To what extent has psychological theory informed our understanding of response to loss and or/adjustment to dying?
This essay aims to highlight some of the main approaches in psychological theory that have contributed to our understanding of grief, loss and adjustment associated with death, dying and bereavement. Some of the main models that have influenced the work on this subject have been outlined briefly and then examined with respect to existing literary evidence. The research by Kubler-Ross (1969), Buckman (1993), Copp (1996), Maciejewski (2007) and Bonanno (2009) are among some of the main approaches that have been described. Criticisms and limitations within each perspective have been underscored and a cross-examination between theories has also been made wherever possible. Difficulties in investigating death have also been pointed out. The discussion primarily focuses on death caused by prolonged illness or chronic disease. Each approach has been examined from the point of view of the dying individual, their loved ones and their health care providers. The essay concludes that every model has its merits and demerits that have helped to evolve the understanding of death and bereavement. Current trajectories on the topic have however moved towards including a multi-faceted view of death and its characteristics. In doing so it has also paved the way for better and more comprehensive care for the dying and their needs, as well as those of the their healthcare providers and families.
Keywords: Death, Dying, Grief, Response to Loss, Stages of Dying, Bereavement
Word Count (excluding references and appendices): 3, 048
Whether it is fear, uncertainty or unpreparedness, there is something that prevents people from discussing the subject of death openly. Despite the technological, spiritual and material advances in the world today, dying has been, and perhaps always will be, a distasteful topic to talk about (Kubler-Ross, 2009). But even with the often-frightened reaction that it receives, death is not something that can be avoided or pushed under the carpet. This is especially true for healthcare providers who are bound to come across death in some form or situation at their workplace. Death for them is in fact a reality as true as life itself.
For that reason, it is pertinent for practitioners working in healthcare settings to develop a deep understanding of death, not just its physical attributes but all the emotions, ideals and attitudes associated with the concept of dying (Lakhani, 2011). For the patients and their families, it is sometimes even more important to be able to face and understand their emotional reactions rather than gain a complete awareness of the physical changes that may be occurring inside them. Such a psychological insight into death can thus help the dying and their families comprehend their specific circumstances and deal with them in the most appropriate way. This in turn can build effective communication between health practitioners and their patients, thus allowing a better assessment of end-of-life needs.
This essay explores some of the approaches in psychological theory that have contributed to our understanding of responses to loss, death and grief. It will briefly outline these approaches first and then highlight their prevalence in empirical research. Strengths and limitations of each perspective have been pointed out and a cross examination between theories has been made wherever possible. It should be mentioned that the essay looks at death resulting from natural causes particularly a chronic, debilitating and/or terminal illness. Death that is caused by accidents, acute attacks or sudden unforeseen circumstances where the patient, family or carers have not had a chance to absorb and react to what is happening have not been included in the investigation. The essay aims to conclude that each approach has its own merits and has helped transform healthcare given to those at the end of their life. While different individuals and healthcare professionals may subscribe to different and even opposing perspectives, each one has helped in its own way to further our understanding of the subject. However the future of research in this subject aims to incorporate a wider multi-faceted view of the dying and bereavement process to enable affected individuals to cope better.
Deconstructing dying and grief
The advancement in modern healthcare has meant that more can now be done to keep a human being alive even if it is merely at a physiological level (Neuberger, 2004). This, combined with growing life expectancies in the developed world has pushed away the idea of death into the oblivion (Cohen & Kass, 2006). Ironically, an average individual will still be exposed to ‘thanatological themes in television, cinema and other forms of media’ (Durkin, 2003 p. 5) on an almost daily basis, But death as applied to one’s own self is becoming a remote concept. It is seen everywhere yet is irrelevant to a person until he or she is afflicted by it (Cohen & Kass, 2006; Neuberger, 2004).
For the elderly, even if they accept death as an eventual inevitability – fears, uncertainty and anxiety do arise once a heightened awareness of the impending death is made (Lloyd-Williams et al, 2007). As a person struggles to grapple with the looming end, a variety of different ways will be adopted to cope with the situation. A lot of reactions will depend upon personal attitudes, family upbringing and personality makeup (Callanan & Kelley, 1992; Buckman, 1993). A lot more can be dependent upon the kind of healthcare they receive. A psychological investigation into an understanding of death is therefore both relevant and essential for those confronted with death, their loved ones and their healthcare providers.
