Autonomy, disclosure and authority with reference to South Asian patients and families
“They look after their own’<br />‘We know best’ <br />Autonomy, disclosure and authority with reference to South Asian patients and families.<br />Shirley Firth<br />During my research into the way British Hindus dealt with death and bereavement, I was struck by constant references to a good death. Research into Sikh attitudes, beliefs and practices showed a similar desire for a good death. This is a prepared and conscious death, which implies that the dying person has to know that death is imminent. But since the death is ideally located in the heart of the family, it also implies that the family knows, and is prepared to help the person deal with unfinished business and facilitate the correct rituals and prayers. <br />However, it became apparent that in the UK there are often three dilemmas. <br /><ul><li>The first is a conflict of interest between the needs of the dying person to prepare for death, and relatives who fear that such knowledge may cause to give up hope and die too soon.’
The second dilemma is the one confronting professionals in the UK, between the desire to respect patient autonomy, and to discuss the prognosis and treatment directly with the patient, whereas relatives may believe that it is their duty and obligation to the patient to protect them from knowledge which might prove harmful and cause them to die prematurely.
The third dilemma is the ‘they care for their own’ syndrome – an assumption by many hospital physicians and GPs, including Asian ones, that the patient is part of an extended or joint family who can take full responsibility. This affects the decision whether or not to refer the patient to hospice or palliative care. However, there may not be an extended or joint family, lack of knowledge about services or local support.</li></ul>The first dilemma is not unique to South Asians. Relatives in any culture may prefer not to tell their sick relative of their prognosis, even though the patient may be aware that death is forthcoming – you will no doubt have come across cases of collusion, e.g. between a husband and wife, when both ‘know’ but want to protect the other. Yet there are advantages in patients being aware that they are going to die, to be able to complete unfinished business, deal with damaged relationships and spiritual issues (Dein and Thomas 2002<br />Good deaths<br />In Medieval times, in Europe, the ‘ars moriendi’, the art of dying, was a prepared death, with the appropriate Christian rituals (Ariès. 1976). Indeed, today, the ideal of palliative care aims for providing spiritual as well as physical, psychological, social care <br />For Hindus and Sikhs, a good death is a conscious death, which has been anticipated and prepared for. Detachment from worldly concerns with the mind focused on God is important in all theistic traditions. The distinction between good and bad deaths is related to control and choice over the manner, time and place of death, and includes suicides, violent and premature deaths. (Bloch and Parry (1982)<br />This important concept assumes the individual knows he or she is dying and undertakes, where required, rituals of purification, says goodbye to loved ones, and deals with unfinished business of various kinds. In South Asia, the ideal place to die is in the home, surrounded by the family.<br />Models of a 'sacred' death are connected to a holistic perspective of mind, body and spirit/soul, and a firm belief that death is just a transition to another life. This provides cognitive and emotional meaning, enabling both the dying and their relatives to make sense of suffering and death. This also influences whether to accept mind-clouding medication at the end of life (which can cause anxiety to nursing staff).<br />Many of my Hindu informants in India and Britain described relatives who knew the exact time they were going to die, called for their family, and prepared for it by bathing, and or reading texts and prayers. A ninety-nine-year-old Gujarati called his sons and daughters the previous day, and then announced that he would be leaving this world the next morning at 6:00 a.m. He bathed and lay down on a purified floor. He said he did not need anyone to read the Bhagavad Gita, because "
It has gone through my mind throughout my life.” As he was dying he asked, laughing very loudly, “Do you want me to carry a message to the next world? To whom?” Then he died, chanting the name of Rama. (Firth 1997). Dying with the name of God, Sat Guru in the heart, on the lips, and said in the ear, is equally important for Sikhs. A model of a good death was demonstrated by Guru Amar Das:<br />“Listen O my Sikhs, my children and Siblings of Destiny; it is my Lord's Will that I must now go to Him”….<br />“O my children, siblings and family, look carefully in your minds, and see. The pre-ordained death warrant cannot be avoided; the Guru is going to be with the Lord God.” <br />The True Guru…. sat up and summoned His family. “Let no one weep for me after I am gone. That would not please me at all. When a friend receives a robe of honor, then his friends are pleased with his honor. <br />Finally, the True Guru said, "
