An exploratory study of the knowledge, attitudes and perceptions of advance care planning in family caregivers of patients with advanced illness in Singapore.

OBJECTIVE: The aim of this study was to examine the knowledge, attitudes and perceptions of advance care planning (ACP) in caregivers of patients with advanced illness in Singapore. METHODS: Family caregivers of patients within the palliative care unit in a hospital and a hospice were purposively recruited and interviewed. Qualitative content analysis was carried out exploring key themes and subthemes emerging from the data. RESULTS: Between May 2009 and May 2010, 18 participants were interviewed. All participants interviewed had low awareness of ACP and the Advance Medical Directive but felt that ACP is important. Perceived benefits of ACP were that it respects autonomy, guides patients and families, and reduces burden of decision-making near the end-of-life. Barriers to ACP include non-disclosure of diagnosis as well as uncertainty of when and how ACP should be broached. There was a reticence to talk openly about issues surrounding end-of-life care as a result of cultural taboo and a fear that doing so will destroy hope. While all participants would consider ACP for themselves, some were ambivalent about discussing ACP for their loved ones, especially when their loved ones were of an older generation. Involvement of the family unit and physicians in ACP were viewed as important. CONCLUSION: This study highlights the need for public education on the benefits and process of ACP in Singapore. In formulating an approach to ACP, there is a need to take into account cultural sensitivities towards ACP discussions and the importance of closely involving the family unit in the process.

The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.

OBJECTIVE: To determine, using the perspective of a hospital-based palliative care service (PCS), the spiritual and psychosocial impact of a novel and potentially fatal viral epidemic on patients, their families and health care workers. DESIGN: Qualitative study using semi-structured interviews. The data were analysed using the constant comparative method and were validated using respondent validation. PARTICIPANTS: Eight palliative care workers. SETTING: Tan Tock Seng Hospital (TTSH), the hospital designated to manage all cases of Severe Acute Respiratory Syndrome (SARS) in Singapore. RESULTS: Disease containment resulted in isolation, where isolation meant the disruption of connectedness. This disruption of connectedness took place at multiple levels: in the patient himself, between the patient and the family, within the family, between the patient and the health care worker, between the patient and society, and between health care workers. As the nature of the disease was uncertain, prognostication was inaccurate. This created difficulties in helping patients and their families prepare for death. The fear of facing the unknown led to safety-seeking behaviours, which could be overcome by repeated exposure to the feared situation. The process of bereavement was disturbed, as traditional death rituals could not be performed by the family. Informants perceived themselves to be suffering as they suffered the same anxieties, fears and grief as the patient. CONCLUSIONS: Dealing with a novel viral epidemic creates spiritual and psychosocial issues similar to those encountered in a palliative care practice. Palliative care workers would do well to be aware of such issues and act proactively when such epidemics arise.