Much of the discourse on death and grief has originated within healthcare practice (Copp, 1998). The most influential work in this area has been conducted by Elisabeth Kubler-Ross (1969, 2009), considered the pioneer of Near-death studies. The Swiss psychiatrist worked extensively with terminally ill patients, their families and professional caregivers. Her work with over 500 dying patients resulted in the formation of the ‘Kubler-Ross model’ or the ‘five stages of grief’. Briefly these can be described as follows:
- Denial: usually the first defensive reaction of a person towards the news of death: ‘this is not be happening to me’ (Kubler-Ross, 2009 p. 31). It may provide a temporary relief to the affected individual giving them time to absorb the extent of the reality. Over time, it will usually be replaced by a heightened awareness of the illness and the approaching end (Kubler-Ross, 2009 p. 33). However, instances have been recorded where patients continue using denial as their sole coping mechanism right up till the end. These are patients who may deny treatments/ medication in a healthcare setting (Kubler-Ross, 2009 p. 35) and go great lengths to seem healthy even if they feel otherwise (Kubler-Ross, 2009 p. 37).
- Anger: once people accept the reality of their illness the second reaction may be ‘why me?’ (Kubler-Ross, 2009, p.40). During this phase the dying individual may undergo fits of rage, envy and annoyance at having been restricted because of their condition (Kubler-Ross, 2009, p.42). If not sensitively handled, the patient will be at their worst during this time.
- Bargaining: this stage is when the dying individual is now hoping for an extension of their time left (Kubler-Ross, 2009, p. 66). It is usually less vocalised than the preceding stages because it often involves a ‘secret deal’ on behalf of the patient, mostly with God (Kubler-Ross, 2009, p. 67-68). Kubler-Ross (2009) emphasises the need to recognise and acknowledge these feelings in a patient instead of brushing them aside. This is significant since these feelings are valuable insights into how the affected individual views their own death and may identify feelings of guilt, fear and regret that they might need to resolve in the time left (Kubler-Ross, 2009, p. 68).
- Depression: in this stage the dying person has more or less come to terms with the certainty of their death. What they struggle to deal with is the great sense of loss (Kubler-Ross, 2009, p. 69). Although it may be painful for loved ones and carers to watch a patient in this stage, it is essential that the dying individual experiences the anguish and grieves before parting his ways with the world and loved ones in peace (Kubler-Ross, 2009, p. 72).
- Acceptance: once the patient has completely realised his mortality, he or she reaches the acceptance phase. This is when the individual will usually be tired of struggling against what is to come and resigns himself to wait for the end. It is important to note that even though this is by no means a ‘happy’ phase but the patient does not also feel resentment of hopelessness. Rather, there is a sense of peace and agreement with fate. Kubler-Ross (2009) also refers to it as a phase ‘void of feelings’ (p. 92).
Are these stages enough?
Kubler-Ross’s (1969) work was welcomed in healthcare settings because it was one of the first efforts to describe death and associated grief in a coherent, systemic way while maintaining a humanistic patient-practitioner relationship (Copp, 1998). However many limitations and methodological concerns regarding her work were overlooked. Kubler-Ross (2009) herself recognised that these stages were not complete or chronological and that different people may react to death in their own unique ways (p. 112).
Critics also found that the nature of the 5-stage framework was somewhat ‘prescriptive’ in presenting a universal experience of grief (Copp, 1998; Corr & Coolican, 2010). This may sometimes lead practitioners and loved ones to ignore reactions other than those postulated in the model. Also, the model considers only the psychosocial dynamics of grief associated with loss and dying while physical, interactional or spiritual dimensions are left out of the analysis, thus not recognising the multi-faceted character of death. The same problem however has also been observed with modifications of the model by other researchers such as Buckman (1993) and Corr (1992).
Buckman (1993) offered a 3-stage model to describe grief and loss that was more dependent on an individual’s own character and personality. Meanwhile Corr (1992) suggested a more task-based approach to define the process of dying. None of these approaches however has been backed by substantive empirical studies to establish their niche in the discourse of death and associated loss (Copp, 1998, p. 383-387).
