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How far has the hospice movement gone in achieving its original goal?

   
   

To begin this paper I would like to explore the origins of hospice and palliative care and the philosophy behind these concepts. The model of hospice care was popularised by Cicely Saunders in the 1960’s although, there is evidence to show the existence of hospices in Europe as early as 1842. These original establishments were predominantly organised and run by religious orders such as the Irish Sisters of Charity who founded Our Lady’s Hospice in Dublin.

Whilst ideas of compassionate care for dying people appeared to be the basis for these first hospices, Dame Cicely Saunders took this concept much further. When she opened St Christopher’s Hospice in Sydenham, she established a tripartite system which incorporated: the practice of palliative care; education through training; and research programmes into symptom control. In her publication ‘The founding philosophy’, Saunders states: ‘In the hospice movement we continue to be concerned both with the sophisticated science of our treatments and with the art of our caring, bringing competence alongside compassion’.

 This statement seems to reflect the common philosophy of the hospice and palliative care movement. These ideas of holistic care-giving are also mirrored in a more recent definition of palliative care by the World Health Organisation (WHO), which states: ‘Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount’ (National Council for Hospice and Specialist Palliative Care Services, 1997).

It could be said that hospice and palliative care is therefore to be accepted as a combination of the ‘medical model’ of care alongside ideas of psychological, social and spiritual well-being. Though, if the hospice movement grew out of a reaction to the ‘medicalization’ of death perhaps these ideas need to be examined. It may also be worth considering the way in which the term is interpreted by individuals.

Mary Bradbury’s observations in her article ‘The good death?’ demonstrate how ideas of medicalized death can be highly subjective. She points out that good palliative care in the form of pain relief can be thought of as a ‘natural death’ by those working in the medical field. Conversely, others may regard a ‘natural death’ as having complete control over the process of dying, with limited medical intervention.

Alternatively, perhaps the term ‘medicalization’ was socially constructed to mean something which is not regarded as natural. In other words, the term was given a common meaning and associated with an unnatural process. It could have been perceived that, although death was an inevitable part of life, the ‘medical model’ sought to intervene and turn death into a failure to cure illness. Moving away from ideas of ‘medicalization’ may have meant the acknowledgement of death as a natural process which could be accepted and managed within a holistic approach.

There are clearly different views about what constitutes a ‘medicalized death’ but, since Dame Cicely Saunders identified that a large number of people died in hospital surroundings, perhaps her original concept was simply to offer a less clinical setting. Her vision seems to have centred around a bespoke service for dying people: places of refuge where they could find a sense of belonging and meaning, along with consideration for the emotional impact on friends and family.

It is interesting to consider how far this original holistic vision of compassionate care, medical research and education, along with bereavement care, has changed and developed. Since Dame Cicely’s original concept of hospice care, services have expanded into outreach provision within patients’ own homes, care homes and hospitals. There are also hospital-based specialist palliative care teams, in-patient units and palliative day-care centres.

Much of the work is now carried out within the mixed economy of care, including privately run homes, hospices funded by charitable donations and statutory health services. This has led to an enormous diversity of service provision and has enabled palliative care to be more accessible to many dying people in need of specialist cancer care. One example of this type of care is the work of the Cancer Relief Macmillan Fund, which supports Macmillan nurses. There are also many specialist care teams who adopt a multi-disciplinary approach to their work, and they include doctors, nurses, social workers, therapists, volunteers and clerical staff.

Palliative care has also evolved in terms of the ‘holistic’ care of dying people and now incorporates a vast number of different approaches. Robert Buckman in his article ‘Communication in palliative care’ explores the psychology of interacting with patients, their friends and family. He feels that emotional health is very much related to physical health and that understanding the emotions of patients is the key to good communication. He regards training in this area as vitally important and states: ‘a professional who feels ill-equipped and inept at communication will become part of the problem instead of part of the solution’ (Reader, Buckman, p146).

Many advances have emerged from the original concepts of science-based research and development. The introduction of devices such as ‘syringe drivers’ has revolutionised pain control. The syringe driver is a small piece of equipment which can deliver specific drugs to the patient, subcutaneously, over a 24-hour period. This is an efficient system, which enables patients to be more mobile and avoid the discomfort of regular injections. Perhaps of greater significance is the way in which this innovation has allowed patients, in need of regular pain control, to remain in their own homes.

It would seem that the original hospice and palliative care movement has made many positive advances within the 20th century. However, the movement is not without its critics, many of whom have cited the following problems: lack of service planning, lack of objective evaluation and limited vision, leading to medicalization.

Perhaps this first criticism relates to the emergence of hospices through the fundraising efforts of local communities rather than a planned service. This type of growth clearly leads to an imbalance of provision and may then influence the evolution of outreach services. The second criticism concerns the lack of evidence that hospice and palliative care services are any more effective than conventional methods. The final criticism is perhaps more wide ranging and concerns the very core of hospice philosophy. It questions whether the original holistic concept is being diluted and becoming dominated by the medical model of care.

 Perhaps other concerns relate to the narrow field of palliative care, which appears to cater predominantly for terminal cancer rather than other life-limiting illnesses. There may also be unease about the image of hospices as accommodating the white, Christian, middle-classes to the exclusion of ethnic minorities or diverse religions.

In conclusion, I feel that the original philosophy of hospice care has been retained to some extent, and ideas of managing death with greater skill and sensitivity have been widely adopted. As a result of this philosophy, the ideas of palliative techniques appear to have had a positive impact on the care of many dying people and their relatives. This in turn has led to revolutionary developments in medical science and alternative therapies and treatments.

However, it seems clear that hospice and palliative care services also have their limitations and continue to face problems in some areas of service. Not least are the issues of: geographical distribution of hospices; evaluation of services; and the perceptions of exclusivity with regard to the dominance of cancer care. Other concerns may centre on a loss of vision and direction, leading to a decline in the original philosophy of holistic care. As with many areas of health provision, there is also the danger that the more conventional ‘medical model’ will come to dominate at the expense of new creative and innovative forms of care.

Reference:

Bradbury, M., (2001) ‘The Good Death?’ in Dickenson, D., Johnson, M. and Samson Katz, J. (eds) Death, Dying and Bereavement: A Reader, London, Sage.

Buckman, R., (2001) ‘Communication in Palliative Care’ in Dickenson, D., Johnson, M. and Samson Katz, J. (eds) Death, Dying and Bereavement: A Reader, London, Sage.

(2004) Death and Dying: Life and Death, Milton Keynes.

Katz, J., Komaromy, C., (2004) Death and Dying: Caring for Dying People, Milton Keynes.

Tookman, A., Kurowska, A., (2000) Palliative Care Handbook, Milton Keynes.

   
         
       
         
       
         
 


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