Palliative Care and Communication User,

Palliative Care and Communication

User, patient and public involvement have all gained high priority in public policy and services. The Calman Hine Report in 1995 paved the way for user involvement in palliative care by recommending that cancer ser- vices should be patient-centered (Department of Health 1995). The National Health Service Cancer Plan (Ramsey & Blieszner, 1999) encourages user involvement in the context of recognizing the quality of cancer services as a national priority. There is a broader emphasis on patient/carer experiences and satisfaction with services.

The UK government has established a Commission on Patient and Public Involvement for the NHS, headed by a 'participation czar'. In 2003, the government established a major NHS consultation - Choice, Responsiveness and Equity in the NHS and Social Care - which placed a specific emphasis on patient and user involvement and which directly involved service users in eight officially appointed task groups, including one focusing on long-term conditions, which addressed palliative care issues (Aday, 2005).

These developments have taken place within a wider context of government emphasis on user involvement and service users being at the centre of health and social care services. This has encouraged the development of user groups and organizations across a wide range of health and social care service users, including, notably, disabled people, mental health service users/survivors, older people, people living with cancer, people with learning difficulties and people living with HIV / AIDS. There are, however, some significant and interesting contradictions about user involvement in palliative care. Palliative care, notably as embodied in the hospice movement, has always emphasized the centrality of the patient or service user and its own 'holistic' approach to provision and practice. It has highlighted its concern with the individual's physical, social, psycho- logical and spiritual needs. It has historically placed an emphasis on 'voice and choice', concepts which have subsequently gained a prominent place in the health and care lexicon. As one of the founding figures of the hospice movement, Dame Cicely Saunders said that one of its principal and explicit aims was to provide a 'voice for the voiceless' (Henry, et al. 2005).

Nevertheless, it can be argued that hospice and palliative care have been slow to address 'user involvement'. Except for the development of patient satisfaction surveys, whose helpfulness as a form of user involvement is open to question, it was not until the late 1990s that user involvement really emerged as an issue in palliative care, with the beginning of public discussion, organized events, publications and the commissioning of research (Chadiha, 2000). By contrast, user involvement was a legislative requirement in social care from the early 1990s and participatory developments in that field can be traced to the early 1980s. Similarly, schemes for user involvement in mental health services were under development from the mid-1980s, and in the field of disability from the 1970s (Aday, 2005). The pressures against participation Because no research studies have been undertaken, it is possible only to speculate why hospice and palliative care may have come late to user involvement. One explanation might be the feeling that 'we are doing it anyway' - the sense that patients are involved routinely - following from the long-standing commitments in this field to listen to the patient/service user and to act as an advocate for them. However, offering a voice is not the same as accessing people's own voice.

Another explanation may be that, while multidisciplinary and committed to a holistic way of working, palliative care has tended to be medically led. Health services more generally have been slower to address issues of participation than social care services. The latter are now acknowledged to have had a pioneering role in this field. But this still would not explain why palliative care came later to participation than some other areas of health specialist, for example mental health. It is the third possible explanation that seems the most likely. Hospice and palliative care services work with two groups of people who are seen as particularly vulnerable in society. These are people with life-limiting ill- nesses who may be facing death and people who are either facing bereavement or have been bereaved.

Thus palliative care service users are at very difficult times in their lives, having to cope with massive change, fears for the future and possibly financial uncertainty. For some it may mean having little time and feeling weak and very ill; for others, coping with loss and perhaps the prospect of loneliness and isolation. It would not be surprising if workers and agencies were reluctant to place additional burdens on service users who can already be seen to have other difficulties and preoccupations (Baarsen & Broese van Groenou, 2001). Furthermore, death, dying and loss are still areas of taboo in western societies. Workers and managers do express particular concerns about involving palliative care patients and service users. Issues are raised about how meaningful such involvement may be at the 'end-of-life stage' of people's illness.

There has also been a significantly pessimistic strand in academic and research discussions of user involvement in palliative care. Fears have been raised about such involvement being stressful, unhelpful and coming to be seen as an obligation (Henry, et al. 2005). These are important issues and need to be addressed. So far, however, they have not followed from research findings and there is no evidence base for them. Research work so far has also been based on very small numbers. Initial experience in contrast, where attempts have been made to involve service users with careful planning and preparation, there has been an enthusiastic response. This has included people with different conditions, who are very ill and with little time to live. There have been some significant recent developments. In 1999, a national seminar on improving quality and developing user involvement in palliative care was held (Ramsey & Blieszner, 1999). This was jointly organized with current palliative care service users and attended by a majority of service users. User involvement was made the subject of the National Council Annual Awards scheme in 2001.

