37 - International aspects

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

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

Copyright 2006 Oxford University Press, 2006 (Chapter 34: Danai Papadatou)

> Table of Contents > Section 4 - Delivery of care > 35 - Place of care

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35

Place of care

Lynda Brook

Jan Vickers

Muriel Barber

Introduction

If we consider the child and family's palliative care journey from the diagnosis of a life-limiting condition, through to death and bereavement we will note numerous problems and challenges along the way. The parents or carers will need help and support in all aspects of palliative care, including symptom management, practical support, psychosocial and spiritual care, at different times and to different extents, in order to achieve the best quality of life for their child.

The primary objective of palliative care is to support the child and family to allow them to maintain resilience and cope, from the time of diagnosis, particularly at times of crisis and at the end of life. The care provided should be tailored to the needs and wishes of the child and family, but inevitably must be delivered within the constraints of available health care staff, facilities and resources. Ideally, care will be delivered with minimal disruption to normal everyday life, such as at home or in school; however, at times care in hospital or hospice will be necessary. The care must be co-ordinated, with emphasis on prompt and effective inter-professional communication, and be flexible enough to adapt to changes in the child's condition and the family's need for support.

This chapter is based upon the models of care in the United Kingdom, but the principles will be applicable widely in the context of different health care systems. We consider the benefits of maintaining structure and normality for the child and family and how these may be threatened by changes in care needs. We examine how care needs are determined, including the wishes of the child and family, and assessment by members of the multidisciplinary team. We then explore how these needs are best met by examining the roles of available carers, including parents and professionals in different care settings.

Maintaining normality

Minimizing disruption

Many families of children with a life-limiting condition will tell you that above all they want their child to be seen as a person first rather than diagnosis [1]. But much of the child's or young person's life is likely to be dominated by their condition and its repercussions on day to day activities. Coping with these problems can be enhanced if the child is cared for at home or in as normal an environment as possible [2]: keeping the disruption of everyday family life to a minimum, and helping the child and family to maintain some sense of being in control [3, 4, 5, 6, 7]. However, much can also be done to develop and implement these important coping mechanisms when the child is in hospital or hospice.

Good social networks

Those children and families that have good social networks, with strong family and interpersonal relationships [8], and those that seek social support in times of crisis [9], have greater resilience. There is greater chance for these social networks to develop, if the child is able to be cared for in normal environments such as home and school. These environments also provide structure and nurture stronger social and family relationships.

Family communication and cohesion

Caring for a child with a life-limiting condition puts immense strain on family relationships. But families that are able to communicate openly and honestly are more able to adapt and cope better [10]. Families that have to spend better part of the day travelling to and from hospital experience greater disruption to family life [11]. Communication is more difficult as often one parent stays with the child being cared for in hospital.

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Taking control and making choices

Confronting problems [9] and taking control have both been demonstrated as important coping strategies [12]. Families illustrate this in their desire to make choices about the care that the child receives. Taking control and making choices are both facilitated when the child and family are in a familiar environment [6, 13].

Flexibility: Changes in condition over time

Maintenance periods of stability

For many children with life-limiting conditions, especially non-malignant diseases, there are periods of months or even years when they are relatively well and clinically stable. It is entirely appropriate that they should remain at home with minimal trips to the hospital, hospice or clinic as required and take part in more normal activities such as attending school [14, 15]. Although the situation may be relatively stable, it is likely that the child and family's needs will change either gradually over time or suddenly. It is therefore essential that the situation is reviewed regularly, keeping all those involved in care up to date, in order to provide a prompt and co-ordinated response to these changes.

The challenge of providing effective care in these maintenance periods is to provide a level of care and support appropriate to the needs of the child and family; avoiding feelings of abandonment [16] but ensuring that multiple appointments do not disrupt normal family life unnecessarily. There may be considerable ongoing needs such as caring for a highly physically dependent child, administering numerous medications and treatments on a daily basis and coping with chronic symptoms such as pain [1] that have an impact on quality of life. These patients can usually be cared for at home but the mental and physical stress on the family is considerable [17] and short (respite) breaks from caring are invaluable in maintaining family resilience.

Gradual deterioration

Many children with life-limiting conditions, for example those with neurodegenerative conditions, experience a gradual deterioration over months to years associated with a corresponding increase in care needs. Home adaptations and provision of special equipment may be needed to cope with increasing physical dependency. Some children may need to change from mainstream school to a school for children with special needs [18]. Key events such as the transition to wheel-chair use, or a change in school are particularly distressing for the child and their family as they emphasise the progressive losses that they face [19, 20]. These children and families often have an extensive multidisciplinary network of professionals and the input from the different members will vary as the situation changes, making regular reviews and the role of a key worker important.

