Your bodies: Whose decision?

1. Your bodies: Whose decision? Yip Cheng Har Professor Dept of Surgery University Malaya Kuala Lumpur

2. Decision making in health issues • Decision making is a complex process depending on many factors both endogenous and exogenous • Depends on the woman’s preference and clinical symptoms and the clinician’s assessment and treatment plan • Freedom in decision-making is a significant aspect of an individual´s autonomy, empowerment and personal freedom • It comprises the ability to take decisions and to act accordingly in order to achieve personal wishes, desires or goals.

3. Islam and health • ‘The religious and cultural beliefs of Muslim women impact their healthcare needs and they face major barriers while seeking healthcare that the rest of the population, particularly healthcare providers, often are unaware of.’

4. Islamic bioethics • Islamic bioethics is intimately linked to the broad ethical teachings of the Qur’an and the tradition of the Prophet Muhammad, and thus to the interpretation of Islamic law. • Bioethical deliberation is inseparable from the religion itself, which emphasises the continuities between body and mind, the material and spiritual realms, and between ethics and jurisprudence

5. Decision making in Islam • In Islamic cultures, women’s decision-making power may be limited and male family members often have the primary say in matters related to health care seeking behaviour • In Islam, the husband is the head of the family and while he should be consulted and involved in any big decisions regarding management of a woman with health problems, eventually she has ownership of her own body and she should take the final decision.

6. Women in Islam • The rules for married life in Islam are clear and in harmony with upright human nature. • In consideration of the physiological and psychological make-up of man and woman, both have equal rights and claims on one another, except for one responsibility, that of leadership. • This is a matter which is natural in any collective life and which is consistent with the nature of man. • The Qur'an thus states: • "And they (women) have rights similar to those (of men) over them, and men are a degree above them." (Qur'an 2:228).

7. Women in Islam • Men shall take full care of women, because Allah has given the one more strength than the other, and because they support them from their means. Qur'an [4 : 34] • This refers to that natural difference between the sexes which entitles the weaker sex to protection. It implies no superiority or advantage before the law. • Yet, man's role of leadership in relation to his family does not mean the husband's dictatorship over his wife. • Islam emphasizes the importance of taking counsel and mutual agreement in family decisions.

8. Women in Islam • The Quran, on the other hand, never considers any woman to be the possession of any man. • The Quran eloquently describes the relationship between the spouses by saying," And among His signs is that He created for you mates from among yourselves, that you may dwell in tranquility with them and He has put love and mercy between your hearts: verily in that are signs for those who reflect" (30:21) • This is Quranic conception of marriage: love, mercy, and tranquility, not possession and double standards.

9. Role of significant others and family members in decision making • Family members are frequently important partners for many women when making health-related decisions. • The role and influence of family members in treatment/intervention decisions generally remains unexplored, but could be of potential significance, especially for certain cultural/ethnic groups. • Cultural beliefs, mores, and values are factors that are seldom addressed in clinical investigations, particularly in the area of health-related decision making. • In contrast to legal and bioethical approaches, which focus on the patient as the primary decision maker, the role of the husband in the decision-making process is important. This reflects a relational rather than an individualistic perception of patient autonomy.

10. Role of significant others and family members in decision making • The extended family is important in Muslim cultures and may also play an important role in the medical decision-making process. • It is common for family members to become concerned with the care of an individual patient, with great respect paid to the advice and opinions of the elders in the family. • The elder or male family head may be involved in negotiating and approving a treatment plan, or determining the disclosure of medical information, like a sensitive diagnosis or poor prognosis, for a woman. • This is in particular regarding body parts which are essentially female, such as the breast and the reproductive organs.

