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Disclosure of terminal illness to patients and families: diversity of governing codes in 14 Islamic countries
  1. Hunida E Abdulhameed1,
  2. Muhammad M Hammami1,
  3. Elbushra A Hameed Mohamed2
  1. 1Center for Clinical Studies and Empirical Ethic, King Faisal Specialist Hospital & Research Center, Riyadh, Saudi Arabia
  2. 2Legal Affaires Department, King Faisal Specialist Hospital & Research Center, Riyadh, Saudi Arabia
  1. Correspondence to Muhammad M Hammami, Center for Clinical Studies and Empirical Ethic, King Faisal Specialist Hospital & Research Center, P.O Box #3354 (MBC 03), Riyadh 11211, Saudi Arabia; muhammad{at}kfshrc.edu.sa

Abstract

Background The consistency of codes governing disclosure of terminal illness to patients and families in Islamic countries has not been studied until now.

Objectives To review available codes on disclosure of terminal illness in Islamic countries.

Data source and extraction Data were extracted through searches on Google and PubMed. Codes related to disclosure of terminal illness to patients or families were abstracted, and then classified independently by the three authors.

Data synthesis Codes for 14 Islamic countries were located. Five codes were silent regarding informing the patient, seven allowed concealment, one mandated disclosure and one prohibited disclosure. Five codes were silent regarding informing the family, four allowed disclosure and five mandated/recommended disclosure. The Islamic Organization for Medical Sciences code was silent on both issues.

Conclusion Codes regarding disclosure of terminal illness to patients and families differed markedly among Islamic countries. They were silent in one-third of the codes, and tended to favour a paternalistic/utilitarian, family-centred approach over an autonomous, patient-centred approach.

  • Medical ethics
  • ethics code
  • disclosure
  • terminal illness
  • Islamic countries
  • law

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Introduction

Medical ethics is taking an increasing interest in the decision-making role of social structures, such as the family and community.1 One of the ethical dilemmas clinicians face concerns informing patients about their terminal illness,2 an incurable disease that is reasonably expected to result in death within a relatively short period of time. Disclosure of such information to the patient can be considered harmful by the physician and/or patient's family.3 On the other hand, not telling the patient the truth or revealing it to the family without his/her permission infringes on patient's rights of autonomy and confidentiality. Which philosophical approach should take precedence: the rights approach (autonomy) or utilitarianism approach (beneficence)? Further, as it may be difficult to remove the patient from the context of his/her caring family, should physicians' mindset be patient-based or patient's-family-based?4 5

The Islamic religion is one of the fastest-growing religions with 1.57 billion Muslims worldwide6; many followers live in countries where the majority is non-Muslim. Moreover, with increasing globalisation, there is a growing need for knowledge of, sensitivity to and competence in various cultures. Although in almost all Islamic countries, Islam is a/the source of ethics/regulations, ethical norms may be affected by local cultures and traditions as well as by Western and Eastern influences. Physicians can consult a variety of sources for moral guidance, such as religion and professional role models; however, they need a clear system that can be incorporated into their daily practice. Codes of medical ethics are meant to provide clear guidance consistent with culture norms.

We reviewed sections related to disclosure of terminal illness in codes of medical ethics from 14 Islamic countries. We found that they have marked diversity, that one-third is silent, and that in general they favour a paternalistic/utilitarian, family-centred approach.

Methods

We searched for codes of medical ethics in Islamic countries using Google and PubMed in April 2008 and in July 2009. The search strategy used the following terms: medical codes, medical laws, medical professional conduct, terminal illness disclosure, physician duties, medical regulation, medical ethics, medical association, medical regulatory bodies and practice of medicine. We also hand-searched the reference section of electronically identified articles to identify any relevant articles missed by electronic search. The search included documents in Arabic, English and French. Documents written in Arabic and French were translated to English by one of the authors (HEA). All codes identified were analysed.

The name of the issuing authority, identification number, language of the document and year of issuance were recorded. Sections of the codes that were judged to address disclosure of terminal illness (a disease that cannot be cured and is reasonably expected to result in death within a relatively short period of time) to patients or to their families were abstracted (available as a supplemental file) by one of the authors (HEA). The located codes were classified independently by the three authors: (1) in regards to disclosure to patients as silent, mandates disclosure, allows concealment or prohibits disclosure; and (2) in regards to disclosure to families as silent, mandates (if terms such as ‘must’, ‘should’ or ‘have to’ were used)/recommends (if terms such as ‘preferable’, ‘advisable’ or ‘recommended’ were used) disclosure, allows disclosure or prohibits disclosure. Areas of classification controversy were less than 10% and were resolved by discussion among the three authors.

