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Year : 2005  |  Volume : 11  |  Issue : 1  |  Page : 2--5

Definition and evaluation: Developing the debate on community participation in palliative care

Fiona Graham, David Clark 
 International Observatory on End of Life Care, Institute for Health Research, Lancaster University, United Kingdom

Correspondence Address:
Fiona Graham
International Observatory on End of Life Care, Institute for Health Research, Alexandra Square, Lancaster University, Lancaster - LA1 4YT
United Kingdom

How to cite this article:
Graham F, Clark D. Definition and evaluation: Developing the debate on community participation in palliative care.Indian J Palliat Care 2005;11:2-5

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Graham F, Clark D. Definition and evaluation: Developing the debate on community participation in palliative care. Indian J Palliat Care [serial online] 2005 [cited 2020 Jul 10 ];11:2-5
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In this paper, we set out to do three things. First, we will explore some ideas about what is meant by the two key words 'community' and 'participation'. Second, we give examples of 'community participation' in palliative care, particularly in relation to the involvement of young volunteers. Third, we consider the evaluation of the approach and the implications of this for service development. In doing so, we draw on some concepts from the social sciences, as well as the comparative perspectives of the International Observatory in End of Life Care.[1]

 The meaning of 'community participation'

What do we actually mean by the term 'community participation'? There are, of course, many definitions of what is meant by community. It can refer to those residing in a defined geographical area. It may signify those bound together by faith, politics, or ideology. Or it may be an indicator of groups that share a specific culture, sense of identity, or worldview. One helpful distinction is between 'communities of place' and 'communities of interest'. The former are based on specific localities or territories. The latter bring together those who have some belief, value or practice held in common, but who are otherwise geographically dispersed.

When the International Observatory on End of Life Care was founded in 2003 as an initiative to promote the development of palliative care in the poor regions of the world, we quickly discovered that there were others in many countries who shared in our goal. We came to call this a 'community of effort', working together towards a shared vision. More recently our work has been referred to as a 'community of hope'.[2] When we use the term 'community' in this way, we are making an appeal to something which transcends the boundaries of place and culture, but sees a sense of unity in a set of values held in common - in this case a belief that appropriate care at the end of life is something that all human beings deserve and is something worth striving to achieve. Indeed, there is a sense in which palliative care itself can be seen as a global community made up of many different forms of collaboration - between individual clinicians in different parts of the world, or hospices that are 'twinned' together for mutual support, or through the work of donor organizations that support development through third party financing.

At the same time it is easy to idealise communities as having special virtues - warmth, friendliness, support. Communities can also have their darker sides - disagreement, violence, tension; and communities can be in conflict with each other - across the divides of social class, religion, or territory.

Similarly, there are different notions of what we mean by 'participation' and these can often have ideological overtones - one person's 'participation' can be another's 'coercion'. It is helpful to distinguish between two forms of participation. The first of these we can think of along the lines of 'participation as collaboration'. In this model the community is 'persuaded' to work with an outside agency in return for some expected benefit. The outcome is a pragmatic partnership for a mutual interest. The second is 'participation as empowerment'. Here there are deeper goals that lie beyond the initiative itself, such as the development of skills, confidence, greater autonomy and a stronger collective voice. By this distinction we can think of community participation as a means to an end or as an end in itself.

The history of palliative care shows several different orientations to 'community participation' in specific settings that have developed around the world. Within the public health approach developed in Catalonia[3] there appears to be little scope for community participation, in a model which is largely 'top down' and professionally driven. By contrast, in the UK volunteers are heavily involved in hospice work but are chiefly engaged as a source of free labour with limited influence on wider service improvement or development.[4] Conversely, the early development of hospice care in the USA with a very strong sense of community involvement seemed to lead to the marginalization of the professions and over-dependence on 'lay' perspectives. One collection of writings offers a wide-ranging set of reflections on the role of volunteers in a variety of hospice and palliative care settings, and places a strong emphasis throughout on the importance of 'professionalism'.[5]