It is also important to note that the five-stage model put forth by Kubler-Ross (1969) was initially presented as an insight into the responses of the dying. But these stages later assumed the role of describing post-death bereavement as well only with slight changes in the labels given to each stage. This suggested perhaps an equality of the grief associated with dying and loss associated with bereavement, which may is limiting as well as misleading (Corr & Coolican, 2010).
Furthermore, the model does not acknowledge the influence of a healthcare provider’s behaviour on responses to grief and loss. For the healthcare practitioner who has been trained to assist in preserving life and good health, taking care of the dying and their needs may at times present an ethical paradox of a kind (Kubler-Ross, 2009; Feifel, 1990). Countless healthcare providers consider a patient’s death as their own failure (Quill et al, 2001; Lugton, 2002). The patient’s bewildered, angry or anxious reaction may be wrongly construed as a healthcare professional’s own inadequacy (Quill et al, 2001). Empirical studies verify that occasionally healthcare professions may withdraw their support and emotional involvement in such situations to escape their own fears of death (Cohen & Kass, 2006; Quill et al, 2001; Kubler-Ross, 2009). This tendency to ‘detach’ is in-line with the age-old ideology of professionalism within the realm of healthcare (Kamerman, 1988). This emphasises the necessity of creating an environment within healthcare where all professionals understand their own attitudes towards death first and then acknowledge a dying patient’s fears, hopelessness, anxiety, anger or despair with empathy yet realism (Quill et al, 2001).
Is there more to grieving?
Many of the issues highlighted above have been reinforced during an extensive longitudinal cohort study of over 200 bereaved individuals by Maciejewski et al (2007). The authors investigated the presence of the five indicators of grief as postulated by the stage-theory and examined their chronological appearance post-loss over a period of two years. Their aim was to depict the psychological response of an ‘average’ person undergoing bereavement in Connecticut, United States (p. 721). The studied sample was recruited through obituaries, newspaper flyers and personal referrals (p. 717). Participants that had experienced the traumatic death of a loved one or were identified as having complicated levels of grief were excluded from the sample.
Results of this study found that the final stage of ‘acceptance’ was predominantly imminent within the sample even as little as one month after experiencing the loss of a loved one’s death. There was also a higher reporting of yearning (bargaining phase in the initial model) as compared to denial or anger (p. 721-722). Maciejewski et al (2007) also discovered that all grief indicators peaked during the course of six months post-loss. They postulated that any presence of these indicators later than 6 months may thus indicate an ‘abnormal’ response to grief and bereavement (p. 721).
Although the authors considered their result to be an affirmation of Kubler-Ross’s (1969) stage theory model, a closer look at the study’s methodology reveals several limitations within the original model, as previously mentioned. First, the sample that Maciejewski et al (2007) chose has been criticised for being highly ‘selective’ (Silver et al, 2007). Silver et al (2007) argue that by excluding individuals with complicated grief, the researchers eliminated a large section of the bereaved population that may actually require more attention than the ‘normal’ grievers (p. 2692). Second, the dominance of the ‘acceptance’ and ‘yearning’ phase shows that grief does not follow a sequential trajectory (Bonanno, 2007). Bonanno (2007) pointed out that the evident pattern of stages that was revealed by the Maciejewski et al. study actually supports the premise that people are often more resilient in their response to loss than perceived by the stage-theory model (Bonanno, 2007; Bonanno, 2002).
Bonanno (2007) also pointed out the presence of other methodological issues in Maciejewski et al’s (2007) analysis. For one, even though it was a longitudinal study, the data was extracted across different points in time from the trajectories of loss implied by the participants (Bonanno, 2007; Silver et al, 2007). There are also issues with the reliability of the data collected as only one questionnaire was used in the study to access each stage (Bonanno, 2007, p. 2693). Bonanno (2007) concludes that the stage-theory model should be used in healthcare practice as merely a preliminary source of information but that too with caution. He emphasises that the model does not take into account the multiple variables associated with an experience of death and bereavement in recent times.