11. Breast cancer • Breast cancer is the number one killer of women in the most Muslim countries. • A large number of women die because they do not seek treatment in a timely fashion. • Part of this delay in seeking treatment until the late stages can be attributed to fatalism, ie illness can be viewed as a punishment for the breach of religious codes and morals, and hence one cannot reverse fate

12. Illness may be seen as a trial or even as a cleansing ordeal, but it is not viewed as a curse or punishment or an expression of Allah’s wrath. Hence, the patient is obliged to seek treatment and to avoid being fatalistic

13. Breast Cancer in UMMC Stage at presentation and race 2008 (442 cases)Early Stage –Stage 1 and 2Late Stage – Stage 3 and 4 Malays 72 Chinese 313 Indians 57

14. Overall Survival – Breast Cancer Overall survival after diagnosis of breast cancer by ethnicity Log rank test Chinese and Malay; p<0.001 Chinese and Indian; p<0.001 Malay and Indian; p<0.001

15. Reasons why women present late • Fatalism • Low health literacy • Belief in alternative therapy as an active form of treatment and a more acceptable option of treatment was discovered. • Lack of individualistic and autonomous decision making, with women playing the role of a dutiful wife and daughter was observed. These components contribute to the decisions made by the women.

16. Who makes the decision? • My younger sister used to scold me, “Why are you doing this?! You have to go and see the doctor.” After that they stopped asking me because they know without my husband permission, I would not go. But it’s just if I do it, I may hurt him. I didn’t want to hurt him. He should have sent me to the hospital earlier. Alternative medicine could and cannot do anything. I accepted to have chemotherapy and surgery after delivering my baby. But my parents took me to see the Chinese physician. I did not think of going. But my mother and my elder sister scolded me.. I was very sad, they also scolded my husband. My husband also had no other choice. So, in order not to let my husband suffer, I wentfor traditional medicine

17. Decision making in Muslim women • In Malaysia, for the Malay women, who are Muslims, the influence of the husbands on decision making appears to be independent of social class and education. • This phenomenon has been attributed to fear of the husband getting another wife if they have a mastectomy. Although Islam allows polygamy "only when no party is compromised" (evidence based on hadith or agreed quotes of the Prophet), men have ignored this ruling.. Much of this is based on culture and myths rather than Islamic practice Sadly, this happens widely and gives others the wrong impression about Islam.

18. "Marry women of your choice, two or three or four; but if you fear that you shall not be able to deal justly with them, then only one or one that your right hands possess. That will be more suitable, to prevent you from doing injustice." (Qur'an 4:3)

19. Culture and religion • In Muslim society, culture and religion is so intertwined that the differences become blurred. • Some Muslim women feel that examination by a male doctor was forbidden and religiously incorrect. • However based on hadith, ‘a woman should seek help from a female doctor. If one is not available, she should seek treatment from a male doctor, with the consent and company of a male family member’. • Some women feel that embarrassment have a greater influence over their health- seeking behaviour than religion or culture:

20. A woman may be treated by a male physician (including treatment or examination of private parts, etc.) only if a female physician cannot be obtained through all means possible, and it is recommended that a mahram male or trustworthmuslim female be present to prevent the occurance of khulwah. (Privacy or khulwah denotes a man and woman's being alone together in a place in which there is no fear of intrusion by anyone else)

21. Muslim women in non-Muslim countries • In non-Muslim majority countries, Muslim women face different obstacles that deprive them of having appropriate access to healthcare. In some cases healthcare providers are unaware of cultural and religious sensitivities. Some Muslim women, for example, prefer to avoid unnecessary close contact with men and prefer female health care providers. There are times when some Muslim women receive no healthcare treatment because they are unable to see a female doctor

22. Myths about women in Islam • The woman’s body belongs to her husband • The husband makes the decision about medical treatment for the wife • The woman needs consent from the husband before any treatment • A woman who loses her breast or other body part is no longer a woman and her husband has the right to take another wife

23. The truth is that any treatment decision should be a mutual agreement between husband and wife • Empowerment of woman regarding her rights is important

24. Conclusion • Empowerment • Education • Advocacy