Decision making

Asian, South Asian, Middle Eastern and African cultures are collective cultures. Accordingly the individual is part of the family unit in which decisions are made collectively.

The cultural expectations about who should be making health care decisions and who should be told about a patients’ serious diagnosis may conflict with the patients’ rights in New Zealand to information from health providers. An awareness of family expectations, and their underlying reasons for such expectations, will help the practitioner better understand and negotiate with distressed family members when end-of-life care issues need to be approached in a culturally sensitive manner.

Literature tells us that there are differing cultural perspectives on the full disclosure of health information such as a diagnosis with a poor prognosis or the giving of bad news to patients from a CALD background (Hasan & Periyakoil, 2010; Searight, 2005; Windsor, 2008). Reviewing general perspectives on models of decision-making can be helpful.

Patient Autonomy Model

The rights of the individual are considered paramount in Western culture and are reflected in the patient autonomy model. Following this model, bad news is communicated directly and honestly to the patient, who is then able to choose whether or not to be actively involved in all aspects of decision-making about the management of his or her illness (Windsor et al., 2008). The concept of patient autonomy is so powerful in Western cultures that people can safeguard their right to make future decisions about their own health by providing living wills and advance directives in the event of the loss of their ability to make such decisions.

Non-maleficence Model

The non-maleficence model is at the opposite end of the spectrum to the patient autonomy model in that the patient is not told of a poor prognosis in the belief that this will protect them against unnecessary physical and emotional harm (Windsor et al., 2008). Following this model, diagnostic and prognostic information is given to the patient’s immediate family members who then make treatment decisions on behalf of the patient. This approach is more common in families from Middle Eastern and African backgrounds.

Beneficence Model

In the middle of the spectrum is the model of beneficence in which decisions about health care and treatment tend to be made jointly by family members (who are often the main caregivers) and the patient, rather than by the patient alone. In this setting the family rather than the patient are the first to be informed of the diagnosis and/or the suggested management plan. This approach is common in Asian countries including: China, India, Korea, Singapore and Thailand (Windsor et al., 2008).

Chinese perspectives

In traditional Chinese families, physician and family-based decision making is preferred over client autonomy. Decision making is traditionally expected of the husband or the eldest son. Caring for the sick and dying is the duty of the family. It is also important to ask about whether there is an accepted family decision maker (Yeo, 1995).

Traditional Chinese families expect that information will be conveyed to the family first.

Sensitivity and subtleness is important because the family believes that the loved one may lose the will to live or may be upset and unhappy for their remaining time. Chinese people do not like discussing taboo subjects such as death, dying and cancer issues. They would prefer indirect nuances over truth telling. They believe that discussing death and dying may lead to something bad happening.

Korean perspectives

Collective decision making in traditional Korean families is expected. Respect for one’s parents and ancestors are a feature of filial piety. Illness is considered a family event, rather than an individual occurrence (Searight, 2005). Traditionally, the husband or the eldest son is expected to be the decision maker in the family.

The relationship between parents and children is very important in Korean culture. There is a subtle understanding that a parent will make decisions in the best interests of their children, and children will make decisions in the best interests of their parents. This may conflict with practical decisions. Parents and children may assume that they know what is best and may not discuss the issue with each other. For example, there may be a conflict of views between health practitioners and family members about the quality of life of the dying person. The older person’s children may wish to prolong life, believing that they are doing their best (both emotionally and financially) to support their parent who is dying. In all likelihood children will not want to make a decision about stopping treatment if it is available and free.

Middle Eastern perspectives

It is expected in traditional Muslim families that the patient is not given bad news and that the patient’s diagnosis and prognosis is given to their immediate family members who then make treatment decisions on behalf of the patient (Windsor et al., 2008).

In Middle Eastern families, elders will often involve family members in decision making, and will commonly involve a son or a daughter (Hasan & Periyakoil, 2010). When an older person becomes ill, it is the family who expect to be fully involved in all aspects of treatment and care rather than the client. Even in the case of a conscious client, the family expect that they and the physician will generally protect the client from the anxiety and distress associated with the knowledge of a terminal illness.

Muslim perspectives

An essential aspect of health care for Muslim families is the health providers' role in: understanding the concerns of the client and family and communicating these concerns to all those involved in the decision-making process; consoling and comforting the older person and their family so that they can accept their or their loved one's health status; and, if possible, taking care of the family's needs beyond the medical aspects.

Traditional Muslim families tend to symbolically and formally introduce the doctor into the family. The doctor/specialist is expected to direct rather than just facilitate medical management (Hasan & Periyakoil, 2010).