Dr Kellehear stated that “dying is a social, psychological, and spiritual experience with a medical dimension and not the reverse” (2016). Critically explore this statement.
In his keynote speech at the Princess Alice Hospice Annual General Meeting Allan Kellehear clarified the importance of the social, psychological and spiritual elements entwined within the process of dying, and the need for these elements to be seriously considered before that of the medical dimension. As the natural inclination in the West is to die within the hospital setting, this essay will start by exploring the reasons why, and ways in which this option has become the norm. The essay will continue by comparing the modern advancements of science and law, with traditional practices originally centred around the family and religious belief. A discussion will then ensue to consider the importance of the aforementioned elements upon the approach to death, also compare the medical gaze with alternative practices that allow for such considerations, and explore the barriers in place that prevent alternative opportunities being experienced. An affirmative decision as to whether the ideology posited by Kellehear is founded, will conclude the essay.
White (2017) explains that, throughout the middle ages and the 18th century, bedside medicine was practiced with the doctor tending to the needs of the patient as a whole, this approach was fostered upon a doctor, patient relationship; where the overall feeling and opinion of the patient was considered and acted upon. The Industrial Revolution brought about the need for the doctor to be accessible to numerous patients suffering various afflictions. This necessity centralised the doctor and brought about hospitals where patients, now dependent on the doctor, received treatment for their specific ailment. A third wave of treatment practiced today is one that centres around laboratory medicine and technology through which both the doctor and the patient are reliant on science in order to determine the state of one’s health and future (2017). The hospital setting has therefore “shifted from an institution devoted to charity and to those who die to an institution which is fundamentally committed to healing, to curing, to restoring, and to the recovery process” (Kübler-Ross 1997 p9). Leder (1992), adds that “the business of the doctor is to attend to the living, not the dead, and to preserve life in all but extreme circumstances” (p17). As all of the technology is at the behest of the doctor, Leder’s comment suggests a hope that may explain why the hospital has become a favoured option for people dying in modern societies. However, death in modern societies is now reduced to manageable health issues, or avoidable hazards that can be treated in clinics, suppressed, and fought against; and this fight is now for many, the centre point of modern life (Giddens, 2017). When losing the fight then, a natural inclination would be to solicit a successfully prolonged life from the advancements of science founded within the hospital setting.
Science has indeed progressed significantly from the availability proffered by the hospital to both measure and analyze its successes, and dissect it’s failures. Walter, (1994) explains that by 1837 all deaths were required by law to be registered in England, thus giving rise to a “systematic compilation of mortality statistics”. He continues to explain that this development enabled the planning and prediction of the future, in line with social elements such as environment, income and nutrition (1994, p9). However, such predictions somewhat reduced the control that was formerly held by the church. Where God was the bringer of life and death, national statistics could now predict when death was most likely to occur. Informed people could now make healthier decisions, adopt vital life changes and live longer, death became less visible, hence the declining fear of death, hell and the everyday practice of religion. (Clark, 1993). Thus, through the work of French historian Philippe Aries and German sociologist Norbert Elias, Giddens explains that the disappearance of death from modern society marked a relegation of the dying to isolated spaces. Sequestered from society in dimly lit side wards, death is no longer public, and due to medical intervention; where a constant close community presence were central to the dying process, interaction with friends and loved ones is now “restricted to short visits at specific times of day. Therefore Elias laments that “dying can be a very lonely process” (2017, p368).
Upon the pronouncement of a terminal diagnosis, a biological and psychological divide seems to occur where the scrutinised body is no longer the primary concern for the individual as they mentally navigate their end of life experience (Armstrong, 1987). There are many varied sources that prove that although people differ, there are shared characteristics that occur in most cases, that of resistance to death, a life review, and the event of transcendent instances (Noyes Jr, R. 1972). Kubler-Ross (1989), agrees by identifying a first stage of coping is normally one of temporary denial, manifest as a form of shock that typically is gradually overcome. A second stage is that of anger. Followed by a stage of bargaining, next depression and finally a fifth stage of acceptance (1989). Armstrong add’s these experiences, were previously overseen in their entirety, by not only the close community, i.e. family and friends; but by a faith that enabled a positive hope for what may lay ahead after death, death-bed confessions, and ritualistic purification for the soul under the guidance and protection of the church (1987; p654). Many studies have proven to highlight the continued importance of the religious and spiritual element, as the belief held by the patient at this time often helps them to cope with the event of dying and the associated suffering, as well as positively impact upon the decisions made around the level of care provided towards the end of life (Puchalski, O’Donnell, 2005). Moreover, the spiritual understanding held by an individual “can be crucial in the reconstitution of self and identity at points of crisis, such as death”, regardless of the fact that these beliefs challenge the mainstream ideas of the corporeal world and its assumed limits (Hallam, Hockey, Howarth; 1999, p18).