Results

We were able to locate codes from 14 Islamic countries (table 1). For the sake of comparison we also reviewed three Western codes (USA, Canada and UK), one international code (World Medical Association) and one Islamic code (Islamic Organization for Medical Sciences (IOMS)). The Islamic countries' codes identified were from 12 Arabic and two non-Arabic countries. Fifty-seven per cent of the codes were written by medical regulatory bodies (Egypt, Iraq, Jordan, Qatar, Syria, Sudan, Pakistan, Malaysia) and the rest were created by presidential (Lebanon, Yemen, Tunisia, Algeria), amir (Bahrain) or royal resolutions (Saudi Arabia). Dates of issue ranged from 1972 to 2005. The International Islamic Code for Medical and Health Ethics was published in 2004 by the IOMS.

Table 1

Medical ethics codes reviewed

Disclosure to the patient

As shown in table 2, the codes were diverse. Seven (50%) allowed concealment, five (36%) were silent, one mandated disclosure and one prohibited disclosure. The IOMS code was silent. When concealment was allowed, it was usually left to the physician to decide what was best for the patient, and it became mandatory (or recommended) to inform the family when the patient is not informed.

Table 2

Disclosure of information to terminally ill patients in the codes of 14 Islamic countries

Disclosure to the family

As shown in table 3, the codes were also diverse on this issue. Five codes (36%) were silent, five (36%) mandated/recommended disclosure and four (28%) allowed disclosure. The IOMS code was also silent. When disclosure was mandated, recommended or allowed, it was usually with the provision that there was no known patient's objection.

Table 3

Disclosure of information to the family of terminally ill patients in codes of 14 Islamic countries

Discussion

The main aim of this study was to explore the similarities/differences in addressing disclosure of terminal illness among medical codes of Islamic countries. We identified 14 codes and found that they had marked diversity (ranging from mandating to prohibiting disclosure to patient), that one-third was silent, and that, in general, they favoured a paternalistic/utilitarian, family-based approach (50% allowed concealment from patient, one prohibited disclosure to patient and 36% mandated/recommended disclosure to family). We were not able to retrieve all the codes in Islamic countries, so the reviewed codes may not provide good representation. However, our main conclusion of codes diversity should remain valid. None of the codes gave a formal definition of terminal illness: the codes had to be interpreted by the authors. Finally, the study was limited to disclosure of terminal illness; related issues such as withdraw of life support and doctor-assisted suicide were not examined.

In the first half of the 20th century, treatment displaced prognosis as the clinical skill accompanying diagnostic skill.7 Nevertheless, interest in prognostication has since been renewed8 and the use of the term ‘terminal illness’ has been popularised. Clinicians in general have little difficulty in estimating prognosis; although they consistently overestimate survival, their predictions are highly correlated with actual survival and are more accurate closer to the date of death.8 However, they often have difficulty in disclosing terminal illness information, out of fear of disappointing the patient/family, instilling false hope or being perceived as inadequate. An even more challenging decision to clinicians is whether to disclose the information to the patient, or to conceal it from the patient and disclose it to the family instead. Such a decision may be informed by the following. (1) The impact of the truth on the patient depends largely on how it is told. The patient can be prepared by choosing the right time, revealing the news gradually, showing empathy and concern (we will continue to do our best), concentrating on what is more distressing to the patient (pain, discomfort, death, and so on) and softening the news (nobody knows exactly, healthy people die for non (or unknown)-medical reasons, life doesn't end here, you have a chance to put your affairs in order, an opportunity that a lot of people don't have). (2) It may be impossible to conceal the information from the patient. (3) The clinician–patient relationship is based on honesty, trust and respect for the patient's autonomy as well as beneficence to the patient. (4) Disclosure to the patient would improve trust in physicians in general and relieve the family from the burden of breaking the bad news. (5) The majority of patients' relatives who don't want the patient told would themselves wish to know if they developed the condition.3 (6) Disclosure to the patient may cause undue distress and even suicide.3 Patients react differently to being told that they have a terminal illness.

The decision to disclose terminal illness information is complex but usually centres on disagreements about the limits of paternalism (on part of the physician and/or the family) and the proper balance between the physician's duty of beneficence to the patient and the patient's right to autonomy and confidentiality.9 The Islamic religion is considered to be a culture and philosophy that shapes the lives of Muslims and differentiates them from other faiths and cultures.6 One would expect a large degree of consistency among cultures in which the same religion plays a significant role in guiding values and beliefs. Thus our finding that the codes differed markedly among Islamic countries despite having Islam as a/the source of ethics/regulations is rather unexpected. This diversity may be due to different interpretation of Islamic doctrines, which is consistent with the observation that one-third of the identified codes as well as the IOMS code were silent on the issue. However, it is more likely that the diversity is due to the codes being based on traditions and local cultures rather than purely religion. The time when the codes were written may also have a role since they reflect cultures and cultures are not necessary stable. In the USA, 90% of clinicians preferred not to disclose cancer diagnosis to their patient in 1961 compared with 3% in 1977.10 It is of note that some of the ‘paternalistic’ codes are rather old (1972 for Jordan, 1978 for Syria, 1985 for Iraq). Several cultural reasons in favour of autonomy-based, patient-centred approach have been identified, including improved public education, a strong tradition of privacy and personal liberty, a distrust in authority, and loosening of family and community identification.11

