Forum.
Introduction
Culture is the prism through which we view the world. Cultural perspectives will therefore have a major effect on attitudes to sedation at the end of life – for patients, families and health professionals. In order to examine the impact of culture on any issue, it is important to first clarify what is meant by “culture”. For the purposes of this discussion, “culture” is viewed in its broadest sense.Culture is a “living, dynamic, changing, flexible system of values and world views by which people live, a system by which they define identities and negotiate their lives”,1 and may be applied to an individual, a family, a community, an institution, or any group of people who share a common characteristic such as age, gender, job, disability, place of residence or religious beliefs. It does not necessarily equate with race (which is purely physical) or ethnicity (which includes a psychological sense of belonging). Culture must therefore be viewed in context, as multiple factors may influence the individual or group in a given circumstance.
If culture is a prism, then language is one of the means by which we communicate our views. However, when events may hold a different meaning or significance for different people, we may lack a common language with which to communicate, whether metaphorically or literally. Globally, palliative care has developed mostly within the Western medical model, a scientific model that is arguably “relatively free from religious, ethical and spiritual aspects of the culture in which it is based”.1
In many traditional cultures, however, there is a much less sharp distinction between mind and body, religion and philosophy. In considering the use of sedation at the end of life, as in all aspects of palliative care, a deliberate pursuit of cultural competence is extremely important; this means a need to be aware of, to ask about, to acknowledge and to accept the cultures of the patients, families and staff with whom we work.
Within any cultural group, there is a wide range of similarities and differences in the rituals and meanings associated with illness, dying and death. In general, the most consistent rituals are those related to death. However, in cultures where death has become “more predictable, controllable and less socially disruptive,”2 rituals have become less important.
The use of sedation at the end of life may be related to the cultural background of both patient and staff. In a prospective study, Fainsinger et al(2000) found that sedation rates ranged from 15% of hospice patients in Israel, to 22% in Spain, and up to 36% in South Africa3. There were notable demographic differences between the hospice populations in these three countries, with Spain having fewer female patients than Israel or South Africa; patients in South African hospices were generally younger, with a higher prevalence of AIDS than in Israel or Spain. Most patients were sedated to relieve delirium (range 9 – 23%) although in South African hospices, up to 13% were sedated for the relief of dyspnoea (0 – 2% in Israel and Spain). In Spain, 4% of patients were sedated to relieve family distress. Ethnicity was not recorded as part of the study.
Where the cultures of patient and health professional differ, the patient may lose any sense of control. Gesler and Kearns (2002) describe the concept of “explanatory models” – ideas or beliefs that people use to make sense of their illness and to evaluate possible treatments4. These include both conscious and unconscious knowledge, and often do not agree with explanatory models of clinical staff.
In order to recognise and acknowledge differences in perspectives towards sedation at the end of life, health professionals must have a strong sense of their own cultural identity, including that of their professional role and place of work. They must also have a sufficiently broad and open-minded attitude to enable them to forego ethnocentricity – the perception that their own culture, beliefs and values are superior – in order to accept the explanatory models of their patients, and to work within those models. In comparing the importance to dying American patients, their families and care providers of a variety of factors Steinhauser et al found that 92% of patients rated mental awareness as very important, compared to only 65% of physicians5. From the perspective of their occupational culture, physician’s priorities may differ from those of their patients. This raises consideration of the decision-making process, and the role of patient autonomy.
In New York, where patient autonomy is expected, the decision about the use of sedation at the end of life is a continuous and ongoing process involving patients, families and medical staff6. But in a Spanish survey of the Catalonian palliative care network, less than half of the 23% of patient who were sedated at the end of life were involved in the decision-making process7. Physicians, and sometimes families made the decision for the majority of patients. In this survey sedation was used equally for either physical or psychological distress.
It is not feasible to present a definitive guide to the views of every culture towards sedation at the end of life. Instead, the components of a cultural competence model will illustrate the complexity of variation with reference to a range of cultures, and the need to follow general guidelines that can be tailored to each individual patient and family.
There is a paucity of literature about cultural aspects of terminal sedation. Purnell (1998) has postulated a model of cultural competence that may provide a framework for the determination of patient and family attitudes to palliative sedation8. The relevant aspects of Purnell’s model include:
- Communication
- Family organisation
- Nutrition
- Spirituality
- Healthcare practices
- Healthcare practitioners
- Death rituals.
