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Knowledge, acceptance and perception towards brainstem death among medical students in Hong Kong: a questionnaire survey on brainstem death

, , , &
Pages e125-e130 | Published online: 03 Jul 2009

Abstract

Background: Brainstem death (BSD), defined as the irreversible loss of consciousness, brainstem reflexes and the capacity to breathe, is not an uncommon scenario seen in the day to day practice of medical personnel. Upon the diagnosis of BSD, controversial issues of withdrawing life-supporting treatments and organ procuring for transplantation inevitably arise. This study evaluated the knowledge, acceptance and perception of BSD amongst medical students in Hong Kong.

Methods: A total of 126 medical students completed a self-administered questionnaire. Ten questions were used to assess their knowledge of BSD and this was correlated with their responses in three hypothetical vignettes.

Results: The mean score of the subjects’ knowledge was 6.03 out of 10. Less than half (48.8%) of the subjects’ knew that BSD is different from persistent vegetative state while 49.2% and 36.3% knew that BSD is accepted as death medically and legally in Hong Kong, respectively. When ‘diagnosed’ with BSD, 63.7%, 46.8% and 52.4% of the subjects would agree to the withdrawal of life-support from themselves, their most-loved one/family member and a stranger, respectively. Subjects with better knowledge and those who thought that doctors may tend to diagnose BSD to save resources or procure organs for transplantation were more ready to accept the withdrawal of life-support.

Conclusions: We concluded that knowledge of BSD amongst medical students was unsatisfactory and that urgent actions should be taken to remedy the situation. A better knowledge of BSD positively influenced the decision-making on withdrawing life-support and that adequate information regarding the outcome of BSD should be provided. On the other hand, the perception of doctors’ intentions behind diagnosing BSD has no direct influence on the decision-making. More emphasis is required on medical education, including a specific emphasis in the undergraduate lecture curriculum and bedside exposure to BSD diagnosis and subsequent counselling of patients’ family members.

Introduction

Brainstem death (BSD) is defined as the irreversible loss of consciousness, brainstem reflexes and the capacity to breathe (Pallis Citation1982). BSD arguably indicates brain death as a whole, and patients diagnosed with BSD never survived (Pallis Citation1983). As in other countries, the diagnosis of BSD in Hong Kong requires the fulfillment of a set of stringent criteria (The Hong Kong Society of Critical Care Medicine). Since its initial introduction in the United States in 1968, the concept of BSD has attracted a lot of criticism for being constructed to facilitate organ procurement and the withdrawal of life-support treatment (Youngner Citation1992; Pernick Citation1999). Nonetheless, BSD is now recognized as death both medically and legally in many countries, including Hong Kong. There are, however, conceptual variations amongst different countries and the diagnostic criteria may also vary from country to country (Wijdicks Citation2002). In the United States, for example, brain death was regarded as BSD plus whole-brain death while in other countries, like the United Kingdom, BSD is equated with brain death.

Following the documentation of BSD, two important implications may arise. First, life-support treatment may be withdrawn, and secondly, organ procurement for transplantation may be performed. It is therefore important for medical personnel involved in the care of critically ill patients to have adequate knowledge on BSD in order to perform appropriate and effective counselling.

The present study aims to assess the level of knowledge and the perception on BSD amongst medical students, and to study factors which may influence their decision-making on the withdrawal of life support therapy upon the diagnosis of BSD. The findings may provide guidance for future development in undergraduate curriculum with regards to this important end-of-life issue.

Materials and methods

Study design and sample

This is a cross-sectional study conducted at the Li Ka Shing Faculty of Medicine of the University of Hong Kong. The latter is one of the two medical faculties in Hong Kong which has over 120 students in each academic year. Questionnaires were completed by the undergraduate medical students over a study period of two months. The questionnaire consisted of 18 questions in English which was designed specifically for the purpose of the study. All subjects recruited were citizens of Hong Kong. Exclusion criteria included exchange students, postgraduate students, teaching and administrative staff. Participation in the survey was voluntary. Ethics approval for this study had been obtained from the Institutional Review Board of the University of Hong Kong/Hospital Authority Hong Kong West Cluster (HKU/HA HKW IRB).

The subjects’ knowledge on BSD was assessed by 10 true-or-false questions, giving a maximum score of 10. Our subjects were also asked whether they would agree to the withdrawal of life-support treatment from three hypothetical groups of patients: (i) themselves, (ii) their most-loved one/family members; and (iii) a stranger. Their perception towards whether doctors may tend to diagnose BSD to save resources and/or procure organs, and the influence of these perceptions on their subsequent decisions on the withdrawal of life support were also investigated.

