3 - Communication | Oxford Textbook of Palliative Care for Children (Liben, Oxford Textbook of Palliative Care for Children)

Editors: Goldman, Ann; Hain, Richard; Liben, Stephen

Title: Oxford Textbook of Palliative Care for Children, 1st Edition

> Table of Contents > Section 1 - Foundations of care > 3 - Communication

Communication

Gwynneth Down

Jean Simons

An understanding of the concept of paediatric palliative care may be familiar to readers with a specific clinical background or personal interest. Such understanding may not however, be shared by all health care professionals, and we therefore wish to define the territory being described in this chapter with the following:

Palliative care for children and young people with life limiting conditions is an active and total approach to care embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement. [1]

This definition, formulated a decade ago refocuses away from a purely clinical care model to a promotion of patient centred, family needs led, joined up care; the values now promoted in the modernising culture within the National Health Service (NHS) and incorporated into the Children's National Service Framework [2]. For these values to be translated into practice, professionals need to find ways of working with children and families that transcend traditional models of biomedical care. Embracing the psychological, social, and spiritual aspects of their experience requires a focus both on the relationship between professionals and families, and on the skills and attitudes needed. In this chapter then, we will focus on various aspects of communication between children with life limiting conditions, their families, and health care providers. We will suggest that the skills that professionals need when caring for a family in the terminal phases of illness are an extension of those needed for caring for all ill children and thus important for professionals in all fields of health care.

What is meant by communication?

Communication between patients, families and health care professionals has received significant attention in the professional literature. It has been suggested that important patient outcomes such as adherence to treatment, patient knowledge, physical functioning, satisfaction, and health status are all influenced by doctor-patient communication [3, 4, 5, 6, 7]. Psychological adjustment and quality of life may also be profoundly affected by communication between health care professionals, patients and relatives [8].

The term communication , as used in relation to professionals and families in health care, is often associated with specific points on the patient journey such as breaking bad news', or obtaining informed consent . That is, communication is seen as task oriented and often centred on biomedical concerns, rather than as an opportunity for the exploration of psychosocial and emotional issues.

In paediatric palliative care, however, there is a strong emphasis on all aspects of communication with the ill child; the child's understanding of illness and death, what the child is told about the type of illness, or prognosis, whether they are enabled to explore their concerns and worries, and whether the child and family are able to communicate openly about these issues [9, 10, 11]. Communication within families facing illness has, however, traditionally been assumed to be the domain of psychotherapeutically trained professions, rather than that of other health care disciplines. Within family therapy and other psychological fields, there is a growing body of literature about families and illness [12, 13, 14]. This encompasses both the practical, social, financial, and relational impact of illness on families, and the ways in which families may act as a resource to the ill person and to each other, both in practical and emotional domains. There has been a marked change in emphasis in this literature from potential causes of adverse outcomes in children and families to which factors promote resilience in the face of adversity [12, 15].

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Relationships between health care providers and families as a context for communication

Policy and practice in the United Kingdom

Both from within the health care field and on a governmental policy level, relationships between patients and providers have been undergoing scrutiny and culture change. There is a move to change from a service provision orientation to a focus on a user led service, and to rebalance the traditional patriarchal model of health care, in favour of partnership with patients and families [16]. The expertise of patients is being recognised as a cornerstone of government policy for management of chronic illness; an important context for recognising the expertise both of young people with prolonged illness and parents in the case of the young child patient [2].

Changing culture and focus in favour of service users clearly requires different types of involvement: Patients must be at the centre of the NHS, and thus the patient's perspective must be included in the policies, planning, and delivery of services at every level' [17]. The need to consult with children and young people and to provide them with an opportunity to influence decisions and policies-has also been recognised [18]. However, it is important to note that currently much of the work on consultation with young people focuses on the views of well children about potential health care provision.

Models of care in both paediatric medicine and nursing have evolved in accordance with the culture change in health care. There is some evidence that these models have diverged in their emphasis, with that of medical literature being on patient centred medicine [19], and that of nursing on family focused care [20]. As Doherty [21] has suggested, however, every individual patient intervention in health care is simultaneously a family intervention (p. 131). This is particularly true in paediatric palliative care, where the quality of relationships within each dyad of child, siblings, parents, and professionals will reciprocally affect the others [22]. There is then a strong argument for using family centred approaches to paediatric palliative care [23].

However, despite the changing rhetoric in the NHS [24] communications at all levels in the health service have been critically scrutinised in recent years as a result of service failings. Major inquiries with particular relevance to paediatrics. The Redfern report [25], and the Climbie Inquiry [26] have, all, within their own contexts, reported systemic communication failures within health care settings. Communication difficulties between health care professionals and patients and families were particularly highlighted in the first two reports, which focused on particular specialist paediatric settings, but were acknowledged to represent issues across the NHS.