Changes in the family's needs

Flexibility may be needed to respond to changes in the family's ability to care for their child. With experience some families may be willing to take on new responsibilities [13]. Other families may find that they are unable to continue to provide the same level of care and require additional support. A few families will have more than one family member affected by the same condition [21]. Changes in family dynamics such as a new baby or a parent returning to work have a huge impact [21, 22]. Other situations such as illness, bereavement or divorce in the family will also affect the provision of care. These changes maybe transient and the family can resume their normal level of care with additional support over a period of time. However at times the new support offered to care for the child and family will need to be in place indefinitely, or increase further over time with continuing deterioration in the child's condition. This can be a particularly stressful time with parents and other carers experiencing feelings of failure and self-doubt [23].

Sudden changes in condition

Most children with life-limiting conditions experience some periods of stability and others of relatively rapid change in their condition. These may be associated with acute complications, for example chest infections in severe cerebral palsy, or with changes in the underlying disease process, for example a tumour recurrence. There will be a need for rapid assessment and treatment or rehabilitation, usually via hospital-based services. At such times the family and those involved in their care need particular emotional support as they are forced to face the reality of the underlying life-limiting condition again. They may also have to face the possibility that although this change in condition may be successfully treated with a return to stability, it may herald deterioration and a clear step towards the end of life [24, 25].

Adjustments in the child's and the family's needs will have to be incorporated in the plans for care and communicated widely to all the health care and other professionals (e.g. teachers) involved. For children who are at risk of a sudden death, for example severe cerebral palsy [26], or congenital cyanotic heart disease [27], anticipatory care will involve talking through this possibility with the family as well as those participating in the child's day to day care. The plan of care will need to identify appropriate actions to be taken in the event of sudden death or

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sudden life-threatening deterioration in the child's condition. This can help alleviate distress and blame at the time.

Over time, and perhaps with multiple events, each associated with deterioration in the child's condition the aims of treatment are likely to change. It may become clearer that aggressive treatments are now extending life of poor quality, or prolonging dying, and are not in the child's best interest [28]. The focus of care will move further towards an approach aimed at alleviating distressing symptoms and improving quality of life. Again preparation, anticipation and good interprofessional communication are needed so the family's choices are understood and planned for.

End-of-life (terminal) care

The end of life may follow long periods of treatment aimed at prolonging life, failure of curative treatment or may follow a sudden deterioration. It is often not until the 24 48 h prior to death [29] that it becomes absolutely clear that death is imminent. Professionals and families may be reluctant to acknowledge that the patient is dying [30] and consequently defer decisions and the need to anticipate symptoms and emotional needs, so that the most appropriate care may not be provided. Effective provision of end-of-life care poses specific challenges. Symptoms at the end of life can change very rapidly and be difficult to control. Often the family would often like their child to be cared for at home, and there is evidence to suggest that outcomes may be better if this is the case [6, 8, 31, 32]. However to achieve this there may also be an increase in the amount of professional input required.

Assessment of care needs

It is vital that the child and family are involved in decisions related to place and provision of care. Families need a balance so that they are empowered to work in partnership with professionals, taking control and ownership, whilst avoiding feeling pressurised into making decisions about services or issues which they do not wish to be burdened with or about which they have little knowledge [6]. Providing honest and comprehensive information regarding their child's condition and the services available is essential so they can make the most appropriate choices [33]. In addition to detailed discussion with the child and family a more comprehensive multidisciplinary assessment addressing symptom management, personal care including aids and equipment, psychosocial and educational needs will be required to contribute to the development of a detailed care plan [34].

It is important to emphasize that assessment of needs, and provision of care, are parallel and continuous processes. There is a need for careful monitoring and review in order to respond to the inevitable changes in the child's condition, both acute and gradual, and the family's ability to care. If changes in care needs are anticipated and planned for, unnecessary crises, such as emergency admission to hospital because of increasing physical dependency, may be reduced or avoided [35, 36].

Individual families are able to cope in different ways and will require very different levels of support [37]. They may have a clear idea of the type and amount of support they require [38]. However, families from ethnic minority groups may not request support and professionals may assume, incorrectly, that needs are being met within the community [39, 40]. The needs of the child's brothers and sisters are also important [41] but often not adequately considered [29, 42]. Even if the family's expectations or perception of the situation appear unrealistic [13], support that is not provided on the family's terms will not be accepted [43]. Through negotiation the family and professionals need to work towards a mutually acceptable and realistic plan. The family may need help to gain confidence in order to take on new tasks, but also to be able to accept support without feelings of guilt or failure [23].

It is important to discuss openly and ahead of time, the likely changes that will occur as the child's condition worsens and the changes in care needs that this may involve. But talking about possible problems, particularly those leading up to the child's death, is understandably distressing [44, 45]. Given appropriate opportunity most children and young adults are able to participate to some extent in decisions relating to their care, even at the end of life [46, 47]. However their ability to contribute will depend on the family's coping style and their developmental level. If the family's coping style makes it more difficult to ascertain the child's wishes, demonstrating the child's level of understanding by reflecting on the child's conversation and behaviour can make it easier to gain consent to explore these issues further [48].

