Author: Senior Palliative Care Nurse, Andrew Adeck Omuse
Case Study
A 58-year-old widow, lost her only surviving son; out of five she had. The son had been battling with advanced colorectal carcinoma that was not amenable to surgery or chemotherapy.
Although the patient had come to terms with the prospect of him dying within a few weeks to months, the mother had been so distraught and refused to even be talked to about the subject.
The palliative care specialist at this point called upon the two priests who were part of the team to have sessions. It was until this point that she opened up and discussed the anguish and fears she had of losing her only son. She had seemed ill as if from actual pathological causes and was mostly withdrawn and drifted away from conversations at times. She raised other issues about how people pass on in her village and church have been talking about her being a witch and that she had been responsible for the deaths of her children through the years. She acknowledged the fact that she was aware her son would be dead in a few days, but that she could not say it as it was culturally wrong to discuss someone being dead when they were still alive. She was devastated by the fact that she did not have good social support, and she felt that there was no need for her to continue with life after the death of her son, she felt was the last reason she had for being alive.
I met her a month after her son’s funeral, when she presented with acute heart failure following a myocardial infarction.
Personal Reflection
This cased has personal feelings of inadequacy and being ill prepared to handle cases of bereavement. Although some skills have been gained, there still remain many challenges that as a clinician I cannot handle without the involvement of other team members like a social worker, pastor, nurse and the community. This is a view help by most of the health care team members during one of our meetings.
The concept of bereavement and grief and the evaluation of classical and current models and theories that attempt to explain these experiences help us understand and provide better care for patients/families who are facing life limiting illnesses and death. Bereavement is the state of loss resulting from death (Genevro, et al., 2004) with highly complex, varied and individualized psychological, social and economic responses
This concept of bereavement is very valid in our settings, and I agree with Genevro’s explanations. From personal observations, and experiences, I have come to note how the loss of individual relative or friends has varied both in duration and effect on day-to-day activities. The psychosocial and economic responses to bereavement are multifactorial and the contributions of the deceased to life matter in determining the response. Freud and Bowlby (1980)’s theories on attachment and responses to loss are classic but remain very key in interpreting day to day losses faced by individuals and families today. Although these models were developed by studying children’s responses to loss and grief, their applicability in adults are very valid. (Fraley. R. C, 2010). Freud defined grief as an experience that usually follows a normal course but could lead to serious psychological consequences if the person fails to detach emotionally from the deceased. He proposed that severing of emotional bonds with the deceased is necessary for the bereaved person’s healthy recovery. (Wright & Hogan, 2008).Grief was divided into four phases namely: numbness-disbelief, separation distress, depression-mourning, and recovery; and were thought to be sequential from one to the next. In my view, I disagree that the steps of grieving can be sequential. However, grieve will often times oscillate between the various stages, with partial recovery and relapse, and highly complex personal and waning of emotional process. In the case, it held true that society today still views bereavement and the subject of death with great fear; and tend to avoid the topic at most. She never wanted to discuss the death of her son, and faced so much isolation and stigma from her community. The brushing aside of death topics is not only limited to the affected patient and family, but prevalent among health care workers who come into contact with bereaved families on a regular basis as was the case with our championing team. This in most instances contributes to poor outcomes of the grief process by individuals and families.
“Society today continues to deny and fear the reality of death. It is suggested that death is swept under the carpet so that people can distance themselves from a frightening and uncomfortable subject, but it remains a universal fact that 100% of all people will die.” Parkes, et al., (1997) cited by Carmichael. M., (2005). The above statement cannot be summed any better when exploring the concept and theories/models of bereavement and grief.
The bereavement models were refined by the works of Parkes and later researchers, and these form the core of second-generation theories. Parkes conceptualized that the stages of grieving are varied and fluctuate to and fro (oscillate), or wax and wane with time.
This was evident in the case where the psychological signs of yearning and denial kept on fluctuating from week to week, and would appear to have accepted the loss, but only to relapse a few weeks later. (Wright & Hogan, 2008). It is difficult to assign a time frame for oscillation of grief stages, but most researchers estimate up to 12 to 24 months. In general, declines in shock, yearning and sad mood are positive indicators of progress. Recovery is signaled by the bereaved person’s re-engagement in work and leisure activities, maintaining and developing meaningful interpersonal relationships, and consideration for the future as being potentially meaningful and satisfying (Lichtenthal et al,2010).