The widespread nature of these problems is also confirmed by evidence from parents and patients in the fields of disability and palliative care. This consistently reveals gaping inadequacies in the basic provision of services, in joined up working, and in the required level of psychosocial and emotional support and communication which families say they need. Voices for Change [18], quotes a parent of a child receiving palliative care It feels like I am fighting a battle all by myself without any training or preparation for this. I sometimes feel like screaming, but no one would listen anyway '

That parents and patients have found a say at all is often through the work of voluntary agencies, especially the condition-specific support groups or charities. Sadly, qualitative evidence of this type has often been dismissed as merely anecdotal and therefore less reliable, so that government policy and the attitude of many health care professionals have been slow to recognise a widespread need.

Parent to parent support, especially in the area of paediatric palliative care and bereavement support, has increasingly confirmed dissatisfaction with the availability or quality of professionally led services. Self-help or parent led services such as the Child Death Help Line, Compassionate Friends or the FSID befriending scheme are examples of families' need for empathic mutual support and communication with others who have experienced a similar situation for themselves. These services represent a positive choice for parent to parent volunteer support, separate from professionally delivered, clinical model, counselling. Condition-specific support groups often accessed through umbrella organisations such as ACT or Contact a Family, provide a family needs led service through the provision of specific information or help lines. Other support services exist for children and young people to derive support directly from one another usually led by professionals or adult volunteers, such as Winston's Wish for bereaved children.

Relationships in the care domain

In the field of psychotherapy, the quality of relationship between therapist and client has consistently been found to outweigh the relative benefits of model-specific techniques or skills, for positive outcome. It is not a surprise then, that the quality of relationships between families and professionals is also central to the experience of living with a chronic illness [27]. Positive relationships may provide hope, physical and

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emotional support and contribute to family resilience [28, 29, 30].

Positive relationships may be achieved by the development of certain skills and attitudes. Knafl et al. [28] suggested that although parents valued the expertise and technical behaviours of professionals, they placed more emphasis on interactional skills. While they needed and valued the expertise of professionals, this was best communicated in a compassionate and respectful manner. Professionals who were able to develop the parents confidence and interact effectively with the ill child were also seen as particularly helpful. By contrast, Hunt et al. [18] found that parents perceived lack of understanding or empathy on the part of health care professionals as a real barrier to providing care for their children. Some parents felt that staff may actually be unwilling to empathise with their situation, thus leaving them feeling less supported in the most difficult times that families may have to experience.

Maguire [31] notes that most doctors and nurses have been alerted to the importance of giving psychological support and alleviating psychological distress yet they will not be able to do this unless they can first establish a dialogue (engage with) patients and identify their true concerns'. His work has consistently shown that health professionals avoid eliciting patient's emotional reactions and views of their current situation for fear of opening up areas that they feel unable to help with [32]. Many doctors and nurses fear that if they clarified how a dying patient was feeling they could unleash strong emotions like despair and anger that they could not contain and to seek psychological problems by active enquiry might overload them . Maguire concluded [33] that the cost of engaging emotionally with a child or family, often without appropriate support within their own work context, might make professionals fearful for their own psychological survival.

Professionals commonly use a variety of distancing tactics with patients, which serve a consistent and important function of (self) protection from the impact of the work. These tactics may be outside of their awareness, but will be picked up by patients and families. Work by Heaven and Maguire [34] showed that adult hospice patients revealed a greater or lesser degree of information about their psychological concerns to nurses whom they perceived as stronger or less fragile as opposed to those who they saw as vulnerable . These serious barriers have to be overcome if communication is to be effective [31]. This is a crucial point; it is often incorrectly assumed that being aware of what is needed and drawing up a practice standard or guideline will somehow enable the job to be done, without commensurate training and support for the carer's competence.

Therefore, in order for staff to engage with the pain and difficulties that families experience when a child has a life-threatening illness, they also need to feel supported emotionally (and their work valued). This may be achieved in many ways, including regular supervision, debriefing meetings', and working in dedicated multidisciplinary teams. Whichever way support is provided, it is crucial that all staff recognise the impact of the work on themselves and each other and do not perceive the need for support as a weakness, but as an integral part of the work of the multidisciplinary team.

Patient and family relationship to professionals

Consideration of only the professional issues that influence positive relationships does not, of course, address the reciprocity of influences from both professionals and families. Family members will have their own history of relationships with authority figures, beliefs about the involvement of others in family business , and patterns of boundaries that allow for more or less connection with professionals.

As children develop, families naturally have to allow their boundaries to be more flexible and permeable, allowing for others (such as teachers, or children's friends), to come and go, bringing in new information. When a child becomes ill, the family boundaries may have to become very permeable indeed, to accommodate physical and emotional involvement, and often personal disclosures and evaluations [32]. In chronic illness and in the later stages of palliative care, the family may have to struggle to keep a sense of their integrity, whilst allowing professionals to be involved in appropriate levels of care and support.