We found that in comparison to some of the prevailing Western codes, codes in Islamic countries tend to favour a paternalistic/utilitarian, family-centred approach rather than an autonomous, patient-centred approach. For example, the USA code mandated disclosure to patients and the Canadian and World Medical Association codes prohibited disclosure to the family. A paternalistic attitude towards truth-telling in medicine is dominant in Far Eastern cultures,12–15 influenced by the philosophies of Confucianism and Taoism, as well as in Middle Eastern cultures.3 6 16–18 In these cultures, terminal illness is usually disclosed to the family not to the patient: the sick are often cared for at home rather than in institutions, family bonds are so strong that they would rather not share the bad news with their loved one, and patients prefer not to be informed of a terminal illness—rather they willingly relinquish their right to autonomy.9 In contemporary Western cultures, ethical issues in medicine have evolved around the principle of patient autonomy. This principle asserts the rights of patients to be informed of their diagnosis, prognosis, and the risks and benefits of therapies, and to be allowed to make informed decisions.

Based on Islamic teaching we think that the default should be to disclose the information to the patient. This is based not only on the autonomy principle, which is very clear in Islam (‘There shall be no compulsion in [acceptance of] the religion. The right course has become clear from the wrong’ (The Holy Quran, chapter 2, verse 256)), but also on the principle of beneficence. First, for Muslims, death marks the transition from one state of existence to the next.19 Death is therefore something to be accepted as part of the overall divine plan: ‘And certainly did We create man from an extract of clay. Then We placed him as a sperm-drop in a firm lodging. Then We made the sperm-drop into a clinging clot, and We made the clot into a lump [of flesh], and We made [from] the lump, bones, and We covered the bones with flesh; then We developed him into another creation. So blessed is Allah, the best of creators. Then indeed, after that you are to die. Then indeed you, on the Day of Resurrection, will be resurrected’ (The Holy Quran, chapter 23, verses 12–16). Further, death is not a taboo subject in Muslim society19 and is a matter upon which one is encouraged to reflect frequently: ‘Indeed, you are to die, and indeed, they are to die’ (The Holy Quran, chapter 39, verse 30). Furthermore, Islam makes it clear that matters are in the hands of God, when death comes, no one can escape it, nor can anyone hasten or delay it: ‘Say, “I possess not for myself any harm or benefit except what Allah should will. For every nation is a [specified] term. When their time has come, then they will not remain behind an hour, nor will they precede [it]”’ (The Holy Quran, chapter 10, verse 49). Moreover, Muslims are expected to always praise God for any events, good or tragic encountered during their lives and to accept bad news with patience and prayer and submit their will to God: ‘Who, when disaster strikes them, say, “Indeed we belong to Allah, and indeed to Him we will return”’ (The Holy Quran, chapter 2, verse 156). These beliefs should lessen the impact of the news of terminal illness on the patient. Second, Islam strongly recommends that Muslims should prepare a will: the information expected to be found in the will includes a list of people who will be at the bedside during dying, the people who will prepare the body for burial, pray for the deceased and follow the coffin to the grave, gifts and charities to be spent after death, previously concealed information and special arrangement for loved ones. Muslims would prefer to die at home surrounded by family members.6 19 They have to seek forgiveness for excesses they have committed, to clear their financial debts and to seek forgiveness from God. These benefits would be forfeited if the patient is not informed and dies not being able to prepare for his/her impending death. There may be two main situations in which the clinician would override the default of disclosing terminal illness to the patient: if he has a compelling evidence that disclosure will cause significant and predictable harm that can be otherwise avoided or if the patient gives informed consent not to be told the truth.9

An important aspect of promoting culturally competent medical care is the careful examination of religious faiths. Clinicians must consider the cultural needs of the patients, family and community.6 20 21 Although they are obliged to deal with their patients according to the laws of the country where they practice, they should have knowledge, sensitivity of and competence in their patients' culture. This is particularly important when religious groups are spread worldwide as is the case for Muslims.20

In conclusion, we found that codes regarding disclosure of terminal illness to patients and families differed markedly among Islamic countries, suggesting significant non-religion and traditional influences and absence of a clear unified Islamic ruling, one-third of the codes was silent, and the codes in general tended to favour a paternalistic/utilitarian, family-centred approach over an autonomous, patient-centred approach.

References

Footnotes

  • Competing interests None declared.

  • Ethics approval This study was conducted with the approval of the Office of Research Affaires, King Faisal Specialist Hospital & Research Center.

  • Provenance and peer review Not commissioned; externally peer reviewed.