Statistical analysis

Statistical analysis was performed using SPSS software (version 14.0). The difference in mean score of the knowledge within each demographic variable was tested with independent sample t-test. Categorical variables were compared using Pearson's chi-square tests. Where multiple demographic variables were found to correlate with a certain variable, binary logistic regression was used to assess correlation after adjusting for other variables. A p-value of less than 0.05 was taken as statistical significance.

Results

A total of 126 subjects out of a possible 380 was included, representing 33% of the target group. shows the demographic data of the subjects.

Table 1.  Demographic data of the subjects

Knowledge on BSD

Of the 124 subjects (two subjects with missing data), 121 (97.6%) had heard of BSD before. Fifteen subjects (12.1%) rated their knowledge as good, 76 (61.3%) as average and 33 (26.6%) as poor. Their knowledge on BSD was assessed with a set of 10 questions. The mean score of the subjects was 6.03 out of a possible 10, with a standard deviation of 1.963. shows the 10 questions and the subjects’ responses.

Table 2.  The 10 questions and the subjects’ responses

Correct answers were given by less than 50% of the subjects in three questions. Amongst the subjects, 35 (28%) and 24 (19.2%) of them were not aware of the fact that patients with BSD may shed tears, and may urinate or defecate, respectively. Only 61 (48.8%) subjects were aware of the fact that BSD is not equivalent to persistent vegetative state. Moreover, 62 (49.2%) and 45 (36.3%) of the subjects knew that BSD is accepted as medical and legal death in Hong Kong.

Withdrawal of life-support treatment

Seventy-nine (63.7%), 58 (46.8%) and 65 (52.4%) subjects would agree to withdraw life-support from themselves, their most-loved one/family members and a stranger, respectively, upon the hypothetical diagnosis of BSD. These are summarized in . Within the same subject, the thresholds of deciding whether to withdraw life support from themselves, their most-loved one/family member and a stranger were different. Of those who would agree to withdraw life-support from themselves, only 57 (72.2%) and 61 (77.2%) would agree to withdraw life-support treatment from their family member/most-loved one and a stranger, respectively. The results are summarized in and . Moreover, only 31 (25%) subjects would wish to witness the procedure of life-support withdrawal while 73 (58.9%) of them would refuse to do so.

Figure 1. Decisions for a family member/most-loved one amongst subjects who agreed to withdrawal of life-support from themselves.

Figure 1. Decisions for a family member/most-loved one amongst subjects who agreed to withdrawal of life-support from themselves.

Figure 2. Decisions for a stranger amongst subjects who agreed to withdrawal of life-support from themselves.

Figure 2. Decisions for a stranger amongst subjects who agreed to withdrawal of life-support from themselves.

Table 3.  Decisions on withdrawing life-support from the three hypothetical groups of patients

Potential correlation between the knowledge of BSD and the decision of withdrawing life-support was investigated. It was found that subjects with higher mean scores on the knowledge on BSD were more likely to agree to the withdrawal of life-support treatment in all three hypothetical groups of patients. Statistical significance was detected regarding the subjects’ decision to withdraw life-support from themselves. The results are presented in .

Table 4.  Knowledge and the decision to withdraw life-support treatment

Perception of BSD

Overall, 18 (14.5%) and 21 (16.9%) subjects thought that doctors may tend to diagnose BSD in order to save resources and procure viable organs for transplantation, respectively. Among subjects who think that doctors may tend to diagnose BSD to save resources, the majority would agree to withdraw life-support from themselves and a stranger respectively (but not from their family member/most-loved one). This was also observed in subjects who thought that doctors may tend to diagnose BSD to facilitate organ procurement. Statistical significance was detected in one group of subjects – those who thought that doctors might tend to diagnose BSD for organ procurement were more likely to agree to the withdraw life-support treatment from themselves. The results were summarized in .

Table 5.  Relationship between the subjects’ perception of BSD and the withdrawal of life-support treatment: (a); (b); (c)

Discussion

In the present study, the majority of the subjects had heard of BSD before, and rated their knowledge on the subject as average. This is consistent with the findings in another study in which 79% of the medical students claimed that they know “a little” about BSD (Ohwaki et al. Citation2006). Based on a set of non-standardized questions, we found that our subjects’ knowledge on BSD was unsatisfactory. Similar findings have been obtained in a Japanese study in which 65% of students claimed that they know “a little” about the diagnostic criteria of BSD (Ohwaki et al. Citation2006). In another study conducted in Canada, the mean knowledge score obtained by medical students was 6.7 out of a possible 14 (Bardell et al. Citation2003).