Communication
Dominant language, style, context, appropriate use of names and greetings, use of eye contact and touch are all important variables. In Asian, Arab, indigenous Australian and Black American groups, non-verbal communication is characteristic. For New Zealand Maori and other Pacific peoples, lack of eye-contact signifies politeness, whereas a steady gaze indicates opposition or conflict; to remain sitting during greeting is a sign of respect, and to stand is a sign of superiority. For American Indians, silence indicates acceptance. A Mexican patient will prefer to discuss symptoms within the family before seeking medical advice, and a consultation involving the whole family is usual. In many cultures, including Spanish, Greek and Japanese, a poor prognosis is not directly discussed with the patient, so that informed consent for the use of sedation at the end of life is much less likely.
Family Organisation
In spite of the Western ethical principal of patient autonomy, for many patients it is preferable to have their significant others involved in care-related decisions. In an American study of patient preferences in communication at the end of life, patients indicated that if they were unable to communicate, they would prefer the wishes of their significant others to override their own advance directives.9
Clarifying the family structure is an important means of strengthening the therapeutic relationship. It is easy to make incorrect assumptions about gender roles, status within the family and within the cultural community. Establishing who is the head of the household or who is the decision-maker may simplify the channels of communication; for some families it is perfectly acceptable for treatment decisions to be made by the family father than by the patient. In many cultures, total family involvement is the norm, and it is important for clinicians to develop skills in group communication.
The role of the elderly also varies widely. While many Western societies focus on youth, in other cultures aged is revered. In Arab society, caring for the aged equates to the worship of God, and the Chinese concept of filial piety includes the unquestioned duty to care for one’s elders.
In situations where the patient is estranged from their family of origin, whether by choice or circumstance, it is important to clarify whom to involve in decision making if the patient is unable to do so. This might include patients incarcerated in prison, those dying of AIDS whose usual family structure has been decimated by the disease as in sub-Saharan Africa, or whose social support structures may be found within the gay or intravenous drug-user community.
Nutrition
The meaning of food in different cultures may help to explain some of the rituals observed amongst families. In almost every culture, the provision of nourishment remains paramount as it is seen as a method of providing care as well as a way to improve health and wellbeing. An exploration of the “need to feed” may lead to creative solutions; for example, herbal infusions supplied by the family may be used for mouth care procedures.
Ramadan, a month-long fast, is an important time for Muslim families, and although Islamic law does not require the very sick to observe the fast, patients may refuse all drugs during this period. Ramadan is preceded by a time for settling disputes and ill-feeling so may be of great significance to a dying patient. Similarly, fasting is common for Hindu patients as they await death (pravrajya) and there may be a reluctance to take any drugs at all.
Spirituality
Spirituality involves the search for meaning, a connectedness with a greater power that may be much broader than purely religious beliefs. Spiritual beliefs vary widely within ethnicities; for many patients and their families, the time approaching death is one of contemplation, with rituals encouraging tasks of personal completion or preparation.
Spanish medical texts define “agonia”, the time preceding death when active dying begins, invasive therapeutic or psychological procedures (which may include sedation) are declined, and the support of relatives is rejected in favour of friends and clergy10. In sub-Saharan Africa, Iran and the West Indies, illness and death may be explained in terms of supernatural forces which must be dealt with in the manner appropriate to the patient.
Bhuddist patients may be more concerned with spiritual pain than physical symptoms, and will desire clarity of mind and time for meditation. They may refuse drugs that might alter perception, although the use of medication in intractable pain is considered acceptable of there is no other way to find peace11. Those who believe in reincarnation, that death is merely a change to another physical body, may simply not want palliation.
For Jewish families, there may be a strong desire to survive, to fight death and preserve life at all costs12. There may be an unwillingness to discuss death or to use drugs that might perceptibly shorten life. The patient is never left unattended, with each visitor praying for mercy on the patient’s behalf. The practice of re-naming the patient is an attempt to avert death. Psalms and prayers are important near the moment of death, and alertness is preferred with the dying patient encouraged to repeat the Sharma.
