Commentary on Kendall S (2006) Being asked not to tell: nurses’ experiences of caring for cancer patients not told their diagnosis. Journal of Clinical Nursing 15, 1149–1157
Version of Record online: 20 NOV 2007
Journal of Clinical Nursing
Volume 16, Issue 12, pages 2370–2371, December 2007
How to Cite
Holroyd, E. A. (2007), Commentary on Kendall S (2006) Being asked not to tell: nurses’ experiences of caring for cancer patients not told their diagnosis. Journal of Clinical Nursing 15, 1149–1157. Journal of Clinical Nursing, 16: 2370–2371. doi: 10.1111/j.1365-2702.2006.01676.x
- Issue online: 20 NOV 2007
- Version of Record online: 20 NOV 2007
This paper (Kendall 2006) presents an important and under researched area in which culture, religion, moral philosophy, Chinese medicine, modernity and western-based ethics collide. The paper also begs the question of the complexity of lay and professional communications in respect to the decision to tell or not to tell the truth regarding the diagnosis of cancer for Chinese patients. With respect to Chinese society, issues of death taboo, family harmony, cancer as contagious, deference to authority and non-verbal communication patterns sit at the heart of this debate.
Many Chinese families object to nurses and doctors telling an unfavourable diagnosis and prognosis directly to their family member. This paper focuses on the difficulties nurses encounter when caring for Chinese patients who have not been informed of their diagnosis. While the aim intends to investigate a highly needed and under researched area, I would argue that the paper needs to be situated in a more in-depth Chinese analysis. While a Chinese context is alluded to in the introduction, much more use needs to have been made of the Chinese anthropological and philosophical essays that take into account the core issues at stake here. Little recourse is made to ‘Chineseness’ in relevance to history to clinical service.
For Registered Nurses who are ethnically Chinese and work in the medical systems of Hong Kong, the conflict is between personal beliefs systems and immersion in bio-medical education in which a western ethical system is paramount. The clash between these worlds has not been summarized in this paper yet is evident in the testimonies produced.
Many cultures perceive disclosure of impending death and, in particular, cancer as a harmful act. Doctors in Mainland, China often inform the family members of such a prognosis instead of the patient (Li & Chou 1997, Pang 1999). In Hong Kong only 68% of patients had been fully informed according to recent research (Fielding et al. 1995) and in the case of cancer 70% of patients had none or incomplete disclosure.
The paper would have further benefited from more comparative literature on the rates and experience of disclosure of bad news in Chinese, other Asian and non-Asian societies. Disclosure rates of cancer diagnosis range across cultures from a low of 24% in Greece to a high of 89% in Finland, averaging around 50% (Fielding et al. 1995). A study of terminally ill patients’ experiences of nursing support in Australia indicated that, while patients wanted the nurse to tell them if their condition had deteriorated, they also did not like the nurses talking directly to them about death and dying.
What is suggested is that, while this paper was situated in Chinese society, the responses were not uniquely Chinese. What is also inferred is a worldwide response to modernity and professional accountability rather than merely issues of medical disclosure. The paper, however, needed to argue for how this response may be in opposition to Chinese belief systems designed to provide protection from fate in which ‘family determination’ and ‘death as taboo’ needs consideration (Tse et al. 2003). For example, recent sociological studies in Mainland China, conducted after the post Maosit era, show that, despite the death taboos, more older people are openly preparing for their funeral before their death by getting coffins, photos and ‘death’ clothing ready. What is suggested is a change in willingness to acknowledge death in both Chinese and other societies, this literature needs further examination.
China's multitude of pluralistic religions including Daoism, Buddhism and arguably Confucianism loosely informs the meaning and communication of death. In contemporary Hong Kong, clichéd phrases are popularly used that depict common elements of life death in a harmonious continuum, death as a preservation of virtue (Confucianism), belief in new life after death or nirvana (Buddhism), death as part of the process of the wheel of rebirth, and that death is both to be at peace and to be feared.
Asian cultural groups are usually described as familial and collectivist, with the self-existing as a response to others rather than the individual self-orientation of non-Chinese societies. Historically for the Chinese, the concept of self has been one of interdependence and harmony (Fan 1997). Thus, important personal decisions such as knowledge of impending death have been historically made in consultation with others. This is not to deny the importance of ‘truthfulness’ in Chinese society, which stems form key concept in the Doctrine of the Mean and the ‘Four Books’, as classics of Confucian beliefs systems. I would, however, argue that this paper needs further situating in a macro framework of change in contemporary Chinese society in which individual rights are a response to modernity and smaller families. Therefore, not only for nurses, but also for family members themselves this poses conflict as truth should be upheld and withholding information is against historical death taboos. While speaking about death is a taboo subject and capable of bringing bad fortune the expectation is that Chinese families need to be involved to share this burden.
This debate central to this paper is not just limited to the western ethical tenet of truth telling but the same dilemma can be found in Chinese medicine. Many of the elements of religious pluralism have been used to inform Chinese medicine. From the Han Dynasty to the Qing Dynasty textual comments on medical ethics can been found in respect of the importance of informing patients of the truth. For example, Introduction to Medicine by Ming Dynasty, Li Chan (1644AD); after the diagnosis, one must tell the truth to the patient and: You should identify the underlying pathology, and be bold enough to talk about life and death (Ho 1995).
Though for the Chinese, death is a taboo subject, the psychosocial and spiritual burden on facing death might not be particularly strong or necessarily any worse than in other cultures and might not override the requirement for truth disclosure. What is at stake is that, while patients, Chinese and others, may rationally want to know the truth they may not be emotionally ready for such information. Furthermore, there are clear differences in the power basis of lay (patient)- professional (nurse) interactions. The Chinese, in particular older people, perceive themselves in a hierarchical relationship with their doctor or nurse compared with a potentially more equal power basis of such relationships outside of China.
In summary ‘taboo’ about death and diagnosis of cancer is not necessarily limited too certain cultures, but the case of this study does have specific Chinese characteristics. This paper is right to suggest that nurse's experience of caring for cancer patients who do not know their diagnosis is a real dilemma for any nurse, in any generation and in any culture. Furthermore, fear of death may well have worsened, making death a more hidden spectacle, a more segregated, more personal and highly cognoscenti event. The professional onus to ‘handle the diagnosis or non-diagnosis of death’ puts a heavy burden on nurses and doctors; torn between professional education and personal belief systems, institutions and families. With the institutionalization of dying and death, both Chinese and non-Chinese people have come to view death from cancer as an unnatural, strange and unmanageable event to be feared, hidden and alluded too.
In respect of clinical nursing practice we need to know whether the psychosocial and spiritual needs of Chinese patients who do not know their diagnosis is really worse among the present day Chinese or similar to other groups of people. As Western ethics are embedded in nursing culture we also need to know whether the increasing demand for professional autonomy and truth telling represent a dilemma to Chinese nurses belief systems. This study does not always follow through on testimonies in which patients allude to the importance of nurses avoiding using words such ‘death’, ‘fatal illness’ or ‘cancer’, and should accept the patient avoiding these words. However, it is evident that nurses in this study were professionally powerless to use more tacit communication strategies.
The paper poses more questions than answers and ones that are unlikely to be answered in the future. The study while falling short of an in-depth analysis of the issues does raise awareness. It is important to continue to engage in further debates that combine disciplines and focus on belief systems to address the clash between professional and personal worlds, religion, Chinese medicine, western ethics and death taboos.
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