Academic journal article Health Sociology Review

The Mismanagement of Dying

Academic journal article Health Sociology Review

The Mismanagement of Dying

Article excerpt

Introduction

Dying today is dreadfully mismanaged. People live longer and certainly most of those in contemporary Western societies have come to expect an increased quality of life. Yet despite improved public health and claims of medical progress, the majority of people face a period of prolonged dying associated with complex and often multiple conditions requiring systematic, cohesive and empathetic social and medical care (McNamara 2001). Although we may be able to find examples of 'good death' scenarios, these are the stories of the lucky few who have, for one reason or another, access to the social and material resources that allow for the careful and informed management of the dying process. Care of the dying has not improved in any large scale way (Fordham and Dowrick 1999), and we now live in a time of the shameful' death with people devoid of the support they need to face the trials associated with dying, often facing social isolation and poverty (Kellehear 2007:248).

In seeking to clarify the level of mismanagement evident in end-of-life issues in contemporary Western societies, we may well ask what would a well-managed death look like and if it is indeed achievable. Management in matters related to health has in recent times focussed on management of the self, particularly in relation to personal responsibility for health (Hughes 2004) and 'new' regimes of public health (Petersen and Lupton 1996). There has also been attention given to managing one's own chronic condition, although this direction is more often driven by cost containment than by strategies that allow people to integrate their illness into their daily lives in meaningful ways (Walker 2003). These perspectives value an autonomous agent or active citizen who is free to take control of his or her own affairs and make informed choices, or in the very least delegate that control to another more capable person. The model of active decision-making and appropriate delegation informs current thinking about advanced directives for end-of-life care (Jordens et al 2005; Seymour et al 2004).

Taken to its extreme, self-managed dying might push the ethical and legal boundaries, allowing, for example, the practice of euthanasia or the use of heroin to alleviate pain in the terminal phase of life. Putting aside ethico-legal boundaries, most people approaching the endof-life face challenge enough in negotiating the complex medical system. As Kellehear (2007:149) aptly notes, the irony of a wellmanaged death is that one needs reasonable health in order to achieve it. As much as a healthy life followed by a sudden deterioration and death in very old age is an ideal valued by many, the reality is that a large majority of people die after a long period of chronic illness. In Australia, for example, the 'prolonged', 'slow' or 'lingering' death is now far more common with at least 55 per cent of people dying of conditions associated with complex symptoms and gradual deterioration (Rosenwax et al 2005). This conservative estimate was based on a study using mortality and morbidity data that gives a broad brushstroke and does not capture the full extent and social cost of the last months and sometimes years before death.

Dying is not a fixed point in time, and for all but the minority who die suddenly, the process will most likely bring them into contact with doctors and the hospital system. For some time it has been common practice for doctors to inform cancer patients about their prognosis (Good et al 1990; Thomsen et al 1993) though this does not seem to be the case for other conditions, partially due to the difficulty of predicting the clinical trajectories of complex diseases (Field 1996). Palliative care is seen to have improved the communication between doctors and patients (Field 1996) though Zimmermann (2007) suggests that palliative care tends to treat death denial as an obstacle, thus creating the perception that the correct way to die must include open communication. …

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