 The debate about 'community participation' in palliative care

There seems to be a growing debate about 'community participation' in palliative care. For example, Gupta recently posed the question 'How basic is palliative care'?[6] following an international workshop on community participation in palliative care in northern Kerala, India. Concerned that the work undertaken by the volunteers on this programme was not, in fact, palliative care but 'basic' care she suggested that the community participation approach is aimed at 'quantity' and not 'quality' of care. This assumes that 'basic' care is, by definition, inferior an assertion subsequently disputed by Lee who felt that basic care, such as the simple task of washing a patient, could be highly skilled and holistic if approached in a thoughtful and caring way.[7] Gupta was also suspicious of western practitioners' enthusiasm for the programme whilst emphasizing the importance of specialist palliative care provision in their own settings. This suggested that, although inadequate for the 'developed' world, the community participation model would suffice for the 'developing' world. However, this is not necessarily the case, with some western practitioners envious of the apparent successes of community participation and considering it a possible way of improving access to care at the end of life, even in rich nations,[8] as well as bringing benefits to the community itself.[9]

 Some examples of 'community participation' in palliative care

In some places, community participation features strongly in palliative care provision. The project, which sparked the above debate, The Neighbourhood Network in Palliative Care (NNPC) in Kerala, is one example, which has been described.[10] One of its most striking features is the apparent engagement of the wider community with the project and the enthusiasm of those involved. A visible subgroup of the projects' volunteers are the students, or 'Palliative Care on Campus' groups, who contribute to the rather different demographic profile (young, with large numbers of men) to volunteers in countries such as the UK[11] and Australia[12] (predominately older women). Yet, there are published examples in the 'developed' world where the potential of this group has also been recognized and the possible benefits to the wider community acknowledged. The Hospice Teen Volunteer (HTV) Programme at the Hospice of the Florida Suncoast, USA, is one interesting example. This hospice considers itself 'unusual in the degree to which they have collaborated successfully with a wide variety of community institutions to integrate care of the dying into the life of the community',[13] (p. 117). Established in 1994, the HTV programme has around 250 student volunteers who have structured training and undertake a variety of tasks. Basic orientation training is completed by all volunteers, but if a student is to be involved directly with patients and families a more detailed course is required. This endeavours to cover issues such as communication skills, symptom management and the volunteer's role in spiritual, psychosocial care and bereavement, with all members of the professional multidisciplinary team involved in training. This is followed by an interview with the programme coordinator who assesses the effect of training and tries to ensure the student is placed in the most appropriate setting. Support after training is provided by volunteer co-ordinators, who also organize monthly support meetings for volunteers of all ages. This ambitious programme seems to have been successful because of the close collaboration between the hospice, the local schools and the wider community and the high priority given to it by the hospice, exemplified by the employment of a full-time co-ordinator. Indeed, almost by way of underlining their commitment to community involvement, they also take individuals sent by the courts for 'community service', some of whom have stayed after their required time period.

At the University of Washington USA, it has been seen that working as a volunteer within a hospice programme can be beneficial, on a variety of levels, to students of health sciences (medicine, nursing, social work), thus emphasizing the reciprocal nature of such activities. Their innovative, multidisciplinary programme is 'taught as a partnership among the departments of family medicine medical history/ethics and three community hospice programmes'.[14] Again, the students have a structured training course and supervision, with many subsequently having home placements. The aim of the course is to promote understanding of hospice philosophy, team working and caring skills whilst providing a valued service. A challenge to establish and evaluate, the course is now oversubscribed and claims to offer the opportunity for reflection, considered essential to the development of 'professionalism'.[15]

These examples suggest that young people are keen to participate in palliative care within their communities and that the challenge is to harness this effectively. In reality, this is not always the case. In a study of college students in Canada,[16] the researchers found that, although students were positive about volunteering generally, the majority were not interested in becoming involved in the care of the dying, considering it too emotionally demanding. This was particularly marked among the male students. Indeed, even the Florida and Washington programmes offer an incentive for prospective volunteers - fulfilment of course requirements - to initially engage the students.

What is clear from the above examples is that much work and organization is needed for these programmes to be effective, as well as a degree of pragmatism in emphasizing the mutual benefits to individuals, patients, families and society of community participation in palliative care. These assumptions, however, needs to be verified by a thorough evaluation of the effectiveness and acceptability of the approach whatever the setting.