Patients with BSD may continue to lacrimate, urinate or defecate, as these processes are not dependent on brainstem reflexes. These may be misinterpreted by the patients’ relatives as signs of life or emotional reactions. In the present study, the majority of the students were not aware of the possibilities of these phenomena, and the potential need to counsel family members accordingly. Moreover, less than half of the students were aware of the fact that BSD is different from persistent vegetative state (PVS), which is defined as the persistent loss of higher cortical brain functions. This reflects the common confusion amongst the general public and medical personnel with regard to these two conditions in neurologically impaired patients. Province (Citation2005) stated that this confusion was contributed by the use of imprecise terminology and the failure to employ effective and uniform protocol of assessment. PVS was also frequently misdiagnosed (Andrews et al. Citation1996), reflecting the imprecise definition of the term and the possible confusion with BSD. In the study of Siminoff (Siminoff et al. Citation2004), a group of undergraduate students, 86.2% of the subjects thought that BSD patients were dead while 34.1% of them thought that patients in PVS were dead. Distinction of BSD from PVS patients is important for medical personnel dealing with critically ill patients, as the two require different management approaches.

BSD is accepted as death both medically and legally in Hong Kong. However, only 49.2% of our subjects would consider BSD as equivalent to medical death. This is similar to the results obtained from other studies in which 60% (Japan) (Bagheri et al. Citation2003) and 64% (Canada) (Bardell et al. Citation2003) of subjects would accept BSD as human death. In addition, only 36.3% of our subjects recognized the legal status of BSD in Hong Kong, compared with the rates of 33.7% (Ohio, the United States) (Siminoff et al. Citation2004) and 46% (Missouri, the United States) (Dubois & Schmidt Citation2003) from other studies. The diagnostic criteria of BSD may vary from country to country and the recognition of BSD as legal death is of particular importance with regards to the subsequent implications of life-support withdrawal and organ procurement (Haupt & Hofling Citation2002). The provision of accurate information is important in facilitating decisions on the withdrawal of life support and organ procurement. Dubois & Anderson (Citation2006) found that the general public and medical personnel were not familiar with the medical and legal status of BSD and that they were more concerned with organ donation after cardiac death than after BSD. In the study of Ndlovu et al. (Citation1998), it was reported that among the Black South Africans, more education was required to correct ignorance and misconception in order to increase the rate of organ donation in patients diagnosed with BSD. Rix (Citation1990) also reported that even after a public education campaign, there was still much misunderstanding about the criteria of BSD and that more specific education to target groups may increase trust in the definition of BSD and organ donation. Although the present study only involved a group of medical students in one medical school in Hong Kong, our findings may suggest the need for more emphasis on this issue within the current medical curriculum.

The awareness of the need not to prolong futile treatment in patients with BSD is important not only for the saving of medical resources but also for effective counseling of family members during their bereavement process. We found that the acceptance of BSD as human death, hence the willingness to withdraw life-support therapy, was significantly affected by the subjects’ knowledge on BSD. This was consistent with the finding of Ohwaki et al.'s (Citation2006) study that an increase in the knowledge of BSD has a positive attitude towards BSD and organ donation. The present study also suggested that our subjects had a higher threshold to withdraw life-support from their most-loved one/family members and a stranger than from themselves upon the diagnosis of BSD. This is a commonly observed phenomenon in other end-of-life situations such as the provision of basic needs to patients in the PVS. Asai et al. (Citation1990) found that fewer individuals would agree to withdraw artificial nutrition, hydration and antibiotics in the event of pneumonia developing in a stranger than in themselves (3% vs. 40% and 30% vs. 31%). The family decision-making about withdrawing life-support from a patient with BSD is complex and involves three interrelated processes (Swigart et al. Citation1996). Little is known about the actual experience family members may go through but multiple factors are implicated. Among these, Miller et al. (Citation1992) suggested that the ‘patient's wish’ is the most important factor. This may explain the observed phenomenon in our study because when deciding to withdraw life-support from an individual's most-loved one/family member or a stranger, the ‘patient's wish’ is not known. Oberholster et al. (Citation1998) also reported that, among the Africans, factors including defense mechanism of coping, individual and family experiences in the past, emotional support and the ability to ‘let go’ of the patient may also affect the decision-making. Cultural background may also have a role. It has been shown that Chinese societies place an important emphasis in community values such as harmony and respect for parents and ancestors (Cheng et al. Citation1998). As a result, decisions on the withdrawal of life-support upon the diagnosis of BSD may not only depend on patient autonomy but on a family-based decision (Ip et al. Citation1998).