It is the body that is the primary concern of the hospital. Thus Kübler-Ross (1997) explains that “the way in which the dying patient fits within the total system of the hospital we have to recognise that the hospital represents an institution which in a sometimes misunderstood, and sometimes misused way, has to routinize the emergencies of its clients and their varied individual needs” (1997; p9). Can one conclude then that the hospital is not sufficient enough to facilitate an holistic approach to death?
As the medical institution is not morally neutral, it is dominated by ‘experts’ who have their own financial and scientifically based incentives. The French theorist Foucault viewed modern medicine and the overall medical institution as a manifestation of social control that collects information that can be used to monitor activity and wield power over a docile and overly regulated population (White, 2017). Technology is also a driving force within the medical field that is further isolating the dying and dehumanising death. It is therefore impossible then, for ever advancing medical technology and a contrasting humane, dignified and holistic death to co-exist (Seymore, 1999). Walter draws attention to pre-technological and pre-medical times when death was a more personal and natural experience. The often intense and overly intrusive medicalisation of the dying process has led many to implement a revival of the practices of not only the Western ancestors but also to seek out the traditional practices of different cultures around the world in order to create a Natural Death Movement (Walter, 1994). This movement promotes death as a natural part of being human and gives the patient a voice that is heard to say that they want their pain to be controlled, but they do not wish to be excessively drugged, that they would like to be conscious, and in control, and most vitally, accompanied by their loved ones, even their pets if so desired throughout the process. The movement thus gives rise to the necessity of asserting the agency of the dying, the fulfilment of their choice, and their right to self determination, away from the sterility of the hospital setting. (Seymore, 1999).
One such facility in which a natural death can be experienced is that of the hospice developed in 1967 by Dr Cicely Saunders, in response to the insufficient availability of adequate pain relief provided to cancer sufferers (Seymour, 1999). More than forty years later the hospice, firmly established and of both Christian and secular perspective is available to all who wish to define their own experience of death in a peaceful environment. Saunders said in 1965 that the aim of the hospice was to let the patient “live fully until he dies as himself” (Walter, 1994). Interestingly, It is not only the care of the patient and their family that is considered. At a hospice care is also taken to ensure the wellbeing of their employees, with no hierarchy, and allotted time for regular reflection, “each member of the team is valued as an essential contributor to the process of helping patients and their families to achieve a good death” (Connor, 2018). Surely working and dying within an environment such as this would provide a positive experience for all concerned.
The option for making one’s transition in the familiarity of the home is also very much a viable option. In 2017 a Macmillan report brought to light the statistics explaining that 64% of people with cancer wished to die at home. However, whilst the desire is seen to be encouraged by the NHS, only 30% are ever actually granted their dying wish. The ‘complex’ reasons offered by the NHS as to why this is the case are remedied in part by the 6c’s: care, compassion, competence, communication, courage and commitment provided by community nurses. Unfortunately a lack of time and an inadequate infrastructure, i.e. resources, make this a challenging role as nurses struggle to provide the relevant space needed by the patient to address their feelings about the taboo that is dying (While, 2018). Effective medicating is also a matter of huge concern as increasing demands are placed upon informal carers, with little acknowledgement or support offered with regard to how they might be supported better. It is inevitable then that their failures to control pain relief in the home can lead to increased hospital admissions and out of hours visits (Wilson, Caswell, Turner & Pollock, 2018).
Awareness also has to be highlighted around the chances of euthanasia taking place within the home setting. A survey carried out in America around the attitudes and desires of terminally ill patients and their primary caregivers (English speaking family members, friends or other persons providing assistance) with regard to euthanasia showed that “a significant majority of terminally ill patients and recently bereaved caregivers supported euthanasia. Interestingly though, the study also shows that only a small minority actually requested assistance or hoarded drugs for suicide (Emanuel, Fairclough, & Emanuel, 2000).
In conclusion then, it is the removal of the social and spiritual elements of dying, and the lack of ample consideration for the psychological need of the patient, that Kellehear is calling to be instated as a primary concern under a shelter that facilitates a humane, dignified and holistic death; before the interventions of a medicalised death are imposed on the patient. The essay has shown that the established hospital setting is not sufficiently geared up to provide the psychological support needed by the patient namely the 6c’s: emotional care, compassion, competence, communication, courage and commitment. Where these basic requirements were covered by the community by way of family and friends, the church was also a major factor in the process of one’s transition from life to death. One’s faith in a higher being and a belief in an existence after death is what governed life and behaviour for the followers of Christianity. However with the Industrial Revolution came the requirement for every death to be recorded and as predictions could now be made on the mortality of man, an overall faith in God was replaced with scientific knowledge and fact. Technology has thus taken over the medical world and is advancing in its fight against death. What is lost in the hospital though is being provided by other networks, movements and organisations that identify with Kellehears vision for the ‘natural death’ without the dynamic of an overly oppressive system of medicalisation. Therefore a fitting response to Kellehears statement is that society has proven that a social and psychologically focussed death can be achieved as a norm with the continued growth of the Natural Death Movement.
References
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