Friedson [36] wrote that the differing perspectives of the partners (to the interaction) must be taken into account and it must be noted that the doctor and patient come from different worlds those of the professional and the layman which possess divergent values and beliefs'. Friedson was somewhat ahead of his time when he acknowledged the importance of examining the dynamics of interpersonal relationships; it is also important to look at roles within their social context and to take into account the influence of extraneous social and other variables '

Thorne and Robinson [18] conducted multiple interviews with families having either an adult or child with a chronic illness. Their results suggested that relationships with health care professionals evolve through three stages that they named naive trust, disenchantment and guarded alliance . In the first phase of the chronic illness, families described believing that professionals would share their own perspectives and

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experiences of the illness. They implicitly trusted that all health care professionals would act in what the family viewed as the sick member's best interests, and they waited passively for this to happen ([18], p. 297). However, in retrospect, all the families felt these were naive assumptions. Their own expectations of what was in the sick person's best interest conflicted with that of professionals, and they often felt that their own knowledge and experience was disregarded. In the disenchantment stage the families often became more assertive or aggressive in their attempts to influence the care provided and their fear, frustration and dissatisfaction was often expressed as anger. This adversarial position is very difficult to sustain because of the need for a working relationship with professionals. Consequently, there was another phase of relationship, named as guarded alliance in which trust was rebuilt on an informed, rather than naive, level and enabled cooperative caring that accommodated both the family perspective and the professional medical perspective ([18], p. 298).

Being aware of the family's previous experiences of health care and relationships with providers can promote understanding and encourage a different response to their anger and distress. While this can also be comprehended (often rightly) as part of necessary emotional adjustment, or even a normal grieving process, it could also be taken as an invitation to professionals to consider their own roles in relation to the family. In order to work in partnership with patients or to provide family centred care, it is necessary first to ascertain and understand families' values and expectations. Wherever possible, care should then be provided according to child and family values, rather than those of the professionals or institutions.

The family and communication

Using the term family may suggest that all of the individuals within it will have the same views and feelings, which of course is often not true. Being able to engage with all family members and recognise their individual needs is a skill that many professionals need to develop. However, the needs of each individual should always be considered within the context of the relationships and connections between them rather than in isolation. It is important to realise that an intervention with one person will also impact on others within the family and that this might be either positive or negative. An example of this might be the ill child being offered individual counselling. While this may offer the child an opportunity to share worries and anxieties, it has the potential to undermine parents' belief in their ability to care for their child's emotional needs, unless opportunities for family discussion are also offered.

Understanding some common themes and dimensions of family life during illness may be helpful to professionals in trying to assess the need for and potential impact of their interventions.

Some of these themes will be around relationships and dynamics prior to the illness: whether the child has had a chronic illness that has meant many previous challenges, the developmental stages of different family members, and the beliefs and meanings that they each give to the illness.

Lifecycle stages

All families need to achieve a balance between stability and change. Family life can provide essential continuity and consistency for family members, allowing them to use the security that this provides to branch out and develop new skills and relationships [37]. However, roles and relationships also need to adapt and change to accommodate developments in the physical, social or emotional life of the family members, thus, all families can be seen to have stages of development in which major adjustment takes place. In considering the impact of a terminal illness on families, it can be helpful to professionals to consider what lifecycle stage(s) [38] the family is in currently. The interrelationship between the stage of family development, and the particular demands of the illness can inform staff about the particular struggles faced by all family members.

Case

John, aged 15 years had a relapse of leukaemia, after 4 years in remission. Over the intervening years, he and his parents had negotiated a path between his developing wish to be independent, and his parents' wish to monitor his wellbeing and protect him. The relapse and increasing realization that the treatments were unsuccessful, led to renewed tension between himself and his parents. He wanted to continue as long as possible to lead the rest of his life as a teenager, spending time with friends and attending school. His parents however wanted to spend as much time with him as possible and to protect him from activities that might be harmful to him.

In this example, the family is negotiating the lifecycle stage of adolescence which in itself requires them to balance the need for protection and independence. The illness further exacerbates this tension and pulls family members in two directions, potentially exacerbating the sense of loss for all the family.

At other lifecycle stages, such as the family having a much younger child with illness, the physical and emotional requirements of the illness may be less incongruent it is more usual for a family to be very closely connected, protective, and inward looking when they have a small child, but this style needs to change to accommodate the independence needs of

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an adolescent. Thus the need to adapt family roles and relationships because of an illness may be part of the losses experienced by the family.

Relational styles and communication

Developmental stages experienced by children and families will influence their communication patterns and styles of relationships, but all individuals and families will have their favoured modes of connecting with others and preferred levels of closeness and distance with others.

On one end of a notional spectrum of relationships, family members may be so close to each other that they may feel that they know what each other, is feeling and thinking without needing to speak about it. This style provides a high level of protection and emotional connection that may be very supportive, particularly in crisis stages of an illness. However, a disadvantage may be that in more chronic phases of illness, a child's independence is discouraged or the possibility of different views and ideas being expressed is limited. Thus parents may find it very hard to accept that their child is expressing worries or fears to staff of which they are unaware. Staff may perceive parents as overprotective and wish to separate the child from them, to address their fears. It is however very important that the staff support the family's strong connections, rather than moving in to rescue the child. Helping parents to talk appropriately with their children may provide a better long-term solution where the child is able to express his or her feelings to those closest to him or her.

While some families appear very close, others place a higher premium on autonomy and independence. They will find it easier for children to express different views and to have their individual styles recognised adolescents with unusual hairstyles, clothes and piercings may be very acceptable. In the extreme, however, families with this style may find it harder to connect emotionally, to give and receive support under times of enormous stress and may even pull further apart.

