Culture, Religion and Truth Telling at the End of Life
Culture, Religion and Truth Telling at the End of Life
Truth telling, a cardinal rule in Western medicine, is not a globally shared moral stance. Honest disclosure of terminal prognosis and diagnosis are regarded as imperative in preparing for the end of life. Yet in many cultures, truth concealment is common practice. In collectivist Asian and Muslim cultures, illness is a shared family affair. Consequently, decision making is family centred and beneficence and non-malfeasance play a dominant role in their ethical model, in contrast to patient autonomy in Western cultures. The 'four principles' are prevalent throughout Eastern and Western cultures, however, the weight with which they are considered and their understanding differ. The belief that a grave diagnosis or prognosis will extinguish hope in patients leads families to protect ill members from the truth. This denial of the truth, however, is linked with not losing faith in a cure. Thus, aggressive futile treatment can be expected. The challenge is to provide a health care service that is equable for all individuals in a given country. The British National Health Service provides care to all cultures but is bound by the legal principles and framework of the UK and aims for equity of provision by working within the UK ethical framework with legal and ethical norms being explained to all patients and relatives. This requires truth telling about prognosis and efficacy of potential treatments so that unrealistic expectations are not raised.
Death is an inevitable and frequent event in the renal setting. Prevalence of end-stage renal disease (ESRD) in Europe in 2009 has risen to ~932 per million population, carrying with it a 5-year survival probability of 48%. Furthermore, the incidence of ESRD is increased 3- to 4-fold in a number of ethnic minority groups. This disproportionate burden of ESRD among ethnic minorities has in part been attributed to an increased incidence of hypertension and diabetes, susceptibility to the development of diabetic nephropathy and to that of tuberculosis.
London for example, typified by its multicultural society and population, has a resident non-UK born population of ~40%. Almost two-thirds (63%) of all migrant Londoners are from BAME (Black, Asian and Minority Ethnic) groups; they also comprise one-fifth (22%) of London's UK-born population. Around 50% of patients on renal replacement therapy in London are from ethnic minorities, predominantly South Asian. With such a diverse population, encounters between patients and physicians of different backgrounds are common and often challenging. Both patients and physicians bring to the clinical encounter their own languages, explanatory illness models, religious beliefs and ways of understanding the experience of suffering and dying. This is particularly pertinent in the renal setting where the high mortality associated with ESRD demands nephrologists to frequently engage in end-of-life discussions with their patients and their families.
As the speciality of palliative care has advanced, many have issued calls to recognise it as a fundamental human right. As contentious as these calls are, there is little disagreement on the benefits palliative care provides. For many patients, recognising the end of life facilitates meaningful advance care planning discussions, enabling strengthening of interpersonal relationships and control of their illness, so as to achieve the best quality of life for the patients and their families and, ultimately, to attain a good death. Renal palliative care has become increasingly recognised, as the significant morbidity and mortality associated with ESRD and renal replacement therapy are acknowledged and as concerns grow regarding the futility of treatment leading to prolonged dying and needless suffering. Joint annual educational palliative care and renal meetings, as well as the publishing of literature providing guidance to aid nephrologists in facilitating as good a quality death as possible, are important milestones.
Truth telling to competent patients is a cardinal rule widely affirmed in Anglo-American medical practice. For example, truth telling has been encouraged by the Gold Standards Framework in the UK primary care setting as a necessary component of the care of the dying, enabling a point of entry into palliative and end-of-life care. This moral (ethical) stance, however, is not echoed worldwide, nor has it always been so in the West historically. Paternalism and beneficence were the overarching principles underpinning medical ethics at the start of the twentieth century. Subsequently, respect for autonomy became the salient ethical principle influencing Western thought, and hence, deception became the epitome of unacceptable physician paternalism. In failing to provide the truth, physicians deny patients the right to exercise their autonomy. Explaining the truth about diagnosis, prognosis and treatment options generates the basis for freedom of the individual's choice.
Britain's end-of-life strategy [18] reflects the core values of Britain's dominant culture—independence, individualism, autonomy, fear and futility of relentless efforts extending poor quality life. Not all patients and families, however, share these values and concerns. In many ethnic communities, physicians and families often feel that withholding medical information is in the best interests of the patient. This reflects the predominance of the ethical paradigm of beneficence in those cultures as opposed to the predominance of autonomy in Anglo-American culture. For cultures where beneficence dominates, concealing the truth is more humane and ethical, avoiding the loss of hope and unnecessary emotional distress inherently linked with disclosure.
The tenet of 'open and honest communication is always the best policy' is, therefore, a controversial one. The priority given to truth telling and thereby respecting autonomy (versus beneficence or non-malfeasance) is culturally and individually determined. Culture fundamentally shapes patients' views and belief systems. It shapes how we make meaning out of illness, suffering and dying and our preferences around decision making, receiving bad news and end-of-life care. Britain's emphasis on patient autonomy, informed consent and truth telling is, therefore, often at odds with the beliefs and values of a significant proportion of its population, who may place greater value on family involvement in decision making. Truth concealing can cause difficulties for treating physicians who have to make decisions balancing conflict with patients and their families, respecting differing cultural beliefs with denying patients their right to autonomy and the ethical paradigm of justice by pursuing futile treatment in a health care system limited by resources.