What sort of care is needed?

Three dimensions of care have been identified as important for families caring for a child with complex healthcare needs in the community [37].

Information and communication

Both parents and professionals identify the need for open and honest communication. This may involve giving information on a wide range of topics including illness-management, care giving, services, benefits, and equipment [37]. A combination of personal guidance and good quality written information is required [49] both for its intrinsic usefulness and also because it empowers parents to participate in decisions [6]. Unfortunately

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in many cases parents have to actively seek information and at times the information that is provided is inappropriate, insufficient or even conflicting [37, 42, 50].

Teaching the parents to understand the child's condition and how to perform practical procedures is an important aspect of specialist nurses role [37]. The child and family need to understand how to adapt procedures learnt in hospital for the home environment; new procedures may be taught as their child's care needs change. Feedback to the parents or other carers on their skills and coping is important but must be offered in ways that do not leave them feeling pressurised or unfairly criticised when caring for the child [37].

Practical assistance

Professionals will often be involved in organising services and equipment both in preparation for hospital discharge and subsequently as the child and family's needs change. They may act as advocates for the child and family, campaigning on their behalf for services or benefits or acting as an intermediary liasing on their behalf with other professionals [37]. Co-ordination of care can be improved by designating a key worker for the family, from among the network of professionals involved [51]. However, even when professionals take on the role of co-ordination, parents continue to report they often still have to take on much of the co-ordination role themselves [37].

Families may benefit greatly from the opportunity to have a break from the many and often complex tasks that they undertake caring for their child. Short (respite) breaks from caring, and practical help around the home, can facilitate other normal activities like a night-out for the parents as well as allowing families to recuperate or cope with unexpected problems such as family illness [52].

Emotional support

Emotional support is also an essential part of care for children with life-limiting conditions and their families. Families describe the need to feel connected with healthcare professionals and that those healthcare professionals empathise with what is happening to them [5]. Parents describe the need for someone who is familiar with their child and easily accessible for advice and information [37]. Patients, their families and professionals all identify the need for professionals to have good listening and counselling skills [53] to enable children and their families to talk openly, share the burden of feelings and concerns and to help promote parents self-confidence [6, 37]. For some children and families more specialised psychological support is necessary. It will be important to ensure that this need is identified and the child and family are able to access the appropriate services.

The care setting

Care in the home

Most children with life-limiting conditions will spend much of their time at home and care at home has considerable advantages. It is almost always the place where families choose to be [6, 31, 32, 54, 55, 56,]. Families prefer home care often through the desire to avoid or decrease disruption to family life and normal routines such as school or work. Care at home is also beneficial for siblings [8, 57] as well as for increasing the sick child's quality of life. Opportunities to maintain open communication within the family are also greater when the family is at home.

Although care at home offers many benefits for the child and family, it also poses significant challenges. The family will inevitably take on significant responsibility for care. They may have no choice other than to take on these tasks if they are keen to take their child home, but they may also feel pressure from professionals and indirect peer pressure from other families who have already taken on such an extended role [37]. Indeed some parents report significant feelings of ambiguity and indifference particularly with regard to taking on the care of a technology-dependent child at home [58].

As well as their usual parental role, they are likely to be taking on basic nursing tasks including lifting, assistance with washing and dressing, administration of medication [17], and perhaps more complex tasks such as assisted feeding, suction and emergency management of seizures or other acute complications. Families and carers of technology dependent children may take on or assist with care of a highly technical nature, for example changing a tracheostomy tube, which in the past would have been the domain of the professional [13]. Professionals need to encourage parents to attain skills to care for their child and avoid making it seem overwhelming [6]. In some circumstances it may be very difficult for the child, particularly for the technology-dependent child, to get home even though he or she no longer wants or needs to be in hospital. Several barriers that delay the family taking their child home have been identified: attitudes of healthcare professionals, organising responsibility for financing home care, poor management within the health service and collaboration with other agencies, complex social issues, housing problems, and lack of auditing and outcome measures [59].

Caring for a child at home is a 24-h responsibility and may mean months or even years of interrupted sleep with no prospect of a break [17]. There is the additional responsibility of taking on complex tasks knowing that the consequences of a mistake may directly impact on their child's health [13]. Some families may find themselves isolated from family and friends who find the situation distressing and feel powerless or

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unwilling to help. At times families may also become isolated from professionals. There is a particular risk of this when the child's condition is relatively stable, even if their needs are significant, and professional resources are limited so that children or families with new diagnoses or changing needs are prioritised [50, 60]. If care for the child with a life-limiting condition is to be sustained over periods of months to years, the family must remain resilient and able to adapt to changing needs over time. Sharing some of the care and appropriate multidisciplinary support, enabling the child to attend school, short break respite care and occasional holidays can all facilitate the majority of care being provided by the family, in the home environment.