These theories were strengthened by other workers who brought in the key roles played by counselors and therapist in caring and comforting the bereaved. Emphasis was placed on the need of the mourner’s first task being acceptance of the reality of loss, followed by working through the pain, adjusting to the new environment, and spiritual adjustment. To attain these tasks, one needs availability of good bereavement support services.
Continuing bonds theory postulates the persistence attachment to the dead. This seems to hold true in most cases especially where the bereaved was the dependent in the relationship as was with her. The Dual Process Model explains how the bereaved individuals cope with suffering through limited periods of avoidance and keep oscillating or varying their grief responses. (Wright & Hogan, 2008; and Stroebe & Schut, 2005).
The transformation theories of grief have recognized the inter-personal response differences to grief. Thus, each person will grieve differently for the same kind of loss, or even the loss of a similar person or object. Our case study has demonstrated for example how she reacted differently to the loss of her last son in comparison to the other four children she lost earlier. The modern theories encourage the continued relationships with the deceased in new ways that can spur new growth. Most of health workers team members agreed with this view, which was shared by DDM in context. Research in the bereavement field has identified features of relationship, including closeness and type of relationship to the diseased person, as critical with respect to the intensity of the bereavement reaction (Bowlby, 1980)
Factors which influence bereavement outcome and the impact of grief on the health of the individual are varied. Anticipatory grief, which refers to a grief reaction that occurs in anticipation of an impending loss (may begin well before the time of bereavement) was evident in her a few weeks before the son died.
In most cases anticipatory grief may help an individual cope with the loss, but this may not be true in all as shown in the case of DDM. In some instances, anticipatory grief may be so intense to render one totally none-productive, and some may resort to acts like use of illicit drugs, excesses of alcohol and other odd behaviours. Earlier recognition of such responses to grief can alleviate grave consequences, and leave bereaving persons to be as productive as before in society. More intense anticipatory grieving (or grief-related emotional distress, cognitions, and behaviours that precede the event of bereavement) occurs with disease progression or when other forms of bad news are received. (Schuler. et al., 2012)
Lichtenthal et al., (2010)cited in Schuler. et al., (2012) points out that intense anticipatory grief may predict increased psychosocial distress and that adaptive communication patterns and familial cohesion may assist families in coping with anticipatory grief. The role of the family unit is emphasized in most guidelines for palliative care in addressing the challenges of bereavement and grief. Absence of proper family and social support structures could have played a huge role in the grief outcome in our client. This was probably even confounded by the lack of expertise and experience in our team to address the subject and recognise complications early.
The other key factors that influence grief is the importance/position held by the deceased and the bond they had with the individuals and family. A deceased person who was a bread winner will probably evoke much more emotional stress in the grieving family members.
Attitudes, beliefs, and practices regarding death, grief and mourning are characterized and described according to the multicultural context, myth, mysteries, and norms that describe cross-cultural relationships. Furthermore, cultural heritage may have a huge influence on individual’s experience of grief and mourning. (Kristeller. J. et al, 2014).
The above factors may thus determine whether a person will experience normal or common grief reactions that are marked by a gradual movement toward an acceptance of the loss; or have complicated grief response.
Cultural expressions of grief and mourning rituals are greatly varied. In the African context, death is mostly associated with evil spirits and witchcraft, a factor that often leads to stigmatization of the bereaved and grieving family. Strong cultural believes and fears of death are so deeply imbedded in society (Encyclopaedia of Death and Dying, 2014); this often leads to isolation and neglect of the bereaved. As health care workers, we often encounter unfamiliar cultural situations and yet are expected to have a lead role in the provision of bereavement services, leaving us at a loss to know how best to react.
