Family Responsibility for Care Decisions
The concept of autonomy and being informed of one’s condition in Arab culture is viewed differently that in the Western culture. In the Western culture, autonomy is the most important principle in bioethics; and is applied to the individual patient’s right to make decisions concerning their medical care.
For the Arab Muslim patient, responsibility for decision making about the patients’ medical care is almost always delegated to the family decision maker. The patient may give their autonomy to the family; and expects the family to make decisions in his/her best interest. Thus, the patients is acting ‘autonomously’ through the family; the ‘autonomous’ entity is the family; not the individual patient.
The family decision maker is usually (traditionally) the older male; however in more recent /modern times will be the father (or the mother if with a child). The identity of the family decision maker in regards information and decision making for the patient will depend on the background of the family. The main issue for the health care team is to clearly identify ‘who is the decision maker’ acting on behalf of the patient who is the key point of contact for the patient.
This is particularly important in the case of complex family dynamics, involving more than one wife or children from different mothers. The family decision maker will decide on the rules/interactions related to the different wives.
The family will have major input on all decisions related to the care of their loved one; and will be involved in the consent process for all procedures. The physician will usually explain more to the family than the patient as culturally the physician usually works through the family to care for the patient to obtain consent.
The team needs to accept that decision making takes time. While there is a ‘key decision maker’; it is not one person who is making the decision as other family members will be consulted.
Some patients may not wish to make a decision about their care but will be affected / influenced by one or more family members. Some patients may feel ashamed or be blamed by family members if they do not consult with the right decision maker or hide information from the family.
A family conference may need to be facilitated for more complete discussion on significant patient care decisions. The family should determine who will attend from the family through the family decision maker; and the social worker can assist in coordination.