Carers from within the family

Involving members of the family other than the parents in the care of a child with a life-limiting condition is likely to be beneficial for the child, their parents and the family as a whole. The degree to which grandparents become involved with the care of a child with developmental disability and their satisfaction relates both to their attitude towards children with disabilities in general, and their relationship with their children. Involvement with a grandchild with developmental disability appears to strengthen family relationships [61]. Involvement of siblings in the care of their brother or sister has both positive and negative aspects. It can bring closeness, feelings of recognition and appreciation, and may also help long term adjustment [57]. However there may also be feelings of guilt, anger and resentment when the parents have less time for their other children and caring interferes with normal childhood activity [41]. A lack of support for siblings and opportunity to share some of the important issues they face has been recognised [50].

Studies of informal carers (family, friends) of adults have identified high unmet needs. These include the need for information, the opportunity to share experiences, and to be recognised for the care that they are providing. These needs can be met by multi-professional teaching and peer support [62, 63, 64].

Trained lay carers

Many families rely on teams of trained lay carers to assist them in caring for their child at home. These carers help with activities such as washing and dressing and are trained to carry out specific nursing tasks, for example administration of medication via gastrostomy. The use of trained lay carers has undoubtedly facilitated many children who would otherwise have remained in hospital being discharged home and attending school. But lack of co-ordination and access to skilled competent carers is a particular problem for some families [50]. The high turnover of carers is a reflection of the significant psychosocial stresses of this role and is a concern for families who have to rely on an inconsistent, frequently changing service [65].

In the United Kingdom parents cannot be paid to carry out care for their own child, although they maybe eligible to receive supplementary benefits. Parents may have to return to work in order to support the family, whilst lay carers are paid to care for their child [66]. Trained lay carers, employed by the local authorities, often work to support a child and their family but the family is not their employer. There may be conflict between the view of the employing authority and the family regarding the role of the carer and the tasks that are appropriate for them to undertake. It can be difficult to work in someone else's home over an extended period whilst maintaining appropriate boundaries. Carers cannot easily escape conflict between family members or they may be inadvertently drawn into an inappropriate counselling role. They risk becoming intensely involved with the child and family and becoming overwhelmed by the situation so that they are unable to cope [65, 67]. The impact of these stresses on the trained lay carer, child and family, can be reduced with provision of appropriate clinical supervision [68].

Trained nursing care

Trained nursing staff are frequently the pivotal professionals involved in supporting children with a life-limiting condition and their family at home, often taking on the role of the key-worker. However their availability and role varies considerably depending on the child's diagnosis, location and availability of local resources. Just as professionals assess and make judgements on the child's condition, needs and role of carers, so will parents also assess and judge the level of expertise and knowledge professionals possess [37]. They may preferentially seek advice from those they consider most capable of providing the support they require.

Paediatric outreach nurse specialists are highly trained nurses usually based in a hospital, often as part of a multidisciplinary team caring for a specific diagnosis, for example malignancy or cystic fibrosis, or in a children's hospice. Paediatric oncology outreach nurses have been particularly important in the development of paediatric palliative care as a speciality, and critical in allowing increasing numbers of children with progressive malignancy to die at home [54, 69]. As death in childhood is rare, few family doctors, community based children's nurses or adult palliative care nurses will have significant experience of end-of-life care in children. Rather than taking over the care in the home the outreach nurse specialist aims to work in partnership with the family and local health care workers, empowering them to care for the child and facilitating communication between the child and family, primary care team and specialist centre [70]. They provide a combination of

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informal teaching, expertise in symptom management and psychosocial care, practical advice and support and possibly short periods of respite in the home. They may also take on the role of key-worker and be part of a 24 h on call service to facilitate optimum end-of-life care [71, 72].

In contrast to the hospital-based nurse specialists, in the UK many areas have community based children's nurses and more recently some of these teams have developed into multi-disciplinary palliative care teams, for example the Diana nursing teams [73, 74]. These teams are able to offer much greater co-ordination of care and frequent input at a local level, but are less able to provide disease-specific guidance or advice and support for complex end-of-life care. The most effective care for the child and family can be achieved when these local teams are able to work in partnership with more distantly based specialists with expertise in the child's illness and palliative care.

Although the services provided by children's community nurses are sometimes seen as preferable, there are circumstances where involving other community nursing teams maybe necessary or desirable. In the United Kingdom there are teams of district nurses, usually based at the family doctor's surgery or health centre. These nurses provide a range of services to all patients in the community and this will include children if no specific children's community nursing team is available. Although their experience with children with life-limiting conditions may be limited, their skills and local knowledge with regard to obtaining specialist supplies or equipment can prove invaluable. They may also have considerable experience with providing end-of-life care at home. In this situation additional support and guidance may be required in order to overcome the inherent anxieties of caring for children. However after an initial training period, teams of district nurses will often be able to take on tasks such as daily visits to change a syringe driver and work alongside children's community or outreach nurses in order to facilitate 24 h access to care.