When I am gone, sing Kirtan in Praise of the Lord. Do not bother with offering rice-balls on leaves, lighting lamps, and other rituals like floating the body out on the Ganges……<br />GGS, translated by Dr. Kanwaljit Kaur Singh from the Guru Granth Sahib<br />For most, a good death located in the sacred space of home, whereas hospitals are profane, somewhere to get better. In South Asia, relatives care for patients. They provide food according to caste or religious requirements, help with the physical care of the patient and keep a constant watch throughout the illness. Then many hospitals in India send patients home when death is imminent (Firth 1997), which makes explicit the knowledge that the person is dying. For Hindus and Sikhs this might mean laying the person on the floor, placing Ganges water, or for Sikhs, Amrit in the mouth, and saying prayers, and farewell. Gardner’s study in London’s East End shows that death is inherently social rather than an individual or medical event (Gardner 1998). The family protects a person, helps in times of trouble and is involved in a set of mutual duties, responsibilities and benefits. Boyle comments that ‘In Asian relationship-centred cultures, the concept of symbiosis-reciprocity is typified by an intense emotional connectedness and interdependence among members of the closely knit extended family system.’ (1998) <br />The bonds are emphasized and strengthened by religious practices and rituals, particularly the death rites which are a fundamental duty, and "
glue the group together at precisely the time that it is most threatened"
' (Walter 2003). <br />However, that close bond can be threatened in the diaspora, with separations and social mobility meaning that the support system may be much more fragile than in the Subcontinent, or totally absent. The traditional South Asian family is hierarchical - it has a structure based on the authority of the eldest man and then the older sons. This, Kakar says, has “an eternal verity and moral imperative” (p.117). Because of this powerful bond, the person who separates from it through migration or death may experience profound “psychic stress and heightened inner conflict”(Kakar p.121). The following case study illustrates the first dilemma, but also Kakar’s observation about the devastation the death of a parent can have on someone in the Diaspora, who feels cut off from his or her roots. <br />A Gujarati man, Ramesh, was told by the family GP, a Hindu, that his father, Suresh, only had about 6 months to live, as he had prostate cancer which had not responded well to treatment, and he developed TB. Ramesh couldn’t take the delegated responsibility to be open with his father, but devotedly cared for him over eight months of intermittent periods of hospitalisation and surgery. Suresh, was clearly aware that death was near, preparing by reading religious books, making gifts, and detaching himself from the family. He lay on the floor a couple of times, and was promptly put back by the nurses. Ramesh didn’t see this as a sign that the father was dying, and Suresh colluded with Ramesh's inability to face the fact. The hospital staff continued to be reassuring about Suresh’s condition, and told Ramesh to take a break. He was thus away at the moment of death and failed to honour his sacred debt by performing the last rites, hearing his father's last words, and saying goodbye. He was devastated. "
The only good thing is that he died peacefully. I still feel guilty because I wasn't there. It is very hard to accept Hindu teaching that the time of death is predetermined"
He regretted bitterly his father died alone, and that he had failed in his duty to his father. <br />What makes this more difficult for professionals, as Haley comments, is that <br />While desiring to protect the patient, relatives may have their own agenda to prevent death (separation fears, etc.). ‘Patients who have been suffering the disease do not necessarily share the same evaluations of quality of life with their family members…[they may be] at different stages on the continuum between denial and acceptance. (Haley 2002)<br />Dilemma 2. Talking about death <br />Palliative care professionals may be confronted by moral dilemmas over issues of truth telling and disclosure with some minority ethnic patients and families. Chattoo et al. observe that the <br />discourse of palliative care as represented in the literature invokes a prescriptive culture of dying in terms of open awareness and a 'new regime of truth ' …with fixed scripts for the patient and the family for 'coping' and mourning. Any deviations from the script are easily dubbed as 'denial', while some are perceived as being 'at risk' for mourning (2002: 16) .<br />However, it is important not to rely on an ethnocentric perspective about the ‘right’ approach to disclosure. Chattoo et al. note, "
qualitative literature conducted across countries reveals a subtle tension between the varying needs for information and desire to maintain hope through avoidance of 'unsafe information"
. In 'familial' cultures, relatives, including South Asian, Chinese, Japanese, Southern European and Latin American, expect to make decisions on the patients’ behalf. Doing good consists in protecting the patient from the truth so that they do not give up hope; this overrides considerations of patient autonomy and the right to know, but is in keeping with their understanding of the principles of beneficence, non-maleficence, fidelity, respect and justice (Werth et al 2002). Gardner suggests that issues of control are not just ones of paternalism but include<br />deeply held beliefs surrounding individual choice and 'rights' [which] come up against not only the practical issue of language, but also beliefs concerning the primacy of the family, gender relations, and Bengali [and other S. Asian] ideas of appropriate treatment for the dying” (2001:242).(My italics)<br />Some people, such as some Chinese, may fear that speaking about death will bring it about (Boyle 1998). Gordon and Paci, (1997) found Italian patients wished to be informed of their diagnosis, but not prognosis, living in fluctuating states of knowing and not knowing. "