Case

A 16 year old boy was waiting for the results of a biopsy which would confirm the spread of cancer to his bones. His mother asked that he be told this separately from her as she felt that he dealt better with things on his own.

Patterns of cutting-off emotionally from each other, or indeed of forging deeper connections during times of immense stress, may each be part of repetitive scripts in families [37]. Our scripts for how to be in relationships, when loss is threatened, are influenced by previous family generations, although some may make a conscious effort to change relationship patterns if they have not been helpful in the past. While few families will have had to negotiate the pathway to a child's death before, they may use signposts from other experiences to help them.

The challenge for the family is how to allow professionals to support the child and themselves, and yet keep a sense of privacy and family integrity [35]. When the child dies, the family's losses will include the relationships with professionals who the family may have known for many years. As with all other interventions, it is important to ascertain the family's own wishes in relation to connections with professionals after a child's death, and which rituals, if any (memorial services, cards, phone calls) would be experienced as helpful. It is important for health care professionals to consider how their own particular styles affect how they may judge family relationships.

Family beliefs and meanings

The experience of illness will always be mediated by the meanings that are attached to it [39], as will the family responses [40]. The values and meanings attached to illness can be very powerful factors in a family's adaptation to the illness and child's death. Parental coping and family resilience have, for example, been linked to the ability to see beneficial aspects of a child's illness, such as the family becoming closer or positive aspects of the child's personality being highlighted [41].

Understanding the meaning that different family members attach to the child's illness is crucial to developing a partnership between the family and helping professionals, yet this is an area of potential difficulty for professionals who may not feel that they have the skills to elicit views about illness. In usual medical consultations, individual or family beliefs are seldom explored, rather professionals often focus on the physical aspects of the patient's story and do not feel confident or skilled enough to address other areas [42, 43].

Although families will have received information from professionals about the illness, this may be very different to their own views or beliefs about it. It is important to elicit their understanding of what the illness is, how it arose, and what course they think it will take; not only in medical terms but in its connection to family history, spiritual, or societal meanings.

The value given to talking about illness and death, for example, may highlight different levels of meaning. In many Western developed countries, the professional community now largely holds the belief that open disclosure to child and family is usually the right course. This, however, constitutes a major change in practice from 20 to 30 years ago when a poor prognosis (or even the diagnosis) was withheld from patients. Stories within families of how the illness of older family members was managed historically may influence how they think about their current situation. Some may fear that telling the ill child or their siblings that they have a serious illness will

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frighten them, make them give up on life, or will somehow jinx the situation so that death will happen sooner. For others, talking with relatives about their illness may have brought them closer, and enabled past relationship difficulties to be overcome.

Some illnesses have negative cultural/societal meanings; HIV being a commonly cited example [44]. Family members may not wish their child to know the diagnosis, both to protect them from emotional distress, and from the potential harm of stigma on them and other family members [45].

Illness may also impact on how family members think about their own roles and relationships. A strongly held belief in most societies is that parents (or other adults) should protect children from harm, and a life-threatening illness challenges this role in the most fundamental way. Parents may often feel guilty and in some way responsible for the child's illness that there is something they should have done, or not done, to prevent it. When there are genetic factors in an illness, the risk of guilt may increase, and covert or overt blaming by others may occur. There is a very human need to find an answer to the question why? and to find an outlet for anger at the unfairness of the child's illness.

For some a focus on what (or who) caused the illness may even be a way of feeling in control if they can reverse the cause , perhaps they can cure the illness.

Case

A mother appeared frantic in her attempts to prevent her daughter expressing any negative emotions, such as anger, distress, or fear. While staff initially understood this as the mother attempting to protect herself from her daughter's feelings, it become clearer one day when she told a nurse that she believed that her acrimonious divorce from the child's father had caused her daughter's cancer;that negative feelings had become cancerous, and were therefore dangerous.

Gender may also be an important context for considering how family members react to illness, and how they communicate with both professionals and each other. Men, women, and boys and girls are brought up with different messages about the expression of emotions, roles in childcare, and styles of relationships. If this context is ignored, there is a danger of family members being pathologised for reactions that might otherwise be seen as normal. An example of this would be the tendency for mothers sometimes to be seen as over involved and fathers, perhaps, as disengaged [46].

The culture of the family (and that of professionals) will also profoundly affect both communication and experience of illness and health care [47]. There is a need for professionals to be aware of their own culturally informed aspects of belief and practice, and to develop culturally sensitive practice towards people who have different beliefs to their own. It is likely to be unhelpful to view certain ethnic groups as holding particular health beliefs, as this may only contribute to stereotyped (and perhaps mistaken) assumptions. However, the use of skills advocated throughout this chapter in identifying needs and values and negotiating care, are a necessary part of culturally sensitive practice.

For families who do not speak English, or have it as a second language, the regular and consistent provision of interpreters is essential. Even when a child is in his or her last few days of life, interpreters may be used only for special meetings and not provided as part of routine care. How communication can be truly effective or supportive in these circumstances is difficult to understand.