In this study, we investigated whether the perception towards doctors’ possible ‘intention’ to diagnose BSD to save resources and extract viable organs may have an influence on the decision of life-support withdrawal. Contrary to the common belief that individuals may oppose the withdrawal of life-support treatment because of these concerns, we found that a higher percentage of subjects would actually agree to withdraw life-support treatment even though they thought that doctors may tend to diagnose BSD in order to save resources or procure viable organs for transplantation. The findings suggested that adequate information regarding the ‘prognosis’ of BSD rather than concerns for the above issues is a more significant factor affecting the decision-making process. Ndlovu et al. (Citation1998) also echoed this finding by suggesting that altruism is a positive factor for acquiring consent for organ donation. This again emphasized the importance of education amongst medical personnel as well as careful and detailed counselling with family members.

This present study has several limitations. The study population was small and confined to a selected group of medical students from one medical school in this locality. Only 10 non-standard questions were used to assess the level of general knowledge on BSD. Moreover, the response of subjects regarding the diagnosis of BSD was only based on hypothetical vignettes which may be different when they were faced with the real clinical situation. Furthermore, there was only superficial exploration of the subjects’ perception towards BSD and more in-depth investigations should be done in order to analyse the different factors affecting their perception. Nonetheless, our findings may serve to provide guidance for the education of medical students and other medical personnel regarding BSD and other end-of-life issues.

In response to the conclusions drawn from this study, which showed an unsatisfactory level of knowledge regarding BSD and common misconceptions between different technical terms among medical students in this university, the faculty has proposed a few measures to improve the situation. These include allocating more time in the undergraduate lecture curriculum to strengthen fundamental knowledge on BSD, the underlying physiology, its diagnosis and the controversies that arise, as well as the status of BSD in the medical and legal field. Efforts will also be made to increase the bedside exposure of students in clinical years to ‘patients’ who are brainstem dead and to observe the conuselling of family members by experienced medical personnel. The faculty hopes that these measures would be of help in rectifying the current situation in the near future.

Conclusion

The present study provides an understanding of the knowledge, acceptance and perception of BSD among medical students in Hong Kong. The level of general knowledge on BSD amongst medical students in Hong Kong is unsatisfactory. A number of factors, including the level of knowledge on BSD, and an individual's perception of the doctor's ‘incentive’ in diagnosing BSD may affect decision-making on the withdrawal of life-support. There is a need to provide adequate information and education for medical personnel in this important end-of-life issue in order to facilitate appropriate patient management and counseling for family members.

Acknowledgements

This study was carried out as part of the Health Research Project (2005–2006) of the Li Ka Shing Faculty of Medicine, The University of Hong Kong with the help of Dr SM McGhee, Chan Koon Ming, Cheng Wai Hui, Cheung Yan Kit, Ho Ka Ying and Shin Kendrick.

Additional information

Notes on contributors

Fung On Yee Connie

FUNG ON YEE CONNIE, LEUNG KWAN HUNG KELVIN, AU CHEUK CHUNG AND CHAN MAN KA DIANA are final year medical students of the Li Ka Shing Faculty of Medicine, University of Hong Kong.

Leung Kwan Hung Kelvin

FUNG ON YEE CONNIE, LEUNG KWAN HUNG KELVIN, AU CHEUK CHUNG AND CHAN MAN KA DIANA are final year medical students of the Li Ka Shing Faculty of Medicine, University of Hong Kong.

Au Cheuk Chung

FUNG ON YEE CONNIE, LEUNG KWAN HUNG KELVIN, AU CHEUK CHUNG AND CHAN MAN KA DIANA are final year medical students of the Li Ka Shing Faculty of Medicine, University of Hong Kong.

Chan Man Ka Diana

FUNG ON YEE CONNIE, LEUNG KWAN HUNG KELVIN, AU CHEUK CHUNG AND CHAN MAN KA DIANA are final year medical students of the Li Ka Shing Faculty of Medicine, University of Hong Kong.

Leung Ka Kit Gilberto

DR. LEUNG KA KIT GILBERTO, MBBS(London), BSc(London), FRCS(Edin), FCSHK, FHKAM(Surg), is Assistant Professor in the Department of Surgery, University of Hong Kong. He has special interest in neurosurgery and works in Queen Mary Hospital, Hong Kong.

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