Throughout the observation placement, the writer involved directly with the Family Support Team which provides confidential support for people who have been diagnosed with a life-limiting illness, and their carers. The team is made up of a social worker, counselors and volunteer support workers who are more than willing to listen and assist with the stresses, difficulties and changes that may occur while living with a life-limiting illness. The loss of a significant other causes some people experiencing difficulties to cope with such an experience and ended up in grief situations. This has perceived as normal, but when they have trouble resolving their feelings that later hinder their ability to resume to a normal life, counselling often helps them bring their grief to a more effective resolution (Worden, 1991:37). According to Currer (2002), working with people who are dying or bereaved may invite different responses from the specialist and mainstream social workers. Specialist social workers - usually working in palliative care settings - have to deal with the question whether they are the best possible people to address death and bereavement issues. Currer (2002:211) writes that the “questions about the social work contribution may therefore, centre less on what is the appropriate response and more on who is best placed to offer this care.” It is arguably that at some point it can be seen as if the role of a counselor may outshine the function of a specialist social worker. Whilst the contribution of a specialist social worker in such an area is argued, it is vital to note here that the social workers are the ones responsible to “conducts the initial psychosocial assessment in the unit” and serve as a ‘case manager’ before referring the case to a counselor (Hayslip and Leon, 1992). In lieu, the Association of Palliative Care Social Workers (APCSW) states that:
Specialist palliative care social workers offer a wide range of support to patients and families from practical help and advice around income maintenance, debt counselling, help with housing and accessing other services, through to advocacy, individual counselling and group support. (APCSW, 2006:6)
Currer (2002) suggests that the mainstream social workers who are working with terminally ill people or grieving families need more time than can be offered in the present climate of social care. She also argues that death and bereavement are not the main focus of involvement for them. In contrast, Payne (2004:10), finds that social workers in hospices tend to be particularly concerned with “…resolving problems, or where complexities or risks were seen to arise from social or psychological problems” rather than medical issues. Further, Payne asserts that social workers usually undertake a “brokering role”, liaising with external non-NHS agencies and voluntary bodies. Clearly, there are a myriad of factors that differentiate each patient and family from one another. Each factor should be assessed by the interdisciplinary team utilizing the skills and background of each team member in formulating care plan, arranging for the coordination and delivery of hospice services, monitoring the effectiveness of these services and perhaps reevaluating the care plan as the patient’s physical or emotional status warrants (Hayslip and Leon, 1992:62). Analytically, the crisis or cases will always be different and in the issue of dying and bereavement, these are certainly an everyday episode that will arise in the course of social work practice in all areas.
With cancer and Motor Neuron Disease (MND) cases received the highest referrals; XY Hospice strives to provide three major services – hospice at home, day care and in-patient care. Hospice at home is provided for people needing a sitting service, practical nursing help and counselling. Day care is provided for the local community within the hospice local area. It offers a range of treatments, therapies and activities. Services such as massage therapy, acupuncture, aromatherapy, reflexology, special bath, library, hairdressing and manicure are used to complement the treatment provided for patients. The hospice's in-patient unit has 6 community palliative care beds. The unit provides respite care, pain and symptom management for patients on its own. This means that some patients will have local access to beds, while at the same time retain contact with their regular District Nursing team and their own General Practitioner (GP). This encourages continuity of care with easy access to the Specialist Palliative Care Team (Consultant in Palliative Medicine and Macmillan Nurses), at the hospice.
During the reflection on the writer’s observation placement in XY Hospice, he remembers having the interests in knowing the best practice theory or methods in dealing with death and dying. Albeit sporadically documented, there is little doubt that “Kubler-Ross is the most familiar name associated with death and dying” (Walter, 1994). Kubler-Ross’s (1970) five stage theory of dying has placed great importance on understanding how dying persons cope with their terminal illness and eventual death. This stage of dying consists of (i) denial (ii) anger (iii) bargaining with others (God) in order to prolong life (iv) depression and (v) acceptance. With this five-stage model, Kubler-Ross (1970) never purports a linear process of dying, yet the strong normative strand that exists in her work goes beyond description to give a prescriptive course of feelings, and hence has been opened to misuse in practice (Walter, 1994; Corr, 1993). Most significantly, this model is criticised for depending on “psychoanalytical diagnostic categories” (Walter, 1994:74), which portrays dying as a psychiatric illness. Attacking this model for its lack of focus on the whole person, Corr (1993:78) argues that coping with dying is “not just a matter of dealing with feelings. It involves the full range of the dimensions of behaviors that have been identified in good hospice care: physical, psychological, social and spiritual.”