A major factor contributing to the debate on the place of community participation in palliative care would seem to be the specific tasks undertaken by volunteers on such programmes. In Florida and Washington, as well as in UK hospices, volunteers provide emotional and social support to patients and families, respite care and practical support. Few would argue with the value of this in properly trained, skilled hands. But, the community participation as envisaged in Kerala by the NNPC involves volunteers in personal care and assessment of patients and, on reflection, it is this aspect, which is particularly controversial. In researching this article we were unable to find other published examples of volunteers working in this way. It is important that any such groups are identified, so that their experience can be included in any evaluation of this innovative approach to palliative care. This approach crosses professional boundaries and has the potential to threaten roles within teams, but when professional resources are very limited, this argument might be considered of less relevance. Informal care of the dying occurs in communities anyway, all over the world. Could the community participation model pave the way for this to be more informed, trained and organized?

 Evaluating 'community participation' in palliative care

The answer to this question lies in the rigorous evaluation of community participation in palliative care. What are such services actually doing? What are their aims; are they realistic and are they achieving them? Is the approach acceptable to patients and families and are they benefiting as a result? Is the training and assessment appropriate? Are volunteers working effectively in partnership with professionals? This research could have important implications for service development across a range of settings. It could help ensure that those in resource poor settings are not being offered inferior care and that the opportunity to expand and enhance the care of the dying, even in areas with well-developed specialist palliative care, is not being missed. It could help establish whether or not community participation in palliative care is an important component of appropriate, good quality palliative care. If so, perhaps community participation in palliative care could be seen as part of an inclusive, multimodal, overlapping approach to care at the end of life with patients receiving different types of care at different stages of their illness journey. Such a model might be illustrated in [Figure 1].

References Accessed May 2005.
2Wright M. Palliative care in Europe: a view across the borders. 9th Congress of the European Association for Palliative Care. Plenary Lectures; Aachen, Germany April, 2005
3Gómez-Batiste X, Porta J, Tuca A, Carrales E, Madrid F, Treils J, et al . Spain: The WHO Demostration Project of Palliative Care Implementation in Catalonia. Results at 10 years (1991-2001). Journal of Pain and Symptom Management, 2002;24:239-44.
4Clark D, Small N, Wright M, Winslow M, Hughes N. A Bit of Heaven for the Few? An oral history of the hospice movement in the United Kingdom. Lancaster: Observatory Publications, 2005.
5Doyle, D (Ed) Volunteers in Hospice and Palliative Care: A handbook for service managers . Oxford: Oxford University Press, 2005.
6Gupta H. How basic is palliative care? Int J Palliat Nurs 2004;10:600-1.
7Lee G. Response to 'How basic is palliative care?' Int J Palliat Nurs 2005;11:156-7.
8Berry P. Response to 'How basic is palliative care?' Int J Palliat Nurs 2005;11:157-8.
9Graham F, Clark D. Addressing the basics of palliative care. Int J Palliat Nurs 2005;11:36-9.
10Kumar S. Palliative care can be delivered through neighbourhood networks. BMJ 2004;329:1184.
11Hoad P. Volunteers in the independent hospice movement. Sociol Health Illn 1991;13:231-48.
12McKinnon M. The participation of volunteer in contemporary palliative care. Australian Journal of Advanced Nursing 2002;19:38-44.
13Mahood S and Romer A. The Hospice Teen Volunteer Program at the Hospice of the Florida Suncoast. Journal of Palliative Medicine 2001;4:117-28.
14Farber S. Hospice volunteer training for health science students: An Academic Medical Center-Hospice Community Partnership. Journal of Palliative Medicine 2001;4:60-4.
15Simpson D. Editors Note: Dilemmas in Palliative Care Education. Journal of Palliative Medicine 2001;4:59.
16Claxton-Oldfield S, Tomes J, Brennan M, Fawcett C, laxton-Oldfield J. Palliative care volunteerism among college students in Canada. American Journal of Hospice and Palliative Medicine 2005;22:111-8.