ORIGINAL ARTICLE
The presence of family during brain stem death testing

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Abstract

Prior to 1959, cardiac and respiratory cessation was universally and unambiguously accepted as confirming the death of a person [M. Morioka, J. Clin. Nurs. 10 (2001) 132; Reconsidering brain death: a lesson from Japan’s fifteen years of experience, 2001, http://proquest.umi.com/pqdweb]. However, with the rapid pace of modern technology and resuscitation techniques, the boundaries between life and death have become blurred [J. Bothamley, Organ donation: brain stem death, 2000, http://proquest.umi.com/pqdweb; Re-examining death: against a higher brain criterion, 1999, http://proquest.umi.com/pqdweb]. As a result, a redefinition of death, ‘brain death’ has emerged [M. Brazier, Medicine, Patients and the Law, New ed., Penquin Books, London, 1992].

Most families faced with the brain stem death of a relative find the concept difficult to understand and have trouble in accepting that their relative is actually dead. In Part One of this two part series, the needs of families who are facing the brain stem death of a family member will be examined and explanations offered as to why families find the concept difficult to grasp. In addition, it will also advocate that family members are given the choice to be or not to be present during brain stem death testing. It is suggested that the presence of family members during brain stem death testing not only helps families to accept this concept of death but also promotes the grieving process. In Part Two, the barriers that inhibit family involvement and presence will be explored and methods for involving family proposed.

Introduction

Prior to 1959, cardiac and respiratory cessation was universally and unambiguously accepted as confirming the death of a person (Morioka 2001, Pearson et al. 2001). These signs were easily detectable, could be verified by ordinary people and equated with the public concept of death. However, with the rapid pace of modern technology and resuscitation techniques, the boundaries between life and death have become blurred with the possibility of biological life being maintained in the absence of consciousness (Bothamley 2000, Fisher 1999). As a result, a re-definition of death, ‘brain death’ has emerged (Brazier 1992).

Brain stem death is defined as the “… irreversible loss of the capacity for consciousness combined with irreversible loss of the capacity to breathe…” which leads to whole brain death (DoH 1998, p. 4). The difficulty with this definition of death is that it is more invisible, with individuals appearing as though they are alive. They are pink and well perfused, have a heartbeat, blood pressure and appear to be breathing because of mechanical ventilation. These outward signs of life make it difficult to understand or accept that death has occurred. It is suggested that if family members were allowed to witness brain stem death testing it may help them to accept that their relative has died (Pugh et al. 2000).

Section snippets

Family needs of critically-ill patients

The admission of a critically-ill family member to intensive care is an overwhelming and stressful event for relatives (Pelletier 1993). In brain stem death patients, the distress of relatives is heightened by the sudden, often traumatic and unexpected loss of their loved one (Coolican 1994, Pelletier 1993). It is suggested that while the patient is in a physical crisis the relatives are in a psychological crisis which will impact not only on the outcome for the patient but on the relative’s

Brain stem death versus conventional understanding of death

Brain stem death results from intracranial bleeds, conditions causing anoxia or cerebral oedema and traumatic brain injury (Schnell 1999). An existing code of practice for the recognition and confirmation of brain stem death was updated and endorsed by the DHSS as sufficient for determining brain death (DoH 1998). This code of practice for determining brain stem death evolved for the reasons listed in Table 2 and was aimed at alleviating public mistrust in the medical establishment in the

Cardiac cessation and death

Supporters of brain stem death argue that there is little difference in the realities between death as a result of cardiopulmonary death and brain stem death. While cardiopulmonary death does not signify death of every cell in the body, it implies death of the whole being (Pallis 1990). On the other hand, brain stem death signifies death of the person, despite the functioning of other organs (Curry and Bion 1994, Pallis 1990). This reversal in events has been likened to the decapitation of a

Personhood

One of the most fundamental arguments concerns personhood. Traditionally, it was believed that all human beings were persons. However, this assumption was challenged by bioethical dilemmas and has led to the separation of the term ‘human being’ from persons (Tsai 2001). In modern, western bioethical principles, persons are considered to be rational, self-conscious, autonomous moral agents with the term ‘human being’ referring only to a corporeal existence (Tsai 2001). The concept of brain stem

Organ donation and brain stem death

Another suggestion is that this concept of death was introduced because of the need for organs for transplantation (Shewmon 1998). There is no doubt that the demand for organs is on the increase but in practice it cannot be denied that the medical knowledge and technology that has made organ transplantation possible has also led to the ability to sustain artificial life. It is therefore imperative that criteria and protocols for diagnosing brain stem death be available if we are to be ethically

Why facilitate families in witnessing brain stem death testing

It is proposed that the presence of family during brain stem death testing, if desired, will help to clarify the concept and confirm death in the minds of relatives and avoid the ‘what if’s’ during the grieving process. It would also assure the family that the clinical decision to stop ventilation is based on the fact that their relative is dead and therefore further ventilation would be futile. Furthermore, it would reduce the risk of family members feeling, in some way, responsible for

Conclusion

To doctors, nurses and family members, the concept of brain stem death can be difficult to grasp and accept in the presence of so much apparent life (Pearson et al. 2001). While family presence in brain stem death testing is advocated in studies, it does not appear that family members have been asked if they want to be present (Coolican 1994, Pugh et al. 2000). The lack of identification of this need in the literature may be because studies have not been specifically related to this concept or

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