Grief, loss and bereavement in recent times
Over the past few decades, the analysis of coping with grief associated with dying and loss has moved onto including a broader spectrum of variables. The aim is to include a larger bulk of experiences associated with the topic.
For the dying individual, research is now, for instance, uncovering how and when people want to die (Lloyd-Williams et al, 2007). A major section of the society (as much as 70% in the UK) is for instance moving towards an affinity to dying at home (Lakhani, 2011, p. 3018). Research has also explored concerns of the elderly surrounding end of life treatment. In interviews with 40 elderly individuals, Lloyd–Williams et al. (2007) found that anxiety around death centres more around dying a dignified and peaceful death without being a burden on others than reaching the end of life itself. A similar study on a sample of advanced lung-cancer patients revealed that dying individuals rated absence of physical pain to be the predominant characteristic of a ‘good death’ (Hughes et al, 2008). Another study, also on cancer patients suggested that patients are concerned about anxiety associated with the anticipation of death (Mystikadou et al, 2007). Such aspects associated with the subject of death were left out of the stage-theory analysis. The evidence also highlights that individuals are more resilient to loss and their concerns surround the subject of better coping rather than unfounded fears about death itself (Bonanno et al, 2002).
Another relatively unexplored coping mechanism highlighted in current literature is spirituality. Hughes et al (2008), examines the role of spirituality in helping patients with terminal conditions deal better with their circumstances. A deeper link with spiritual beliefs was also found helpful in dealing with post-death loss for bereaved family members, according to a prospective cohort study by Walsh et al (2002).
The above evidence also points towards a minor shift in the methodological analysis of response to death as delineated by Bonanno et al (2002). From cross sectional and short-term studies, researchers in healthcare are now highlighting the importance of longitudinal and prospective studies that can examine both pre- and post-loss bereavement (Bonanno, 2002).
As one of the contemporary researchers into the subject of grief, loss and bereavement Bonanno (2009) encourages healthcare professionals to look outside prescriptive and limiting models of explaining death. Future research, he argues, should take into account the occurrences of grief outside hospitals and in the lives of those confronted with death and the loss of a loved one. He also emphasizes that an integrative approach is necessary to incorporate previously ignored facets of coping with death. Some of these factors include the context of loss, the age at which it occurs, gender and cultural differences and the changing representation of relationships over time all need to be considered (Bonanno & Kaltman, 1999).
With regards to gender differences for example, a few longitudinal studies of bereaved individuals denote that men are significantly more likely to suffer from complicated and severe reactions to grief after a partner’s death (Nolen-Hoeksema et al, 1997; Stroebe et al, 2001). This also necessitates the inclusion of complicated grief and mourning within future studies (Rando, 1993). An analysis of the effectiveness of grief-counseling should also be examined to better understand the coping mechanisms of bereaved individuals.
Finally, current research has revealed a fresh approach towards grieving and dealing with loss in terms of attachment bonds with the dying and deceased. Where earlier theories of bereavement and loss concentrated on ‘letting go’ of the memories of the dead and moving on – thus severing attachment – the work of researchers such as Bonanno (2009) concentrates on maintaining and even cherishing these bonds. Such an approach may evidently help healthcare providers in refining patient-centered care. They can focus on ‘helping the dying and bereaved to heal’ rather than trying to be mere healers (Rothaupt & Becker, 2007 p. 13). For the dying or bereaving individual, this returns the locus of personal growth and reconciliation with loss and grief to their own self.
Despite the difficulties surrounding a discussion of death, the study of dying and bereavement has come a long way. Over the past few decades, research on coping mechanisms in individuals confronted with death, reactions of their loved ones and those of healthcare providers has resulted in a vast variety of hypothesis. From the stage-theory put forward by Kubler-Ross (1969) to the constructivist theories of Bonanno (2009) these theoretical frameworks have displayed a gradual evolution of the way we think of and process coping mechanisms associated with grief and bereavement. Each perspective has contributed its own part in completing our understanding of grief, death and bereavement. However in order to include a comprehensive analysis in the future, it is pertinent that a multi-faceted approach to the subject is used. More empirical research done over a longer period of time can also help further our understanding and provide new insights. These insights will benefit not only dying and bereaving people but also bolster their relationship with healthcare professionals.
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