The Position of the Family of Palliative Care Patients within the Decision-Making Process at the End of Life in Singapore

Article excerpt

Abstract

The position of the family unit within the decision making process at the end of life in the context of Singapore is frequently underplayed and poorly understood due in part to its complex interplay with almost every element of patient care. Yet clearly its elucidation is of utmost importance to health professionals involved in caring for the terminally-ill in Singapore. Not only is Singapore a melting pot of various cultures but also significant inter-ethnic variances arise as a result of coadunations of specific social, educational, cultural, religious, and financial factors. In general, the family plays a role of a surrogate in decision-making, a provider in financial matters, a psychologist, a care-giver, a minister to spiritual needs, and an executor of post-mortem wishes. Whilst these roles seem to translate across all ethnic groups and cultures in Singapore, some distinct differences are apparent which prevent simple generalisations being drawn. This is particularly the case given that significant variations occur even within each family irrespective of ethic group. This paper focuses on the decision making preferences of the dominant Chinese populous.

A particularity of the Chinese population in Singapore is the significant interplay of elements of Christian, Confucian, Buddhist, Taoist, and Mohist beliefs in varying proportions. Of particular interest within this blending is the combination of Confucian ideals of familialism with western ideals of individualism, a combination which is relevant to palliative care teams involved in the patient's care as they endeavour to provide holistic care to both the patient and his family. Ascertaining the patients' and their families' position, beliefs, hopes, and goals of care is imperative to the provision of good, patient-centred care and the cornerstone of palliative care interventions. This paper will aid in positioning the role of the family within this concept and will provide ethical rationale for this assertion.

The Position of the Family Within the Palliative Care Concept

Given the definition of palliative care forwarded by the World Health Organisation (WHO), the position of the family unit is afforded prime importance.1 According to this definition, palliative care is

an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

* provides relief from pain and other distressing symptoms;

* affirms life and regards dying as a normal process;

* intends neither to hasten nor to postpone death;

* integrates the psychological and spiritual aspects of patient care;

* offers a support system to help patients live as actively as possible until death;

* offers a support system to help the family cope during the patients illness and in their own bereavement;

* uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;

* will enhance quality of life, and may also positively influence the course of illness;

* is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.1

Divining the position accorded to the family by such a definition unearths a number of significant requirements of which health professionals should be cognisant. These include the need to

1. consider the family on equal footing with the patient

2. enhance the family's quality of life

3. relieve and prevent suffering of the family in addition to that of the patient

4. …