Payne (1997:101) cites that in an event of loss and stressful event such as death of loved ones, crisis intervention and task-centred models are the appropriate approach for a social worker to work with. According to Parker and Bradley (2005:106), “crisis intervention provides a unique opportunity to work towards constructive change, to intervene in order to optimize social functioning and enable choice and participation and to provide appropriate services.” However, crisis intervention is not the only method often use with patients in a palliative care setting. The Life Review method is also considered as a technique best used by a social worker in reducing the emotional pain and improving life satisfaction of a dying patient (Lester, 2005). The method which was first conceptualized by Robert N. Butler in 1963 is a “personal process by which a person evaluates his or her life as it nears its end” (Doka, 2002). In this method, the process is described as a “naturally occurring, universal mental process.” It also assumes that “the revived experiences and conflicts can be surveyed and reintegrated” (Butler, 1963:66 cited from Woolf, 1998). In this method, Lester (2005:69) identifies the themes documented below as the most significant in people’s life:
- the family
- one’s career, lifework (or both)
- health and body image
- the role of money
- love and hate
- sexual identity
- experience of loss including death
- goals and achievements
- the basis of the individual’s meaning of life, set by values and beliefs
Using the structured framework, the social worker’s aim is to help the person recall, interpret and review past experiences within the narrative context of the Life Review process (Lester, 2005). Precisely, no particular theory can offer a complete basis for practice; however, these models and methods are potentially helpful in shaping an eclectic approach that informs social work practice and multi-professional intervention with individuals and families. This practice is hoped to be successfully and effectively integrated in health and social setting as documented from the End of Life Care (2008) report.
The End of Life Care report which was published by National Audit Office in November 2008 stated that there are approximately 470,000 people die each year in England, with almost two-thirds of who are aged over 75 years. There are significant differences for the place of death between age groups. Comparing between hospital and care home, hospice death rates are the highest for people aged 45 – 64 and cancer patients are more likely to die in hospices. In the same report, the Department of Health states that all people approaching the end of their life should be able to access high quality end of life care irrespective of diagnosis. Although the patients consulted for the report were positive about their experiences of using hospice services, some were found reluctant to use the services because they considered hospices to be institutions predominantly focused on providing in-patient care to those nearing death. In other cases, a common theme was the issue of pride and the belief that others were more deserving of services. This report similarly mirrors the writer’s findings during the observation placement at XY Hospice. The social worker there claims that some people do views hospices as a religious organization. Contrary to that believe, XY Hospice tries to offer its services to all regardless of religion, race, creed, colour and sexual orientation. The End of Life Care report also suggests that the integration of the end of life care services between agencies involved in health and social services should be commissioned strategically. This is certainly important, as patients reaching the end of their life often move between care settings and require services from a number of providers, making continuity of care more difficult to achieve.
Funding is also another pivotal factor in running a hospice, as emphasized in the End of Life Care Report (2008). Using data from surveys and analysis of accounts carried out by ‘Help the Hospices’, the report estimates that in 2006-07, the expenditure by independent hospices’ in England was £500 million. As an independent charity, it costs XY Hospice approximately £1.5 million per annum to provide the professional services that are currently available. However, XY Hospice does currently negotiate around 30% of their funding from the government. This leaves over £1 million a year or almost £19,231 per week in which they must raise from various fundraising events to continue providing the vital services. Without proper funding, running an agency that provides free comprehensive services for terminally ill patients is definitely unattainable. Aware of the funding problems, The Department of Health in the End of Life Care Strategy (2008) has allocated more than £286 million of extra fund for 2009-10 and 2010-11, in order to provide a high quality care for people approaching end of life. This allocation is deemed to be worthy as it will certainly be evaluated from every aspect including to the point of a service user.