In situations where specialist paediatric palliative care advice is not available, particularly for pain and symptom management at the end of life, it is important that an alternative support of appropriate expertise is identified. Many areas in the United Kingdom have access to community based adult palliative care nurse specialists (Macmillan Nurses). These nurses provide specific expertise in symptom management, psychosocial support and end-of-life care for patients with cancer and work in a predominantly advisory capacity alongside the family doctor and district nursing teams. Although their experience with children may be limited, the principles of symptom management at the end of life are similar to those in adults and the advice they are able to provide for professionals caring for children, particularly at the end of life at home, can be very helpful.

Doctors

Access to medical advice and support is also essential for the care of the child with a life-limiting condition. Again the provision of such medical support is likely to differ depending on the available expertise, the diagnosis and the needs of the child and family.

All children with life-limiting conditions are likely to be under the care of one or more hospital paediatricians. These may be doctors with specific expertise in the child's condition such as a paediatric oncologist or paediatric neurologist or general paediatricians. These doctors may work closely, particularly with the paediatric outreach nurse specialists to facilitate provision of palliative care to children in the community. In the United Kingdom, the traditional model has been for these doctors to remain hospital-based but some of these specialists have extended their role and are able to visit their patients at home, particularly those with palliative care needs. However clinical workload and other hospital commitments may mean that this service is limited to planned home visits and may not be flexible enough for situations when the child's condition is changing rapidly, for example at the end of life. In many areas of the United Kingdom there are also those who are particularly successfully involved as part of a multidisciplinary team addressing the needs of children with complex chronic conditions [79, 80]. However this approach is generally built on a well child model and although undoubtedly very effective in the periods of stability may not be flexible and responsive enough to deal with acute changes in the child's condition such as for end of life care. Both hospital- and community-based paediatricians will need to work closely with the child's community nursing team and family to ensure the best standards of care.

Some children and families retain very close ties with their family practitioner throughout their illness journey. However for others, such as those with cancer, whose care following diagnosis has been lead by hospital based services, the family doctor may have been less involved. The involvement of the child's family doctor is likely to be essential in the provision of good end-of-life care at home [75], visiting the child at home to help provide assistance with symptom management and to support the family. If the family doctor has previously had relatively little involvement in the child's medical care it can lead to tension between him or her and the family [76]. Because of the rarity of the situation family doctors rarely have significant expertise in the care of children dying at home, and will need to work with other professionals such as children's community nurses or outreach nurse specialists for guidance. Sometimes

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this can also be a source of conflict [77, 78] and the family physician may welcome the opportunity to discuss the child's condition and its management with a paediatrician, or paediatric palliative care physician.

At the time of writing there are only a very few paediatric palliative care specialists worldwide. These are paediatricians, often with a general paediatric and paediatric oncology background, who have undergone specific additional training in paediatric palliative care. They offer a tertiary service to children with palliative care needs in hospital, but also in hospice and at home. The small number of paediatric palliative care specialists and the large populations that they serve means that, in addition to offering direct care to their own patients, they must also be available to offer a wider advisory and supportive role to other paediatricians and community teams, as the speciality develops.

The number of other doctors with significant expertise in palliative care for children is increasing. Most paediatric oncologists will have some experience of palliative care for children with cancer and a proportion have considerable expertise in this area. Some general paediatricians are developing an interest in paediatric palliative care and have undertaken additional training in the field and are well placed to support local and community teams. In the United Kingdom many of the children's hospice family doctors have increasing expertise particularly in symptom management and end of life care and again a proportion of them have undertaken additional training in palliative care. Although the work of children's hospice doctors has usually focussed on the needs of inpatients, their increasing expertise, and the rising number of children's hospice outreach teams, certainly in the United Kingdom, suggest that some of these family physicians may also begin to offer their expertise more widely.

Finally adult palliative care physicians who are predominantly based in hospice or hospital may be able to provide advice and support to their paediatric colleagues particularly for symptom management [71, 72] and this approach has been particularly evident in where specialised paediatric palliative care is sparse.

Other professions allied to medicine

A number of other professionals are likely to be involved with the child with a life-limiting condition and their family along their journey from diagnosis through to bereavement. As with the key professions already discussed there will be a great variation depending on the child's diagnosis, care needs, care setting, and available expertise.

Social workers may be involved in direct support of the child and family including at the time of diagnosis, during acute crises, at the end of life and during bereavement. Social workers are most often involved in traditional social work activities such as providing knowledge of community resources and provision of psychosocial support. They may be involved with assessment for grants for adaptations, or continuing care. The role may include facilitating team work and providing psychosocial support for professionals, as well as the child and family [81, 82]. Social work involvement as part of the multidisciplinary team can be particularly important when difficult ethical decisions are being discussed. This may include encouraging self-determination, challenging discrimination, being non-judgemental and promoting open discussion. Unfortunately children with complex chronic conditions and high levels of disability are also at increased risk of non-accidental injury and neglect. The social worker may then also have to be involved in child protection work. As with other professions, social worker's experience of palliative care, particularly of end-of-life care, may be limited [83].