Communication, children, and young people

When considering communicating with children and young people about life-threatening illness, many will immediately think of the issues of disclosure about diagnosis and prognosis. Strong feelings are often aroused, guided by personal and professional beliefs about the relative value of open communication and the need to protect children from potentially devastating news. Fredman [48] has commented that alongside strong professional beliefs about the need for children and families to discuss illness and death, paradoxically, the death taboo in Western society provides a strong injunction against talking about it.

Over the last 20 years, evidence of the benefits of talking with children openly about illness is increasing. Sharing information in chronic illness has been linked to less depression in ill children, and increased social competence in siblings [49]. An open approach to disclosure in childhood leukaemia was also shown to enhance psychological adjustment in children and their families [50, 51]. Not telling did not reduce stress in the children, but may have increased their isolation and anxiety [50].

In some illnesses, such as HIV-related conditions, diagnostic disclosure presents many complex ethical, medical, social and psychological implications [52]. These are dimensions that professionals and families struggle with in many illness situations, and individual negotiation with each family should still be undertaken.

Children's cognitive and emotional understanding of illness and death is linked to their cognitive developmental level and to their own exposure to these experiences [53, 54]. Kane [55] identified approximate ages at which children develop components of a mature concept of what death means, including irrevocability, universality, causality, and the effects of death on appearance and function. Lansdown [9] has suggested guidelines for stages that children may go through

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in their developing understanding of their own life-threatening illness, ranging from the understanding that they are ill, through the realisation that their type of illness can cause children to die, to the realisation that they themselves are going to die. Bluebond-Langner [54] has proposed that even very young children may reach this understanding if they have themselves experienced bereavement or are suffering a life-threatening illness.

In addition to cognitive developmental approaches, others have described phases of emotional processes that are experienced by dying or grieving people [56, 57]. While all of these models may help to guide professionals in communicating with children and families, Fredman [48] cautions against using them as normative views of the way that dying or grieving should be done . She suggests that such theories and policy has dominated helpers relationships with clients and suggests considering that many professionals have different personal beliefs that should alert them to the myriad ways that it is possible to die or grieve well .

While many of the same issues arise in communication with children as with adults (e.g. the need to elicit their understanding, views and wishes), there will be a greater reliance on nonverbal communication with younger children or those with specific communication difficulties or learning disabilities. Ill children and their siblings may experience a range of feelings in the face of serious illness, including fear, anger, shame and distress about body changes, resentment of others who are well or getting more attention, and the wish to protect and be protected. These feelings may be exhibited through general behaviour and play rather than being verbalised directly.

Case

A 6-year-old child (Lucy) undergoing a second course of chemotherapy for leukaemia, showed her distress about the side-effects by angrily chopping the hair from her favourite doll.

Providing opportunities for children to use play or drawing can be important ways for them to show their feelings. This can be as important for siblings as for the ill child. While staff need to be alert to the meaning contained within play, it is important to ask the child, or to suggest comments tentatively rather than to interpret what they have done.

Case

Lucy (above), had two brothers, one aged 10 (Tom) and the other age 4 years (Ricky). Whilst they were all in the playroom of the treating hospital, Lucy drew lots of shapes on the page. When the play specialist tentatively suggested that they looked like blood cells, Lucy beamed and said that she was drawing leukaemia. Tom became very interested in this and said my friend at school says you can die of leukaemia'. As he said this, all three children looked at the play specialist to see how she would respond.

The regular provision of opportunities for play with a trusted adult can enable children to express feelings, thoughts, and questions. As in this example, children may test out what it is possible to say to professionals, as also to their own family members. They are often very adept at picking up emotional nuances and avoid areas that may upset others.

Case (contd.)

The play specialist gave an honest answer to their question saying that this did sometimes happen, and asked them what they thought and felt about this. Lucy was able to say that she didn't mind dying, as she would see her aunties and grandparents in heaven. She was however, worried about how her parents would manage without her. Ricky however, asked when he would get leukaemia.

This example illustrates that even young children may have thought a lot about their illness without adults necessarily being aware of this. Lucy had known two other children who had died of leukaemia and this linked with her brother's information from his peers. It is important to note that we cannot assume we know what children's anxieties about death will be, as Lucy's fears were less for herself at that time and more for her parents. The example also shows that siblings may have worries or fears that also need to be explored. In this case Ricky had donated bone marrow to his sister and linked the operation to catching leukaemia . Other children may believe that they have caused the illness in some way one 5-year-old child, in-patient in hospital, was told that another child had died of something wrong with his tummy. Later he commented anxiously that he had tickled the other boy's tummy. He was then reassured that he had not caused the problem.

Case (contd.)

The play specialist was concerned to know what to do with the information she had about the children's anxieties and worries, and discussed this with a nursing colleague. She was then able to go back to the children, ask them if their parents were aware of what they had discussed and get their agreement to tell the parents. She chose to tell the parents on their own in private. The mother immediately burst into tears, and was comforted by her partner.

Professionals may be concerned about how much of children's anxieties to share with their parents, if they were obtained separately. Asking the children's views is one way of going forward. It may be important to talk to parents separately, to allow them time to react and adjust away from the children. It may be that this can then facilitate all family members to

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talk together more openly, depending on their style of communication.