The evaluation of services from XY Hospice is also being revised regularly, as they ask feedback from the patients and their family members. The quality of service is targeted to be improved every time the multi-disciplinary team meets. The Consultant in-charge will ensure the delivery of services from everyone is in line with their ‘Mission Statement’ (see Table 1 in Appendix). Every feedback from the nurses and volunteers is crucial as they spend more time with the patients. From the observation placement, the writer was able to establish a rapport with Jonathan (pseudonym). As a patient who has been receiving more than 5 years of treatment from XY Hospice, Jonathan claims that his motivation to improve his quality of life increases every time he steps inside the hospice. Being diagnosed with Motor Neuron Disease (MND), Jonathan feels that his life is reaching the ending point at the age of 46. Being an engineer and a golf and rugby enthusiast, he feels pressured to cope with a different lifestyle. Sharing the experience, he expresses his frustrations when his wife abandons him after the bleak diagnosis. Blessed with two children, he is currently living with his son who is also a carer. The optimism in viewing his life starts to afloat, when he was first referred to XY Hospice by his GP. He received several counselling sessions and the much needed support from everyone in the hospice. Although from the nurses’ reports his condition is deteriorating every week, Jonathan never regrets or expresses his sadness anymore compared to before. He come to the hospice twice a week for a daycare session and enjoys the acupuncture therapy provided by a professional registered acupuncturist. In Jonathan’s own word, “the services and facilities in this hospice made me quickly feel that I was appreciated and very much alive.” With a natural setting of beautiful landscape surrounding an old English bungalow, the XY Hospice has successfully created an ambience in which the patients can find comfort and solace as if in their own home. It is apparent that, the hospice is at a distinctive juncture both in providing treatment and making the patients comfortable. Clearly, it attempts to ease patients in trying to adjust with the practical, psychological and emotional changes in an unfortunate event of a terminal illness.
For more than 23 years, XY Hospice has provided a great service to the local community. Gradually, the premises and facilities have grown alongside with the quality of service that they have offered. Likewise, the short observation placement has provided the writer an opportunity to experience and be part of a dynamic team that is championing the cause for end of life care. The observation also provided an avenue to learn about death and bereavement issues within a different setting and culture, distinct from the writer’s. Indeed, the writer will treasure the words uttered by a bereaved man who expressed his gratitude to the hospice, “When I came here, I found empathy, not sympathy”, and that was enough to prompt the writer to reflect and ponder about the new dimension in appreciating the quality of life.
Word count: 3096
Appendix
Table 1
References
Association of Palliative Care Social Workers (2006) Introduction to Palliative Care Social Work, Bristol: APCSW
Clark, D. (1998) ‘Originating a movement: Cecily Saunders and the development of St. Christopher’s Hospice 1957-67’, Mortality, 3(1): 43-63
Corr, C.A. (1993) ‘Coping with dying. Lessons that we should and should not learn from the work of Elizabeth Kubler-Ross’, Death Studies, 17, pp.69-83
Currer, C. (2002) ‘Dying and bereavement’ in R. Adams, L. Dominelli and M. Payne (eds.) Critical Practice in Social Work, Basingtoke: Palgrave Macmillan
Doka, K.J. (2002) ‘Living with grief: loss in later life’ in K.J. Doka (ed.) Hospice Foundation of America
< >
(accessed on 21st March 2009)
Downey, L. (2008) ‘Lesson in life and death from a poor relation’, Professional Social Work, October 2008, pp.22-23
Hayslip, B. and Leon, J. (1992) Hospice Care, Newbury Park: Sage
Hearn, F. (2005) ‘Excluded and vulnerable groups of service users’ in P. Firth, G. Luff and D. Oliviere (eds.) Loss, Change and Bereavement in Palliative Care, Berkshire: Open University Press
Help the Hospices (2009)
<> (accessed on 21st March 2009)
Kubler-Ross, E. (1970) On Death and Dying, London: Tavistock
Lester, J. (2005) ‘Life Review with the terminally ill – narrative therapies’ in P. Firth, G. Luff and D. Oliviere (eds.) Loss, Change and Bereavement in Palliative Care, Berkshire: Open University Press
National Audit Office (2008) End of Life Care, London: The Stationery Office
Poulton, N.J. (2008) ‘Helping people to die’, Professional Social Work, July 2008, pp.12-13
Payne, M. (1997) Modern Social Work Theory, Houndmills: Macmillan
Parker, J. and Bradley, G. (2005) Social Work Practice: Assessment, Planning, Intervention and Review, Exeter: Learning Matters
Payne, M. (2002) ‘Coordination and teamwork’ in R. Adams, L. Dominelli and M. Payne (eds.) Critical Practice in Social Work, Basingtoke: Palgrave Macmillan
Payne, M. (2004) ‘Social work practice identities: an agency study of a hospice’, Social Work Practice, 16, pp.5-15
Walter, T. (1994) The Revival of Death, London: Routledge
Woolf, L.M. (1998) Life Review, Webster University
< >
(accessed on 21st March 2009)
Worden, J.W. (1991) Grief Counselling and Grief Therapy, London: Routledge