Psychologists are a relatively scarce resource and although recognition of psychological needs is an integral part of the philosophy of palliative care, the majority of patients and their families do not need to be under the direct care of a clinical psychologist [84]. Most patients and their families will receive effective informal psychological support from those professionals directly involved in their care such as nurses or social workers. However ideally these professionals will have access to a trained clinical psychologist for supervision, and with whom patients and families can be discussed and if necessary be referred if particular needs are identified, for example particularly challenging cases such as complex collusion, denial or complicated bereavement. Psychologists also have specialised skills in therapy and the use of drawing or play to facilitate communication. In the UK a tiered model has been proposed [85] with patients and families being referred to professionals with increasing levels of expertise in psychological care.

Physiotherapists, occupational therapists, and speech therapists may all be involved in the care of children with palliative care needs. Rehabilitation interventions are often overlooked and underutilised despite high levels of functional disability in adult patients with palliative care diagnoses [86, 87, 88]. However for children, particularly those with neurodisability, the benefits of physiotherapy, speech therapy and occupation therapy are well recognised for facilitating as normal patterns of development as possible. Often these therapies are delivered as part of a community based programme, via school or nursery or sometimes in the patient's own home. Integral to this approach is working with the child's family in order to teach techniques that can be continued in between therapy sessions. It is important to recognise that in addition to promoting age appropriate developmental patterns the use of techniques such as appropriate positioning, stretching exercises, and the

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use of aids and adaptations can assist with symptom management. Providing more intensive levels of therapy, such as chest physiotherapy in the community for the end of life [89], or community rehabilitation for a head injured child may prove more difficult if resources are stretched. If care at home is the desired option, it will be particularly important to work with family to teach them appropriate techniques to continue when the therapist is not available.

The role of the pharmacist as a member of the multidisciplinary team in adult in-patient palliative care units is well recognised [90]. There is also an increasing recognition of the role of liaison pharmacy in the promoting safe medicines management and effective symptom control for those receiving palliative care in the community [91]. This role may include advice to rationalise inappropriate prescribing regimes, warnings regarding potential drug interactions and advice about therapeutic drug monitoring [92]. Communicating directly with the community dispensing pharmacist gives them confidence if they are not be familiar with drugs and doses used in paediatric palliative care and includes them in the team caring for the family so they can facilitate access to the necessary medications. The importance of safe management of controlled drugs in the community has been highlighted in the United Kingdom following the publication of the report into the case of Dr Harold Shipman [93], with one doctor taking clear lead in prescribing controlled drugs for use in the community and all prescriptions being dispensed at the same pharmacy practice.

Voluntary organizations

In addition to services offered by statutory provider children and their families may be able to access care provided by voluntary, or independent organisations. The services provided are outside those provided by the state medical care system and are usually offered free to the child and family. Such services maybe funded entirely by voluntary donations (charitable organisations) or statutory bodies, such as the state-run health service or social services departments, may contract them to provide services on their behalf. The range of services that can be provided in this way varies immensely and ranges from befriending, help with domestic chores, care for the child or siblings, play-groups and specialist play facilities to bereavement support and counselling. Although these services are often regulated to a certain extent by statutory legislation, their provision is essentially driven by local initiatives and such services may be developed or disappear over a short time scale. This may make it more difficult to establish effective communication with other members of the multidisciplinary team. There is often no substitute for local knowledge to ensure that families are able to access voluntary services, from which they might benefit. Development of local directories of services including voluntary organizations has been advocated as an example of best practice in order to improve access to these and other services [94].

The multidisciplinary paediatric palliative care team

From the preceding discussion it is clear that a vast number of different professionals may be involved in the care of a child with a life-limiting illness, regardless of the care setting. It is important to emphasise that provision of paediatric palliative care is essentially a multidisciplinary approach. The multidisciplinary team caring for an individual child and family needs to be tailored to their individual needs and may change as the child's condition changes and as the child moves into different care settings. Clearly this creates significant challenges for communication, co-ordination and continuity of care (seeChapter 6, Teamwork). At the centre of the team there are likely to be one or more nurses and this is the profession that most often takes on the role of key worker. There are also likely to be one or more doctors and variable provision of support from other professionals. What is important is that the professionals directly involved in the care of the child and family are able to adequately assess the child and family's needs, are aware of their own limitations, and are able to access appropriate advice and support from other professionals where need is identified.

Short break (respite) care at home

Caring for a child with a life-limiting condition can be incredibly demanding both physically and psychologically. Provision of short-break (respite) care can provide an essential break from these demands and ensure resilience so that the family can continue to care for their child. Short break care at home is sometimes seen as the model of choice, as it reduces disruption to the child and their normal routine [23]. Most often this is provided by a team of trained lay carers and children's community nurses. However it may be more difficult to provide short break care in this setting, other than for a few hours at a time, due to resource implications. Furthermore for some children and families, provision of short break care away from home, particularly in a children's hospice (see below), has significant advantages.