While exploring anxieties about open conversations ( talking about talking ), it is crucial that professionals respect families style and do not push them into situations in which they cannot sustain their support because of their own beliefs about the right way to do things.

Families may also communicate their knowledge and feelings to each other with stories, metaphors and play situations [48]: a dying child asked his mother what she would do if he became a little bird who pecked at her window . She responded that she would be delighted to see him and would give him food and water every day . Without mentioning dying directly they were communicating about this very effectively, and within their own spiritual belief system.

Young people

Adolescents will of course, have different needs to those of young children. The increasing need for privacy, control, and independence in adolescence, may contrast strongly with the physical dependency of illness. In this context, limit testing behaviour, often seen as a normative task of adolescence in western societies, may extend to relationships with health care staff and affect adherence to treatments. Whereas conflictual relationships at this life cycle stage are seen as almost normative in the west, they may be particularly painful for all concerned when death is also in mind.

While peer and sexual relationships may also be strongly in focus for healthy young people, those with life- threatening illness may be more isolated and depend on family and professionals for social support and companionship. Experience in hospices and voluntary organisations suggests that bringing young people together for treatment or recreation can be helpful in providing mutual support [58]. As many ill or disabled young people have extra concerns about their body image at a time when this is developmentally perceived as crucial, this may also help alleviate that particular stress.

Young people may have a fuller understanding of their illness, and how their family and friends are affected by it, than younger children. While they may be preoccupied with concerns about their own life and future, they may wish to protect their loved ones from their pain and anxiety and thus be left alone with these worries. As with younger children then, it is important that opportunities are given for adolescents to discuss and explore their feelings. It may also be very helpful to comment to the family and young person together that the process of mutual protection is very common and normal, which may paradoxically allow them to overcome this barrier.

Siblings

While the child and parent(s) may be the focus of professional attention, siblings can often be sent to other relatives or friends to be cared for. They may then lose parental attention and closeness at the time when their own anxieties may be at their highest and they may not feel that they can express their own concerns or issues for fear of upsetting other family members. One study suggested that nearly half of well siblings did not talk to anyone about the life-threatening illness, while only 38% talked to their parents [59]. Grandparents or other trusted adults may be able to take up this role.

Professionals may need to facilitate parents' consideration of the siblings needs, as there is a tendency for them to underestimate the effect that the illness is having on them [59].

Siblings may receive less information about the illness partly because they are not around to hear the less formal conversations that take place in health care settings over time, as also because they are considered as not so much in need by family or professionals. A study of the siblings of children who died of cystic fibrosis reported that many had no idea about the seriousness of the illness, sometimes until death actually occurred [60]. Even where the seriousness is known, siblings have their own needs and may show great resentment towards the ill child, creating tension with their parents ( how could he be so awful when she's so ill?') complicating their reaction when death occurs. Others may take the role in the family of the joker , who does something cute when family stress is too high, or may deny their own emotional needs and sink into the background.

Professionals need to try to hold the entire family in mind, assessing all members needs both individually and as an interacting unit [61].

Interactive communication skills training

All health care staff who treat children should also be trained in communicating with young people and parents. [17]

Learning from Bristol (ibid) recommends broadening the notion of professional competence to include non-clinical aspects of care in the key areas of education, training and continuing professional development, including a key skill in communicating with patients and with colleagues there should be more opportunities than at present for multi professional teams to learn, train and develop together'.

Humphrey [62] concluded that there is relatively little detailed advice or recommendations specifically about the

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provision of psychosocial support or counselling for parents except in the context of life-threatening illness or bereavement'. It is in this field, especially in hospices or in oncology units, that many communication studies have been based. Medical sociologists have also extensively examined communication issues between health care professionals and patients. Friedson [36] confirms a widespread assumption that communication problems between a doctor and a patient were often to do with the fact that the doctor was usually a highly educated male and the patient often was not.

He concluded: It is my thesis that the separate world of experience and reference of the layman and the professional worker are always in potential conflict with each other.'

Studies of nurse/patient communications have examined attitudinal issues revealing more of what patients expect and appreciate in terms of the characteristics of a good nurse . Bailey and Wilkinson [63] found that almost all patients valued a kind, caring attitude but overall, the study found that nurses lacked the skills to elicit and address the (oncology) patients' main concerns, many of which were not disclosed to the nurses in the study.

Heaven and Maguire [34] have also found that health care professionals made assumptions about patients concerns which if not discussed or checked out with the patients may lead to an overestimate or underestimate of the true situation'.

Recent guidelines from the Department of Health (DOH), Kings Fund and elsewhere collated in the BMJ [64] indicate that better communication could be achieved by giving more information in several media.

Of course giving accurate, honest information is a very important aspect of communicating effectively with any patient, but in order to effectively engage in realistic shared decision-making, information from the patient also has to be elicited and included in the discussion. Coulter [65] writes' shared decision making at the clinical level is the foundation stone in which all the other efforts to promote a more patient centred health service must rest '.

