.2014.7386

Little data exist on end-of-life care practices in intensive care units (ICUs) in Asia.

Matched MeSH terms: Terminal Care
When it hits close to home

Khoo SY

J Palliat Med, 2013 Jun;16(6):703.
PMID: 23614714 DOI: 10.1089/jpm.2012.0428
Matched MeSH terms: Terminal Care
Fulltext Modified Unipolar Hemiarthroplasty for the Treatment of Metastatic Lesions of Proximal Femur with Pathological Fractures: Case Series of Six Patients

Lim CY, Mat-Hassan S, Awang M, Md-Ariff MF, Hau-Abdullah MA

Malays Orthop J, 2019 Nov;13(3):21-27.
PMID: 31890106 DOI: 10.5704/MOJ.1911.004

Introduction: Proximal femur resection and endoprosthetic reconstruction is the preferred treatment for extensive bony destruction and pathological fractures. Due to the relatively high cost of endoprosthesis, we adopted the modified unipolar hemiarthroplasty (MUH) for reconstruction when the mode of treatment was for palliation. Materials and Methods: This is a retrospective case study of six patients, who had bone and multi-organs metastases with extensive proximal femur involvement with pathologic fractures who underwent resection and MUH reconstruction during the period 2013 to 2017. All patients were classified as Group B / C based on Scandinavian Sarcoma Group survival scoring, with estimated survival of maximum six months. The basic MUH construct consisted of Austin-Moore prosthesis which was secured to a Küntscher nail using cerclage wire and cemented into the femoral canal. Subsequently, the whole length of the prosthesis which remained outside the canal was coated with cement. Results: The mean age was 61.8 years. The mean survival was 3.9 months, post-operation. There was no implant failure during patients' life span; however, a third of the patients developed infection. Wheel chair ambulation was started immediately post-operation for all patients, and two patients progressed to walking frame ambulation. The total cost of each construct was below US$490 in comparison to long-stem hemiarthroplasty (roughly US$ 1700). Conclusion: Our aim was to alleviate pain, facilitate rehabilitation, ease nursing care and improve quality of life for metastatic bone disease patients until end of life. MUH for the treatment of pathological fracture in proximal femoral metastases is a feasible palliative surgical modality in resource-limited settings.

Matched MeSH terms: Terminal Care
Fulltext Morphine use for cancer pain: A strong analgesic used only at the end of life? A qualitative study on attitudes and perceptions of morphine in patients with advanced cancer and their caregivers

Ho JFV, Yaakup H, Low GSH, Wong SL, Tho LM, Tan SB

Palliat Med, 2020 May;34(5):619-629.
PMID: 32103707 DOI: 10.1177/0269216320904905

BACKGROUND: The prevalence of undertreated cancer pain remains high. Suboptimal pain control affects quality of life and results in psychological and emotional distress. Barriers to adequate pain control include fear of opioid dependence and its side effects.
AIM: To investigate the attitudes and perceptions of morphine use in cancer pain in advanced cancer patients and their caregivers and to examine the influence of caregivers' attitudes and perceptions on patients' acceptance of morphine.
DESIGN: Qualitative study involving semi-structured individual interviews transcribed verbatim and analyzed thematically.
SETTING/PARTICIPANTS: A total of 18 adult opioid-naïve patients with advanced cancer and 13 caregivers (n = 31) were recruited at a private tertiary hospital via convenience sampling.
RESULTS: Attitudes and perceptions of morphine were influenced by previous experiences. Prevalent themes were similar in both groups, including perceptions that morphine was a strong analgesic that reduced suffering, but associated with end-stage illness and dependence. Most participants were open to future morphine use for comfort and effective pain control. Trust in doctors' recommendations was also an important factor. However, many preferred morphine as a last resort because of concerns about side effects and dependence, and the perception that morphine was only used at the terminal stage. Caregivers' attitudes toward morphine did not affect patients' acceptance of morphine use.
CONCLUSION: Most participants were open to future morphine use despite negative perceptions as they prioritized optimal pain control and reduction of suffering. Focused education programs addressing morphine misperceptions might increase patient and caregiver acceptance of opioid analgesics and improve cancer pain control.

Matched MeSH terms: Terminal Care
Fulltext The development and validation of the advance care planning questionnaire in Malaysia

Lai PS, Mohd Mudri S, Chinna K, Othman S

BMC Med Ethics, 2016 10 18;17(1):61.
PMID: 27756366

BACKGROUND: Advance care planning is a voluntary process whereby individual preferences, values and beliefs are used to aid a person in planning for end-of-life care. Currently, there is no local instrument to assess an individual's awareness and attitude towards advance care planning. This study aimed to develop an Advance Care Planning Questionnaire and to determine its validity and reliability among older people in Malaysia.

METHODS: The Advance Care Planning Questionnaire was developed based on literature review. Face and content validity was verified by an expert panel, and piloted among 15 participants. Our study was conducted from October 2013 to February 2014, at an urban primary care clinic in Malaysia. Included were those aged >50 years, who could understand English. A retest was conducted 2 weeks after the first administration.

RESULTS: Participants from the pilot study did not encounter any problems in answering the Advance Care Planning Questionnaire. Hence, no further modifications were made. Flesch reading ease was 71. The final version of the Advance Care Planning Questionnaire consists of 66 items: 30 items were measured on a nominal scale, whilst 36 items were measured on a Likert-like scale; of which we were only able to validate 22 items, as the remaining 14 items were descriptive in nature. A total of 245 eligible participants were approached; of which 230 agreed to participate (response rate = 93.9 %). Factor analysis on the 22 items measured on a Likert-scale revealed four domains: "feelings regarding advance care planning", "justifications for advance care planning", "justifications for not having advance care planning: fate and religion", and "justifications for not having advance care planning: avoid thinking about death". The Cronbach's alpha values for items each domain ranged from 0.637-0.915. In test-retest, kappa values ranged from 0.738-0.947.

CONCLUSIONS: The final Advance Care Planning Questionnaire consisted of 63 items and 4 domains. It was found to be a valid and reliable instrument to assess the awareness and attitude of older people in Malaysia towards advance care planning.

Matched MeSH terms: Terminal Care