The refusal to discuss the illness has the consequence of isolating people, but it protects the “social group from the threat of separation or of openly confronting suffering” (1997:1452). Some studies suggest that patients know more than their relatives would know or wish, and there may be control issues (Ng. 2000)<br />Staff may be asked to withhold information from the patient (Karim et al 2000; Spruyt 1999). Yet in a Birmingham study of minority ethnic communities, "
It was commonly agreed that knowledge was better, so that the individual could make his or her preparation ('make a will', 'get religious') and the family could offer them a good time and make them 'as happy as possible' during their last days, weeks or months. (Johnson et al 2002: 28). Chattoo et al. (2002) found the culture of 'closed awareness' was blamed for low referrals, yet they found only two out of 37 South Asian patients were unaware of their own diagnosis. <br />Professor David Field comments: <br />The core message, surely, is that staff should not presume either that full disclosure is appropriate nor that concealment of prognosis is appropriate but – as with other patients – this must be established with the patient and their lay carers. (personal communication in Firth, 2001:65) <br />It is important to be aware of the cultural and social context of each patient and family, to find a balance between respect for patient autonomy, and the need to preserve social cohesion and respect for their cultural and religious tradition. Truth-telling takes immense sensitivity, to create the minimum of distress and allow the persons concerned to comprehend what is being said. Buckman (2000) shows that disclosure is often made abruptly and insensitively – it can be an intellectual position, without real understanding and empathy. Interpreters, linkworkers and advocates, as well as healthcare professionals, need training in breaking bad news (below). Jones comments that healthcare providers must recognise that the basic values, principles and assumptions of western medicine and bioethics are themselves historically situated and culturally determined. <br />The rights of families to medical knowledge and their roles in decision-making are just as valid, inalienable and crucial to the cultural belief systems of many ethnic minority communities as patient autonomy models are to Western patient autonomy models."
(2003:11) <br />Dilemma 3 ‘They care for their own’ syndrome <br />This brings me to the third dilemma – the ‘they care for their own’ syndrome. While there may be many reasons for a low take-up of hospice and palliative care services by South Asians, there are still (a) low rates of referrals by some doctors who assume the members of the community ‘care for their own’. Others, in my experience, believe that a hospice is largely geared for ‘white’ patients and may not be suitable, which may or may not be true in individual cases. This is even true of South Asian doctors, who may have come to Britain to study and work, but not be familiar with the social, class and economic situations of their patients. Unless there has been an effective outreach programme, such as at Acorns Children’s hospice, people may not know about available services and assume that hospices are where ‘white people go to die’ (Notta and Warr, 1998; Karim et al. 2000; Firth 2001; Simmonds et al. 2001). The film, Humara Safar (2003), was an excellent example of educating the Asian community, made by South Asians, SAPCAA, in Birmingham but may no longer be available.<br />The ‘Hospice at home’ service may be ideal, but difficult to provide if there is not an adequate support system at home. In addition, many South Asians feel shame in asking for help from friends and family if the illness, such as prostate or uterine cancer, is stigmatising. There may also be shame and a loss of honour in asking for help from Palliative Care Services or Social Services, even if there is little support in the family and neighbourhood. If the wife is ill, the husband may have no domestic skills to take care of her and any young children. But women are more vulnerable, as they may not know where or how to get financial or other help, particularly if they don’t know English. A young wife caring for a much older husband, may have to depend on children who have to leave school to help (Firth 2001, Spruyt 1999), and an elderly patient may expect to be cared for by family members, especially the son’s wife, and resent outside assistance. <br />Communication is cited frequently as a problem in providing appropriate care for minority ethnic patients (Hill and Penso, 1995, Firth 2001, Randawa et al, 2003; Johnson 2001; Chattoo. 2002). For example, there can be real problems of finding out what women patients want if there is never an opportunity to talk to them without other family members present. The use of children as interpreters is unfair on both parent and child, and violates appropriate boundaries. Husbands or members of the community may tell both the wife and the medical staff what they think rather than what the patient and doctors say or need to know, but like children, may be unfamiliar with medical terminology. Local community members are not satisfactory as interpreters, as it is feared (often with good reason), may gossip. The ideal is to have properly trained patient advocates or link-workers, from the different ethnic communities, who can break bad news in an appropriate way, translate accurately, and can explain unfamiliar terminology, such as ‘brain dead’ and other medical terms.. (Firth 2001) <br />The Challenge for Professionals:<br />Blakemore and Boneham (1994) point out that the medical staff, whether or not they come from minority ethnic groups, are equally products of their culture and not just rational, impartial or, <br />'affectively neutral' actors in relationships with patients, while the patients themselves are pictured as the ones bringing to the encounter emotion, pain, values and particular cultural attitudes - whether they are English, Welsh, Cypriot or Sikh. Yet we know, from sociological research ... that doctors have been observed to behave quite differently towards patients with the same kinds of medical condition as a result of the doctors' assessments of the social worth, personal behaviour or ethnic group of each patient. (Blakemore and Boneham 1994:105.)