Research on aspects of health care professional's communication and interactive skills has shown that in the case of information giving it is rare for health care professionals to be able to check effectively the patient's understanding and adapt their own discursive style accordingly. What very often happens is that information is repeated, perhaps in even greater detail than previously if the patient appears to fail to understand. A nurse quoted in the Nursing Times [66] said, if a patient does not understand a procedure you get the surgeon to speak to them again . .'Other studies consistently show that, when giving information, health care professionals tend to do most of the talking leaving little time for listening to patients views and eliciting their understanding.

Shared decision-making with children may be even more problematic. Even if their views are expressed they may not be respected or understood, as it is difficult for many to acknowledge childrens' own experiences and to respect their judgement. The assumption that children are too young to make their own decisions until they reach the somehow magic birthday of 16 years is still a prevalent idea. Lansdown's work, [9] illustrating a grid of possibilities for shared decision-making with children and young patients, offers an important tool for paediatric palliative care. It respects the important knowledge that, in the case of children who have themselves experienced serious illness and bereavement or who are undergoing their own illness process, such children form a mature competence and understanding at a much earlier age than health care professionals would normally consider appropriate. Sanz [67] found the same issue on the topic of preventative medicine' children up to eleven years old seldom attach a preventive value to drugs and they find it hard to understand why someone should take drugs when not actually being ill. [But] quite a different picture is drawn by children with asthma .' Children as young as seven years old were able to give clear explanations about their disease, the drugs used and their main characteristics, how they work, when they should be taken and at which doses. Sanz goes on to discuss research showing that there is much room for improvement for doctors direct communication with children . He concludes that achieving concordance with children is demanding, but most rewarding, and requires stamina and flexibility from health professionals .'.

ACT (Ibid), in their study, recognised that when young people felt most ill they were not really capable of truly shared decision-making with the health care staff When I was in the hospital, I would have valued my mum being there as I constantly had to explain many different things; this took a lot out of me whilst feeling so ill .' Young patients receiving palliative care, like all people who are seriously debilitated by chronic or life limiting illness, may find themselves disem-powered and excluded'. In this field user's views have generally been represented by voluntary groups rather than directly ' [68].

The entire issue of health care professionals' communication with patients of any age is bedevilled by the debate as to what constitutes communication skills . Much is made of the fact that medical students now undergo communication skills training at under-graduate level, but teaching is still patchy and inconsistent across all medical schools. Boohan [69] showed that there was still a very wide range of interpretation of the communication skills curriculum ranging from an

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integrated course over the 5 years of study at some medical schools to lectures in the final year, probably from a psychosocial professional on breaking bad news, in some other centres. Her study also revealed a lack of consistent communication skills training once doctors qualified and graduated into postgraduate medical education. Maguire [70] found when looking at the interviewing skills of recently qualified doctors, that though most of them could give simple information on diagnosis and treatment, there were virtually no attempts made to obtain patients' views or to check whether a patient had understood what had been said or to categorise the information given'. Maguire stated that unfortunately the doctors were weakest on the techniques that have been found to increase patient satisfaction and improve their compliance with medical advice and treatment'. These techniques include discovering the patients' own views of their illnesses and their expectations of treatment and, sadly, also the doctors reluctance to discover the patient's views of their predicaments and to mention prognosis parallel their tendency to avoid asking them about social and psychological aspects'. Maguire concludes that when these doctors were medical students they had not learnt to communicate effectively and sensitively with patients'.

A common assumption is that this issue of communication is confined to breaking bad news or bereavement care. Communication is of course often focused around these issues in acute health care settings, and many authors have written extensively about the skills required in order to break bad news effectively [71]. However, the concept of the patient journey in paediatric palliative care provides a useful illustration that the two specific points of the diagnosis and eventual need for bereavement support are certainly not the only times when communication skills are required.

It is obvious that there is a need to communicate all through the patient's life cycle, from the shock and grief of diagnosis, through financial and lifestyle changes, family relationship dynamics, the child patient's understanding, sibling issues, patient autonomy issues, acute hospital admissions, operations, transition episodes, disease exacerbations, time of death and terminal care decisions.

Even though in paediatric palliative care professionals and many families assert that bereavement begins at diagnosis, it is also clear that the focus on death or impending death, even though it may be inevitable, is certainly not an appropriate one for the majority of families, who for large tracts of the child's life wish to normalize their situation

Fig.3.1

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or try to minimise the negative aspects of the child's condition [73].

Numerous personal communications indicate that professionals confuse the term palliative'with terminal , and assume therefore that someone who is skilled or qualified in bereavement counselling needs will best meet the families' communication. This qualification in itself may be seen as the province of a psychosocial member of the health care team. Doctors, nurses, and others in the health care team who do not normally have such qualifications may often feel deskilled in what might be a very appropriate desire to engage with the patient in discussion of time of death or bereavement issues. Personal communication again has revealed several instances of nurses who have been supporting a family successfully for months or even years, who, when the child has become terminally ill felt that they have needed to introduce another professional into the family in order to engage in the activity of pre-bereavement counselling .

Because of a professional wariness around the topic of bereavement nurses have often said that they don't feel qualified or confident to engage in this apparent extension of their role. This is a great pity as a recent study [74] concludes that the preferred key supporter is the person or team they have known best and with whom they feel the greatest rapport, because of their years caring for the child. This need not mean a professionally qualified person but may be a volunteer.

