The views of older Malaysians on advanced directive and advanced care planning: a qualitative study.

The provision of optimum care for the ageing population is dependent on the understanding of their views and values on end of life issues. A qualitative descriptive study was conducted to describe views of elderly Malaysians on Advanced Care Planning (henceforth ACP) and Advanced Directives (henceforth AD), and explore factors influencing these views. Fifteen elderly subjects with ages ranging from 65 to 83 years, representing different ethnic and religious groups in Malaysia were selected for in-depth interviews guided by a questionnaire. Five core themes were extracted from the interviews: 1) Considering the future 2) Contingency plans for future illnesses 3) Attitudes towards life prolonging treatment procedures 4) Doctor-patient relationships and 5) Influence of religion on decisions related to future illness. Despite the lack of knowledge on ACP and AD, older respondents were very receptive to their concept. Although the majority agreed on the importance of planning for future medical management and having open discussion on end of life issues with their doctor, they felt it unnecessary to make a formal written AD. Most felt that the future was best left to fate or God, and none had made any contingency plan for severe future illnesses citing religion as reason for this view. Cardiopulmonary resuscitation, mechanical ventilation and dialysis were considered by most to be invasive life prolonging treatments. We suggest that doctors initiate discussions on end of life care with every older patient and their family so as to promote awareness and introduce the concept of ACP/AD to a Malaysian setting.

Caregiving burden is associated with short rather than long duration of care for older persons.

This is a preliminary cross-sectional study of 51 caregivers of older persons attending the Geriatric Clinic at an urban hospital in Kuala Lumpur, Malaysia. A questionnaire helped determine how the duration of caregiving affects the outcome of caregiver burden. The short version of Zarit's Burden Interview (BI) allowed the burden level to be grouped as low or high burden. The duration of caregiving was also grouped into short (two or less years) or long (more than two years) durations. One third of the caregivers, 31% (16 out of 51) reported high burden and within this group 81%, (13 out of 16) are short duration caregivers. Majority of the longer duration caregivers, 88% (21 out of 24) reported low level of burden. This was a significant finding (p-value 0.008). The study also showed that a higher proportion of caregivers are employed, working in the private sector, and earn less than RM2,000 per month. However, these findings were not significantly associated with high burden. It is concluded that although this study showed low level of caregiver burden, shorter duration of caregiving is associated with higher level of burden and longer duration of caregiving is associated with lower level of burden.

Social support and burden among caregivers of patients with dementia in Malaysia.

This study aims to examine selected factors of dementia patients and their caregivers that were associated with the burden of family caregivers. This cross sectional study involves face-to-face interview with family caregivers of patients with dementia. Participants were recruited through convenient sampling from geriatric and psychiatry outpatient clinics from three government hospitals, one university hospital, one rural health centre and Alzheimer Disease caregivers' support groups. 70 caregivers took part in the study. Measures included patient and caregiver demographic variables and caregiver burden using the Zarit Burden Interview (ZBI). Caregiver burden was found to be significantly associated with both ethnicity and informal support. Chinese caregivers were found to have a higher level of burden compared to Indians and Malays. Informal support, in particular assistance from family members, was significantly associated with a lower burden perceived by the caregivers. However, the study shows that formal support such as assistance from maids and private nurses did not alleviate the burden of caregivers. Results highlighted the importance of improving the coping skills in burdened caregivers particularly among family members with dementia relatives. Interventions should be designed for specific needs of caregivers of different ethnicities.

Long-term nasogastric tube feeding in elderly stroke patients--an assessment of nutritional adequacy and attitudes to gastrostomy feeding in Asians.

BACKGROUND: Gastrostomy feeding is superior to long-term nasogastric (NG) feeding in patients with dysphagic stroke, but this practice remains uncommon in Asia. We sought to examine the nutritional adequacy of patients on long term NG feeding and identify barriers to gastrostomy feeding in these patients. METHODOLOGY: A prospective comparison of subjective global assessment (SGA), and anthropometry (mid-arm muscle circumference, MAMC; triceps skinfold thickness, TST) between elderly stroke patients on long-term NG feeding and matched controls was performed. Selected clinicians and carers of patients were interviewed to assess their knowledge and attitudes to gastrostomy feeding. RESULTS: 140 patients (70 NG, 70 oral) were recruited between September 2010 and February 2011. Nutritional status was poorer in the NG compared to the oral group (SGA grade C 38.6% NG vs 0% oral, p<0.001; TST males 10.7 + 3.7 mm NG vs 15.4 + 4.6 mm oral, p<0.001; MAMCmales 187.9 + 40.4 mm NG vs 228.7 + 31.8 mm oral, p<0.001). 45 (64.3%) patients on long-term NG feeding reported complications, mainly consisting of dislodgement (50.5%), aspiration of feed content (8.6%) and trauma from insertion (4.3%). Among 20 clinicians from relevant speciliaties who were interviewed, only 11 (55%) clinicians would routinely recommend a PEG. All neurologists (100%) would recommend a PEG, whilst the response was mixed among non-neurologists. Among carers, lack of information (47.1%) was the commonest reason stated for not choosing a PEG. CONCLUSION: Elderly patients with stroke on long term NG feeding have a poor nutritional status. Lack of recommendation by clinicians appears to be a major barrier to PEG feeding in these patients.