School

School is an important part of everyday life providing the opportunity for learning, independence from parents and social interaction [95, 96]. Attendance at school provides a natural break from caring for the family. This can be vital in maintaining a family's resilience when caring for a child with complex needs [60]. Although there may be interruptions for acute crises or treatment, most children with a life-limiting condition will be able to attend school during periods when

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their condition is relatively stable [15, 97]. Practical difficulties should not prevent access to school but may require careful planning to ensure that the child is able to participate in school as fully as possible. Parents or other family members should not be the primary source of support in the classroom if the child is to develop independence.

Many children require regular medication during the day as well as treatment for pain or seizures when required. It is not always easy to arrange for school staff to administer medication [60] but careful planning ahead both for routine and emergency care is essential to avoid the parents having to be available to do this [18]. It is important to consider the level of intervention that would be appropriate in the case of a sudden deterioration in the child's condition, such as cardio-respiratory arrest, taking into account the child's prognosis, life expectancy and the wishes of the child and family [18]. Staff can be provided with information about the child's illness and may value contacts with education staff at the hospital and nurse specialists. Families may also appreciate visits from the nurse specialists to the school to educate and support staff and help them in communicating with the other children in the school.

Holidays

When family holidays are planned it is important to anticipate possible changes in the child's condition and also consider adequate holiday insurance [98]. The family will need a covering letter explaining their condition, plans for treatment in an emergency, drugs used, and contact details. Holidays are frequently offered to children and families, particularly toward the end of life and by charities. Although these are greatly appreciated and can be extremely beneficial they may be unrealistic if offered at too late a stage. Participation in school trips may be treated with enthusiasm by children with life-limiting illness, but sometimes less so by their parents [15]. Later, however, such trips are often recognised as being one of the most important events in the child's life.

End-of-life care at home

The majority (78%) of children in the United Kingdom with progressive malignancy will die at home (UKCCSG figures). There are no published figures for numbers of home deaths for children with other life-limiting conditions but data from the UK Association of Children's Hospices suggest that around 36% of hospice users die at home [99].

There is considerable evidence to suggest that families of children who die at home have less difficulty in adjusting and cope better in the medium to long term [8, 31, 32] but studies in adults have shown home death to be more stressful for families of the deceased [100]. A more recent study [101] in children failed to show any significant difference in short term outcome between parents of children with malignancy dying an acute hospital death and those dying a palliative death, predominantly at home. However a greater proportion of the siblings of the child dying an acute death reported problems compared to those of children who died a palliative death.

End-of-life care at home allows the child and family greater control over their environment with involvement of fewer professionals and increased opportunities for privacy and time together. The family has a clearly defined role in providing the majority of the child's care. It is much easier to include the siblings and to discuss difficult issues [6, 57].

If the intention is for the child to be cared for at home during periods of rapid change in the child's condition, including at the end of life, then anticipatory planning is essential. The family, and the involved professionals, will need to be aware of what may be required, and what is available [102, 103]. Part of anticipatory planning includes provision of specialist equipment, for example a pressure-relieving mattress, and assistance for physical tasks, for example, lifting and turning also ensuring that appropriate medication for symptom control is available and written up in advance [104]. End-of-life care at home is likely to be difficult, if not impossible, without adequate support but if this is available it is not usually necessary to move a child [103, 105]. Such support should include [75] 24 h access to expertise in paediatric and family care, 24 h access to expertise in paediatric palliative care, a key worker to coordinate family and respite care and immediate access to hospital if needed.

Although many families choose home as the place of choice for caring for their child it is important not to underestimate the physical and emotional burden of end-of-life care at home and not to assume that home care is the only choice. Those families that choose death at home are more likely to be self reliant, confident and able to confront problems, all factors that have been shown to be associated with better coping and a better long term outcome [8, 106]. However if a family feels isolated and unable to cope at home, the ensuing breakdown of care can result in feelings of guilt and failure [23, 107]. Occasionally, difficulties with symptom-control, psychological distress or family wishes mean that the child is transferred to paediatric hospice or hospital [108]. This should not be seen as a failure but as a choice ensuring the best care for the child and family [109, 110] and good palliative care can still be achieved.

Care in hospital and intensive care

Much can be done to bring the home from home environment to the child and family in hospital. This may include attention to privacy, involvement in care and decision making [111],

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stopping intrusive and inappropriate monitoring and keeping the family together, for example by the provision of family accommodation [112, 113]. However it is often difficult for siblings to spend much time with their brother or sister in hospital. A system of sharing care where the specialist paediatric hospital works together with a local hospital can enable the child to be transferred and the families to be closer to home [114].