This led to the establishment of a User Involvement Panel, hosted by Help the Hospices and composed of palliative care service users and others. The Panel developed and ran a series of educational regional seminars on user involvement, culminating in the first national conference on this subject held in 2003 (Zink, et al. 2003). Progress in developing user involvement in palliative care is undoubtedly being made. However, these events have also highlighted, through contact with a wide range of managers, practitioners and service users that it is still at an early stage, patchy in implementation and raising a number of concerns and uncertainties from service providers. At the same time, most of the large, independent palliative care and related organizations, including Marie Curie, Macmillan Cancer Relief, Help the Hospices, the National Hospice Council and Sue Ryder Care, have variously developed their own policies and initiatives for user involvement. It is important at this stage neither to over- or understate the progress that has been made (Lalive et al. 2003).

What is likely to be most helpful is some critical consideration of major concerns being raised in relation to this issue. The aim in this chapter is to explore user involvement in palliative care in the broader context of theoretical and practical developments, drawing on a wider range of policy areas. People's feelings about involvement need to be put into context. There is no question that participation can be a negative and unhelpful activity (Henry, et al. 2005). Arnstein's development of a ladder of participation has long highlighted this (Ramsey & Blieszner, 1999). Her ladder descended from 'citizen power', through 'placation' to 'manipulation'. But such deficiencies are less to do with the inherent nature of participation itself and more to do with what participation constitutes and what purpose it serves in any given situation. Palliative care service users who get involved generally seem to value the activity. However, only a small proportion of such service users have responded to invitations to get involved.

But this is true of most groups - both of service users and of other people. We are likely to need to look to broader structural issues for an understanding of this, including the fact that we live in a representative, not participatory, democracy, where many people do not expect and are not accustomed to 'getting involved' in formal public policy or state-related activities. Equally, reservations have traditionally been raised about the involvement of many 'vulnerable' groups. This has frequently been the case in relation to people with learning difficulties, particularly those seen as having 'profound' or 'multiple handicaps' or who did not communicate verbally. But there are few groups this has not been raised in relation to during the course of the modern development of participation policy and practice, including children and young people, mental health service users / survivors and others who have experienced long-term institutionalization (Wu & Schimmele, 2005). Concerns have been raised that such groups would not be able to contribute, would be liable to manipulation, be left exposed and would experience distress as a result. No body of evidence has developed to support these concerns, influential though they have been.

It is helpful to recognize that they are not new issues, but have frequently been identified and applied to many groups and individuals. Such concerns have often been associated with traditions of 'protecting' (vulnerable) service users, issues of 'gate keeping' by service providers and paternalistic health and welfare cultures (Brownell, 2006). This is in sharp contrast to more recent thinking that patients and service users should have the chance to be 'co-producers' of their own welfare.

Stress, Anger in Communications

Although most assessments of bereaved children have not included symptoms of traumatic stress, recent reports of these symptoms as a component of some children's responses to loss have made them a necessary part of grief assessment and intervention. The study of trauma and grief emerged from different practice experiences and theoretical frameworks. Only in the past two decades have the simultaneous constellations of trauma and symptoms of grief been identified as a risk factor for longer-term adverse outcomes (Chadiha, 2000). The proposed diagnosis of traumatic grief in children indicates that symptoms of trauma interfere with their grief. For example, remembering the lost person generates intense feelings of terror; consequently, helpful reminiscing is avoided. In this way, images of a gruesome or violent death may interfere with more positive memories. Conversely, feeling frightened and vulnerable also can elicit grief as children remember the strong care- giver who is no longer available to protect them. 'Traumatic grief' has been used to refer to conditions in children that manifest consequences of both grief and trauma (Wu & Schimmele, 2005). Investigators suggest that when symptoms of trauma and bereavement are present at the same time, it is advisable, and often essential, to address and at least partially resolve the symptoms of trauma before the bereavement issues can be processed successfully (Zink, et al. 2003).