For the dying Muslin patient there is also a strong need to be able to pray, to have time for contemplation and to surrender to the Will of Allah. Washing with running water is a pre-requisite to prayers, which are offered five times daily facing Mecca. Although analgesia is acceptable, sedation may be rejected in order to retain alertness for prayer.
Sikhs believe in the re-birth of the soul, so acceptance of death is not difficult. However, there is a strong belief in the power of the individual to alter the cycle of re-birth through extreme virtuousness, so attitudes to medications – and sedation – may vary widely. Similarly for Hindu patients, any substance that may result in loss of self-control is seen to impede spiritual progress.
For Christians, impending death may engender great peace – or considerable fear of what is to follow. Country of origin, as opposed to country of residence, will also account for variations as will differences in Christian denominations.
Healthcare Practices and Practitioners
These include traditional practices, self-medication, attitudes to pain and the sick role, responsibility for health, and barriers to healthcare, all within the context of the community of residence. In many cultures, there is a preference for traditional remedies and reluctance to seek orthodox care. Medications obtainable only on prescription in some countries will be available over the counter in others, or via the Internet. Self-medication, or sharing the medications of others, may be considered acceptable and practical. The routes of administration of medication may be significant, e.g. Chinese people favour parenteral rather than oral administration. Samoan people are often strongly opposed to medication and may leave a hospital or hospice in order to avoid drugs. Appalachian, Polish, Italian, and Cambodian populations, amongst others, view stoicism positively, and refusal of medications may result. Puerto Rican males may prefer sedative analgesic medication to help them protect their “macho” image.2
Perceptions of health care practitioner may be important. In Iran, the doctor has ultimate authority; patients are expected to be passive and self-care is not considered. For people of many cultures, older male physicians are perceived as being of higher rank than younger health professionals, and their influence in decision-making may be considerable.
Modesty is an important concept to consider for all patients, and attitudes to sedation may be affected by the degree of trust that culturally appropriate practices will be followed even when the patient is sedated. The gender of professional carers may be important; Japanese and Puerto Rican patients of both sexes prefer to have women providing personal care. The wearing of kacha (undergarments) at all times, even while washing, is essential to Sikh patients. Muslim patients prefer to be cared for by someone of their own gender, as even the baring of an arm for an injection may cause distress. It is therefore essential to reassure patients that these important practices will be continue to be respected even if they are sedated.
The wish for repatriation may also influence the use of sedation at the end of life; patients who strongly desire to return to their country of origin to die may resist sedation in anticipation of travel arrangements. A real barrier to the use of sedation at the end of life is the lack of access to the means by which to achieve it. Rajagopal describes the limited access to sedating medications in India, where palliative care is in its infancy and where there is little distinction made, by public perception and even by many health professionals, between sedation and euthanasia13. Maddocks describes similar situations in other Asian countries, including Myanmar and Korea.14
Death Rituals
The rituals surrounding death reflect the meaning of death to different cultures and societies; is death seen as a failure of medical science, a part of the circle of life, or the ultimate liberation?
Indigenous Australians have specific rituals requiring absolute privacy, in which tribal secrets are passed on; alertness is therefore paramount15. Muslims may wish to face Mecca and to recite passages from the Holy Qua’ran.
The place of death may also influence the use of sedation. Japanese patients prefer to die in hospital16 but will often visit their homes prior to death; however, this pattern may be changing with the introduction of hospice home care17. Indigenous Australians may prefer not to die at home, since the family must leave the place of death15. Black Americans do prefer to die at home, as do sub-Saharan Africans, Vietnamese, and many others. Some cultures care for their dying within their communities; others prefer to die in relative isolation.
Culture of Carers
The culture of those who provide professional care plays an important role in end-of-life decisions. Age, gender, religious or spiritual beliefs and ethnicity are as significant for health professionals as they are for patients, within the context of the dominant culture. The interpretation of intolerable physical or emotional distress as an indication for sedation at the end of life might be considered a perspective specific to some health professionals, and not necessarily shared by patients, families or other professionals, such as chaplains or others providing spiritual guidance who may have a different view of such distress. In a Finnish study, Hinka et al emphasized the importance of advance communication between physicians, patients and families in order to make decisions based on patient preferences rather than the physician’s own values18.
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