<br />Vyedelingham found that nurses <br />‘tended to locate western culture as superior and rational, but also located the south Asian patients’ culture as inferior, bizarre and irrational. [His study] shows how white people occupy hegemonic positions that enable them to maintain that what they say is neutral or unsituated [and] human… (2006)<br />Professionals may be challenged by difference, but it is important not to ‘otherize’, seeing people who appear to be different or behave in different ways as ‘other’, and attributing problems to ‘culture’ or blaming the victims. Hern et al, say that ‘It is vital to remember that culture is not simply an inconvenient barrier to a rational, scientifically based healthcare system, a feature of ‘ethnic others’’ (1998). Nor should we assume an ‘implied homogenous ‘British white culture’ to which a variety of ‘other cultures’ have been added. These too, tend to be seen as homogeneous and fixed categories’ (Culley1996.) Gunaratnam’s concept of referential grounding recommends placing oneself in the shoes of the other person, and finding common aspects of experience (Gunaratnam et al. 1998). This means being self-aware, and examining one’s own unconscious stereotyping and racism or prejudice, as it is difficult to recognize that remarks we think are innocuous may be interpreted by the patient or relatives as racist (Leininger 1996). Care givers should be encouraged to “read’ patients, as opposed to thinking about culture as a demographic variable that predicts specific behaviours” (Boyle, 1998)<br />The concepts of cultural competence (Leiniger 1998), and cultural safety (Ramsden 1990) move beyond practical skills to attitudinal change. They denote skills and knowledge which accept “the legitimate values, beliefs and behaviour patterns of people who are from another ethnic group” (Alexander 1999), which transcend language, ethnicity, culture and upbringing, and insist on empowering the ethnic minorities themselves to be involved in the development of culturally safe practice in partnership with the majority community (Coup 1996). b Thus cultural safety aims to provide care which will “recognise, respect and nurture the unique cultural identity [ ] and safely meet their needs, expectations and rights”. (Polaschek 1998, cited in Oliviere, 1999)<br />This includes the roles of the professionals. Patients may feel powerless and vulnerable, partly because their condition creates pain and fear, but also because of the authoritarian role of the medical staff, especially in a hospital setting. Communication and language difficulties exacerbate this. Blakemore and Boneham comment: "
When the patient may feel stigmatised or unwanted, or is actually treated as such by hospital staff, the distress and bewilderment which often accompany hospitalization can be doubled."
(Blakemore and Boneham 1994:105.)<br />In a cross-cultural context, communication difficulties are exacerbated by different expectations, non-verbal signals, gender attitudes and different use of language and metaphors, requiring some knowledge of the patient’s cultural background. Western doctors also have to be aware, of the different metaphors which may be used to describe both psychological and physical conditions, but of the possibility that psychological distress may be somatised so that depression may not be recognised. Kleinman 1986; Ineichen 1993) However, this has been challenged as too simplistic by some writers, who point out that patients may try to communicate in ways they believe to be acceptable to the doctor, and that both the patients and the professionals may be influenced by racism. Asian doctors themselves may not show adequate respect to Asian patients, especially if they are of a different caste or faith.<br />Searight and Gifford suggest the patients are asked questions which allow them to make their own choices, such as:<br />“Do you prefer to make medical decisions about future tests or treatments for yourself, or would you prefer that someone else make them for you?”When speaking to relatives, they suggest the relatives are asked whether they understand the treatment options, and also enquire about the way the family and religious faith view serious illness and treatment. They also suggest, sensibly, but possibly not always practically, whether the patient and family would prefer to talk to someone of their own background.This kind of gentle approach to finding out what it is the patient and his or her family want, is not just important for minority ethnic patients – it is important for all patients. I’d like to conclude with a quotation from an African American man, which makes the point:<br /> ‘Getting to know you’ is critical to treating patients, of any race or culture, with respect and empathy. There is a wonderful quotation from a black American patient, which I’ll close with, which perhaps sums this up:<br />Well, you know, you got to find out the identity of a person to even get to know them. I think that’s a big ‘if’ right there. Because if you don’t know a person, you got to find out his identity, go where he lives, where he goes, where he was born, who’s in his family. And he’s got to open up and tell you these things. Because the more you know about this person, his family, then that’l make you know more about you.<br />References<br />Alexander, Z.,1999, Study of Black Asian and Ethnic Minority Issues, Department of Health.<br />Ariès. 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