Wailing at funerals is for example accepted as normal for women, but not for men in almost some South Sudanese cultures. A mother who has lost her infant child may not be guarded to visiting the burial site, or a husband/wife is guarded at the spouse’s burial. The expression of emotional reaction varies in different cultures. Excesses of grief expression are common in most African cultures, and a woman may scream, throw herself down, and smack her face. (Shirley Firth, 2001). This was noted as a common phenomenon among South Sudanese women, a scenario that does not differ much with the experiences I have seen among South Sudanese women that have lost a child. In contrast, a man who has lost a wife or child is often expected to mourn and but not to show excess emotional grief.
Religion, and rites performed at the time of death play a key role in some faiths. For example, most devout Catholics would request for a priest to be present at the time their loved one is taking his/her last breath. This is often seen as being appropriate, just like dying in a hospital for most Africans and Chinese is perceived by the affected families. (Shirley Firth, 2001). Absence of such support services often may lead to pathological grief and a sense of guilt by the bereaved who may feel they have not completed their obligation to God and the deceased.
The relationship between loss and pain throughout human development and the possible impact on the individual was explored mostly in detail by Mary Ainsworth and John Bowlby’s work. (Fraley. R. C, 2010). Marris, (1958) cited by Bowlby, (1980) claimed that grief and mourning processes in children and adults appear whenever attachment behaviours are activated; but the attachment figure continues to be unavailable. He also suggested that an inability to form deep relationships with others may result when the succession of substitutes is too frequent. This may often translate into physical symptoms like disturbed sleep patterns, headaches, poor appetite, weight loss, and poor control of pre-existing diseases like hypertension and diabetes.
In the case of, most of these physical manifestations were present and culminated into her suffering an acute myocardial infarction with heart failure, a few weeks after the death of her son. These responses will often have profound effects on the individual and family’s ability to continue with normal life sustaining activities and economy. And thus the person may require actual medical or psychiatric interventions.
The needs of the bereaved and the resources available for support are influenced by cultural, social, spiritual and economic factors to a large extent. In our local settings where the extended family and religious beliefs have a huge impact on individuals; the importance of family to the mediation of bereavement outcomes means family approaches are an important future direction for bereavement care. Thus training in the conduct of family meetings is essential component of staff development. Family meetings provide an important opportunity to learn about family functioning and coping and where possible should commence prior to the death of the patient. (Aranda, S & Milne, D., 2000). DDM’s case would have been totally different had the health care team taken the approach of using family meetings to offer bereavement support. This would have necessitated identification of major cultural or social issues that had led to the poor outcomes in the client.
Adequate bereavement services ought to be incorporated in the day to day activities of palliative care teams. Thus, strengthening the social welfare support, spiritual and financial services will be important in these settings, but are difficult in low income economies like ours.
Linkages to the various support services and early recognition of complicated grief and appropriate referral for treatment is cardinal. Involvement of the spiritual leaders plays an important role.
Disciplinary and Professional Skills in Bereavement:
The ability to support family and friends immediately before and throughout bereavement as a basis for providing comprehensive palliative care has been achieved through the experiences and literature review. Use of existing guidelines like the Australian Bereavement Guidelines is a useful tool in managing anticipatory, complicated and normal grief. (Aranda, S & Milne, D. 2000). The case of DDM would have been handle much differently and better, hopefully with good outcomes, had palliative care team had the skills that I now possess in bereavement support. To a larger extent the knowledge and skills that were applied in DDM’s case were far from being better.
To be effective at relieving suffering and improving quality of life, caregivers must be able to identify and respond to all the complex/multiple issues that patients and families may face. The ability to support colleagues in clinical areas and in the module group is key if this is to be a reality in palliative care services. Knowledge sharing through provision of group discussions, symposiums, and continued medical education and advocacy for palliative care to be wholly incorporated into the curriculum of medical schools is needed.
The ability to assess the possible impact of bereavement on an individual’s health is a very important facet of palliative care services. Complicated grief has been noted to be a big challenge, and the outcomes of grief may be unpredictable in most individuals. Through the skills I have gained, recognition of complicated grief and intense anticipatory grief can help ameliorate the worst prognostic outcomes of bereavement (Schuler. et al., 2012). From this experience, I plan to get involved from July, 2015 in clinical audits and palliative care research that may help with bereavement care in our local settings.