Abstract and Introduction
Abstract
Truth telling, a cardinal rule in Western medicine, is not a globally shared moral stance. Honest disclosure of terminal prognosis and diagnosis are regarded as imperative in preparing for the end of life. Yet in many cultures, truth concealment is common practice. In collectivist Asian and Muslim cultures, illness is a shared family affair. Consequently, decision making is family centred and beneficence and non-malfeasance play a dominant role in their ethical model, in contrast to patient autonomy in Western cultures. The 'four principles' are prevalent throughout Eastern and Western cultures, however, the weight with which they are considered and their understanding differ. The belief that a grave diagnosis or prognosis will extinguish hope in patients leads families to protect ill members from the truth. This denial of the truth, however, is linked with not losing faith in a cure. Thus, aggressive futile treatment can be expected. The challenge is to provide a health care service that is equable for all individuals in a given country. The British National Health Service provides care to all cultures but is bound by the legal principles and framework of the UK and aims for equity of provision by working within the UK ethical framework with legal and ethical norms being explained to all patients and relatives. This requires truth telling about prognosis and efficacy of potential treatments so that unrealistic expectations are not raised.
Introduction
Death is an inevitable and frequent event in the renal setting. Prevalence of end-stage renal disease (ESRD) in Europe in 2009 has risen to ~932 per million population, carrying with it a 5-year survival probability of 48%. Furthermore, the incidence of ESRD is increased 3- to 4-fold in a number of ethnic minority groups. This disproportionate burden of ESRD among ethnic minorities has in part been attributed to an increased incidence of hypertension and diabetes, susceptibility to the development of diabetic nephropathy and to that of tuberculosis.
London for example, typified by its multicultural society and population, has a resident non-UK born population of ~40%. Almost two-thirds (63%) of all migrant Londoners are from BAME (Black, Asian and Minority Ethnic) groups; they also comprise one-fifth (22%) of London's UK-born population. Around 50% of patients on renal replacement therapy in London are from ethnic minorities, predominantly South Asian. With such a diverse population, encounters between patients and physicians of different backgrounds are common and often challenging. Both patients and physicians bring to the clinical encounter their own languages, explanatory illness models, religious beliefs and ways of understanding the experience of suffering and dying. This is particularly pertinent in the renal setting where the high mortality associated with ESRD demands nephrologists to frequently engage in end-of-life discussions with their patients and their families.
As the speciality of palliative care has advanced, many have issued calls to recognise it as a fundamental human right. As contentious as these calls are, there is little disagreement on the benefits palliative care provides. For many patients, recognising the end of life facilitates meaningful advance care planning discussions, enabling strengthening of interpersonal relationships and control of their illness, so as to achieve the best quality of life for the patients and their families and, ultimately, to attain a good death. Renal palliative care has become increasingly recognised, as the significant morbidity and mortality associated with ESRD and renal replacement therapy are acknowledged and as concerns grow regarding the futility of treatment leading to prolonged dying and needless suffering. Joint annual educational palliative care and renal meetings, as well as the publishing of literature providing guidance to aid nephrologists in facilitating as good a quality death as possible, are important milestones.
Truth telling to competent patients is a cardinal rule widely affirmed in Anglo-American medical practice. For example, truth telling has been encouraged by the Gold Standards Framework in the UK primary care setting as a necessary component of the care of the dying, enabling a point of entry into palliative and end-of-life care. This moral (ethical) stance, however, is not echoed worldwide, nor has it always been so in the West historically. Paternalism and beneficence were the overarching principles underpinning medical ethics at the start of the twentieth century. Subsequently, respect for autonomy became the salient ethical principle influencing Western thought, and hence, deception became the epitome of unacceptable physician paternalism. In failing to provide the truth, physicians deny patients the right to exercise their autonomy. Explaining the truth about diagnosis, prognosis and treatment options generates the basis for freedom of the individual's choice.
Britain's end-of-life strategy [18] reflects the core values of Britain's dominant culture—independence, individualism, autonomy, fear and futility of relentless efforts extending poor quality life. Not all patients and families, however, share these values and concerns. In many ethnic communities, physicians and families often feel that withholding medical information is in the best interests of the patient. This reflects the predominance of the ethical paradigm of beneficence in those cultures as opposed to the predominance of autonomy in Anglo-American culture. For cultures where beneficence dominates, concealing the truth is more humane and ethical, avoiding the loss of hope and unnecessary emotional distress inherently linked with disclosure.
The tenet of 'open and honest communication is always the best policy' is, therefore, a controversial one. The priority given to truth telling and thereby respecting autonomy (versus beneficence or non-malfeasance) is culturally and individually determined. Culture fundamentally shapes patients' views and belief systems. It shapes how we make meaning out of illness, suffering and dying and our preferences around decision making, receiving bad news and end-of-life care. Britain's emphasis on patient autonomy, informed consent and truth telling is, therefore, often at odds with the beliefs and values of a significant proportion of its population, who may place greater value on family involvement in decision making. Truth concealing can cause difficulties for treating physicians who have to make decisions balancing conflict with patients and their families, respecting differing cultural beliefs with denying patients their right to autonomy and the ethical paradigm of justice by pursuing futile treatment in a health care system limited by resources.
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