It is important to recognise that families have consistently said they value continuing support in their bereavement . If this is not forthcoming then naturally families may feel abandoned and isolated in their grief. It may be a mistake, however, to construe their request as a need for bereavement support per se. A careful assessment of the family's individual needs should be undertaken by a key worker and ongoing support needs agreed upon. Dent and Stewart [75] propose that nurses, midwives, and health care professionals should have the basic communication skills required to meet the needs of newly bereaved parents and families. Their work focuses on babies and young children who have died a sudden death, but the principles addressed are entirely relevant in paediatric palliative care. The authors discuss what they call considerations for practice , and do not recommend any particular qualification or indeed method of assessment or support work, but emphasise that the health care professional engaged in the support must have the interactive skills to be able to assess accurately with the family the meaning that they attach to the illness and death of the child according to their own beliefs, culture and life cycle factors. The authors make an important point, however, that is, crucial to communication in paediatric palliative care. They acknowledge that professionals and lay people alike may actually be frightened of engaging with patients and families when a child is dying. A health visitor [75] said that many in her profession are hugely ill prepared and consequently dread the job of supporting bereaved families.

The benchmarking of best practice currently underway in nursing to establish an appropriate level of what are called interpersonal skills for nurses states that all health care personnel demonstrate effective interpersonal skills when communicating with patients and carers. Further it says appropriate and effective methods of communication are used actively to promote understanding between patients and carers and health care personnel'. The benchmark goes on to identify detailed examples of what the appropriate and effective methods of communication may be and laudably details the kinds of issues that the health care professional must consider and address , but there is little concrete guidance on how to evince these skills in practice. There remains a gap between recommendations for practice and competence in the delivery of care. The skills must be identified, learnt, and practiced, not merely theorised. The key is always appropriate engagement with patients; no shared decision-making can happen without a confident use of evidenced interactive communication tools'. Without these tools, the issues that block appropriate communication with adult patients are emphasised when attempting to engage with children, even many paediatricians and children's nurses find it hard to assess children's competence, engage in informed consent, promote the child's best interests, or truly encourage the child's voice in shared decision-making. Many instead take refuge in distancing tactics, or in a false apprehension of the legal status of their professional obligations, for example, the child doesn't have to be engaged in a discussion about consent if he or she is under 16.

Real engagement with the issues raised by the Children Act 1989, the UN Convention on the Rights of the Child, or indeed the Children's National Service Framework (NSF) and its recommendations for joined up working across health care, social care, and education remain hollow without a real commitment to the training and application in the tools of real engagement.

Faulkner, Maguire, Heaven, and others have examined communication competencies in several settings and evidenced consistent issues: what health care professionals do, what they fail to do, and the effects of their actions.

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Approaches that enhance communication include:

hearing and recognising patients' cues
asking open questions, particularly psychologically or emotionally focused ones, to elicit the patient's feelings and concerns
reassuring appropriately only after the patient's problems have been explored
negotiating and clarifying the conversational agenda.

These result in the patients feeling that they have been sympathetically heard and respectfully treated. None of this is new, all of it is recognisable as good, effective listening skills .

Conversely, approaches that compromise communication include:

distancing tactics
blocking tactics
false reassurance
premature solution finding
changing the subject
ignoring patient's cues
sticking to discussion of physical as opposed to psychological or emotional topics
making assumptions about patients views, feelings, and concerns, rather than exploring them actively.

Maguire [33] suggests that it is appropriate to view people as robust and capable of working through difficult predicaments albeit with appropriate help, rather than as fragile and susceptible to harm'. This is an important point in relation to the alleged paternalistic attitudes revealed during the Bristol Royal Infirmary (BRI) inquiry and in the debate about organ retention. Parents from the Bristol Children's Heart Action Group were very angry at what they reported as the paternalism of the cardiologists and surgeons in keeping from them the real risks of proposed operations. Similarly parents said, I would probably have agreed if I had been asked', (to allow organs to be retained for research), but the assumption that parents would find it too difficult to engage in discussion about their own child's post mortem angered and disgusted many.

Maguire concludes that active exploration of patients' cues, feelings, and concerns is more effective than encouragement to give their story with few interruptions. He concludes that guesswork about concerns, whether gleaned from non-verbal cues or unexplored verbal cues, is often inaccurate; that when distress is shown, it is inappropriate to assume the cause of distress, and reassure before the nature of the distress has been properly explored. Furthermore, an empathic understanding manner does not lead to more disclosure, only active elicitation of feelings as a response to cues achieves this.

Summary

Although there has been emphasis in this chapter and elsewhere on the types of skills needed to improve communication between professionals, patients, and families, it is important that such skills are viewed as contributing to, but not synonymous with, relationships between these groups. In addition, it is important to recognise that all behaviour is communication it is impossible for us not to communicate even if we say or do nothing [76]. When professionals feel lacking in confidence to engage with families facing the deaths of children, their avoidance of them is a communication, as is the ability of some staff to be with a child or family without speaking, or carrying out unnecessary tasks. Questions that we ask or don't ask of children and families reveal a great deal about our feelings and beliefs. We are constantly communicating, in ways that may be outside of our conscious awareness.

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