This is now being questioned by more recent findings. The presence of symptoms of trauma may not interfere with the child's ability to grieve. In Aday's, (2005) study of children whose parent or sibling committed suicide, the children's depressive symptoms were not prolonged by the presence of symptoms of trauma. Preliminary evidence from our work with the families of New York City firefighters who died suggests that because the two constellations of symptoms are often intertwined in children, the two may need to be treated simultaneously. Finally, current studies of traumatic grief responses in children and adolescents are exploring therapeutic approaches that will lead to the resolution of manifestations of both trauma and grief (Chadiha, 2000). An important first step in reaching this goal is to identify the presence and intensity of these responses.

The Expanded Grief Inventory, developed by Yorgason, et al.( 2006) at the University of California at Los Angeles, is a measure that, in our experience, shows great promise because it categorizes the components of the traumatic grief experience as uncomplicated grief, complicated grief and traumatic responses to the death of a loved one. What is the role of qualitative methods in bereavement research? An important methodological development over the past decade has been the inclusion of more systematic and sophisticated qualitative strategies used in research with specific sub-populations of bereaved children to increase understanding of variations among subgroups, contextual variables and bereaved children's thought processes. To identify patterns of responses to loss and to adjust interventions accordingly, these strategies include grouping children on the basis of their developmental attributes rather than arbitrary age-related categories (Wu & Schimmele, 2005).

Other important subgroups of children include those who experienced an expected vs. unexpected death; a death by suicide or homicide; the death of a parent or sibling, a public catastrophic death, such as occurred on 11 September 2001; and multiple terrorist events in affected countries. Such methods hold promise for moving the field to a new level of understanding: one that integrates population-based mediating variables with how those variables interact to affect individual outcomes differentially (Baarsen & Broese van Groenou, 2001). Because qualitative methods can also be used to explore the total ecological context in which death occurs, they make it possible to address questions about complex situations, such as the need for intervention as stresses are occurring and at different levels of social organization: individual, family, school, community and larger governmental structures. Should intervention models change in duration, intensity and complexity? Increasingly, studies have concluded that recovering from grief is often a longer and more varied process for both children and adults than is commonly understood in western culture.

With adequate resources and social support, the majority of bereaved children demonstrate few negative mental health outcomes in the short run - 14 months to 2 years after the death of a parent (Beach, et al. 2005). However, three studies have reported an increase in children's symptoms and problem behaviors after two years, highlighting the need for longer- term research to understand more fully possible delayed reactions and the influence of loss on children's functioning over the course of development (Yorgason, et al. 2006). For some children, each new stress may exacerbate, in a cascading fashion, previous levels of stress and perceptions of vulnerability that overwhelms their capacity to cope.

Certainly, children and adolescents living in high- crime environments are more likely to experience multiple and over- whelming traumatic stresses. For all children, new, more sophisticated developmental abilities and added developmental, cultural-ecological demands have the potential to evoke the memory and the grief of previous losses in new ways as they mature.

What remains unclear is whether and how losing a parent in childhood may create a greater vulnerability to later life events and transitions. In which children does the death increase negative expectations and intense feelings of hopelessness and helplessness in the face of stressful situations or reminders of the loss? Conversely, which children are likely to develop greater confidence in their ability to cope with stress as they master successive related challenges? The world changes dramatically for most children after a parent's death, whether the death was the result of illness or an unexpected and traumatic occurrence. Multiple other changes take place that may only become apparent to the children over time. Their surviving parent may become depressed or unable to help them learn and develop, as the parent who died was able to do. They may have to move from the family home (Brownell, 2006). They are faced with constant reminders of something missing in their lives: the guidance, support, affection and strength formerly provided by the lost parent. Therefore, interventions need to focus not only on helping children with their grief over the lost relationship and the lost parent's specific functions but over the secondary changes that are a consequence of the death as well.

It may also feel difficult to communicate openly when relating to someone who is clearly in pain or is so tired they cannot concentrate. It may feel particularly difficult to know what to say when the person with whom one wishes to speak requires onerous attention or seems to impose suffering on the lives of others. In such situations, anger, resentment and guilt may remain unacknowledged for fear of altering the fragile balance of the family. In other contexts, it is issues related to sexuality that might be more difficult to think about. Some find that illness alters their expectations of sexual relationships, particularly where there is a paralysis, chronic pain or marked physical disfigurement. Even with psychosexual counseling aimed at exploring other ways of pleasing one another, the shock of the condition and change in appearance may leave partners reluctant to recreate or simulate the physical intimacy they once had (Yorgason, et al. 2006).