The ability to review an existing bereavement service has been gained as a number of national guidelines for countries like Australia and Canada were extensively studied. These have formed a firm framework of reference and establishing norms in bereavement support services for our hospital and country. (Aranda, S & Milne, D. 2000, and Ferris F.D. et al., 2002) We do not have a bereavement service in this setting or funeral homes. With the knowledge sharing hopefully, partnering with spiritual and social workers will be established.
The ability to incorporate the focus of the module within professional practice yet been achieved and I now feel that my ability to offer more comprehensive bereavement services will be enhanced as palliative care intensifies in South Sudan. However, several limitations exist mostly due to social-economic consequences of most emerging economies.
Conclusion
Bereavement is the state of loss resulting from death (Genevro, et al., 2004) with highly complex, varied and individualised psychological, social and economic responses. The psychological and economic responses to bereavement are multifactorial, and the contributions of the deceased to life, or their importance, matter in determining these responses. Freud and Bowlby (1980)’s theories on attachment and responses to loss form most of the classic theories, but remain very key in interpreting day to day losses faced by individuals and families today.
The bereavement models were refined by the works of Parkes and later researchers, and these form the core of second generation theories. Parkes conceptualized that the stages of grieving are varied and fluctuate (oscillate), or wax and wane with time, but with no obvious time frame.
Continuing bonds theory postulates the persistence attachment to the dead. The Dual Process Model explains how the bereaved individuals cope with suffering through limited periods of avoidance and keep oscillating or varying their grief responses. (Wright & Hogan, 2008; and Stroebe&Schut, 2005)
With the exploration of the subject of bereavement, one realizes the need for the establishment of bereavement support services in our humanitarian local settings. The feeling of dejection and neglect that most bereaved families experience can be overcome when there are support structures which will include: social, cultural, political, spiritual, psychological and economic facets. When these are well established, most bereaved would have enhanced recovery from grief, and prevent complications of grief through early recognition and family support.
Call to Action
- Advocacy for establishment palliative care services and bereavement support services integration conjunction with the social welfare support services and religious organisations. This will include strengthening of family support services, and use of regular meetings between bereaved families and palliative care teams.
- University undergraduate and postgraduates to undertake courses in Palliative care
- Encourage professionals to venture in research proposal writing in the field of palliative care and bereavement in particular, as well as carrying out of clinical audits into palliative care services.
References
- Aranda, S & Milne, D (2000).Guidelines for the assessment of complicated bereavement risk in family members of people receiving palliative care. Melbourne:Centre for Palliative Care.
- Bowlby, J. (1980). Attachment and loss. Vol. III. Loss: Sadness and depression. London:Hogarth.
- Encyclopaedia of Death and Dying (2014) http://www.deathreference.com/A-Bi/African-Religions.html 23/03/14.
- Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, SymeA,West P. (2002). A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Hospice Palliative Care Association.
- Fraley R. Chris (2010) A Brief Overview of Adult Attachment Theory and Research University of Illinois
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- Kristeller. J. et al, (2014). Grief, Bereavement, and Coping with Loss. http://cancer.gov/cancertopics/pdq/supportivecare/bereavement/HealthProfessional
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- Parkes, C. M. (1996).Bereavement: Studies of grief in adult life (3rd edition.). Harmondsworth,UK: Penguin.
- Schuler. A. T. et al., (2012). Family grief therapy. A vital model in oncology, palliative care and bereavement. Family Matters No. 90 | 77.
- Shirley Firth, (2001). Cultural Perspectives on Loss and Grief Bereavement
- Stroebe, W., &Stroebe, M. (1987). Bereavement and health: The psychological andphysical consequences of partner loss. New York: Cambridge University Press.
- Stroebe. M., &Schut. H., (2005). Complicated Grief: A Conceptual Analysis of the Field.Baywood Publishing Co., Inc.
- Wright. M. P. & Hogan. S.N. (2008). Grief Theories and Models. Applications to Hospice Nursing Practice. Journal of Hospice and Palliative Care Nursing. Vol. 10, No. 6.