For families of children with prolonged illnesses and complex care needs, admission to hospital can cause particular difficulties. Admission to hospital inevitably involves interaction with a greater number of healthcare professionals than in the community, many of whom may not be familiar with the child and their family. Subtle differences in treatment approach or explanation can result in confusion and lack of trust [42]. Nursing staff may expect parents to both continue day to day to care for their child [13] but at the same time relinquish their control to professionals. Parents report feeling their experience and knowledge is disregarded and their competency questioned [37, 115]. These differing, and possibly conflicting, expectations [116] require negotiation of roles between parents and professionals to reflect the differing power balance in the hospital versus home [13].

Short breaks in hospital

Although the acute hospital ward is not generally considered to be a desirable place for short-break care, for some families there are no realistic alternatives. Short breaks in hospital provide reassurance of highly trained staff and a secure environment. A number of purpose-built respite units linked to paediatric units in the United Kingdom have been developed which offer a high standard of home-from-home care with the advantages of close links with the hospital [60].

End-of-life care in hospital

The majority of childhood deaths in the United Kingdom and the United States occur in hospital compared with home or hospice. Of these hospital deaths, around 60% are deaths due to life-limiting (complex chronic) conditions and their complications [117, 29]. The majority of childhood deaths from progressive malignancy occur at home, but 40% of children that die of cancer do so following complications of treatment that is intended to be curative [118] and these deaths occur primarily in hospital. Children with complex chronic conditions are more likely to have prolonged hospitalisation and prolonged ventilation prior to their death, when compared to deaths from acute causes [119]. This aggressive treatment of acute episodes in children with ultimately terminal conditions reflects the difficulty in determining short-term prognosis [109] and also the difficulty both for families and professionals in defining the time when the best interest of the child is to move away from aggressive interventions and focus on symptom management and palliative care.

When it is recognized that the end of life is immanent in hospital, the option of taking the child home for care, particularly if this is something that the child and family would prefer, can help acceptance of the situation [8, 120]. The possibility of doing this is not always thought of or offered as proactively as it could be. Some units have pioneered examples of innovative approaches where neonates and children have been taken home from the intensive care unit (ICU) or to a children's hospice and extubated there, to fulfil the family's wishes. Even if it is not possible for the child to die at home the family may be able to take their child home or to a children's hospice after death [121].

The majority of children who die in hospital do so on the paediatric ICU [29, 108, 119]. Death in these cases is frequently associated with either a do not attempt resuscitation order or withdrawing mechanical ventilation. It is possible to provide effective end-of-life care in the hospital ward or ICU [104]. However evidence suggests that the standard of end-of-life care for children in hospital is still often poor. Aggressive curative treatments may be continued without evidence of benefit and at the expense of recognition of palliative care needs. Families may find it difficult to acknowledge that their child is dying [45], with subsequent long-term difficulties and complicated grief. Families of children dying in hospital [42] continue to identify confusing, inadequate or uncaring communication, oversights in procedures and policies and failure to include siblings. Parents felt that they had little or no control during their child's final days or that they would have liked to make decisions differently [122].

A number of studies have shown that families of children with cancer who die in hospital experience greater guilt [2], anxiety, depression, and interpersonal problems [8] than those of children who die at home. If death does not occur at home, the outcome appears to be better if the family can acknowledge the situation and prognosis, for example by discussing options for hospice care [45].

Children's hospices

Hospice has been described as a philosophy of care rather than a facility [123]. The term is used routinely in this way for all palliative care in the United States and some other projects [124, 125] In the United Kingdom the word hospice is more often used to refer to a specialist in-patient facility.

The United Kingdom children's hospice movement began in the 1980s in Oxford [124] with the aim of supporting families who were taking care of their sick child at home most

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of the time. Inpatient children's hospices are small home from home' environments generally providing 8 10 beds with opportunity for the family to stay either in the child's room or in separate family accommodation. Many hospices have excellent recreational and therapeutic facilities that can be accessed by the child and family together including gardens, play facilities, hydrotherapy pools and large living/dining rooms where children, families and staff can socialise and eat together.

Children's hospices have a specialist role for short-break care and for end-of-life care if dying at home is not an option [52]. They maintain links with available community services, provide telephone contact for families and some have out-reach and home care services. At the end of life they provide care at the hospice, if that is the family's choice. Families can also use their bereavement suite (with in-built cooling unit) where a child can stay once they have died. The hospice team will continue to provide support following the child's death [110]. The hospice team maintain a strong recognition of psychosocial needs with informal counselling services and often support groups for children and their families. Services aim to be child and family centred and delivered in partnership according to the families wishes [123].

Since the development of the first children's hospice numerous other children's hospices have been established in the United Kingdom and elsewhere [60]. The first children's hospices were nurse-led with support from local family doctors. Most children's hospices in the United Kingdom continue to be nurse-led, but there is increasing involvement of both hospital and community paediatricians [70] as well as an increasing level of specialist skill from the family doctor's involved. The hospices usually have a multidisciplinary team (e.g. physiotherapists, family support workers, play-specialists, teachers, social workers, chaplains) who work closely with their counterparts in hospital and community [127].

Paediatric hospice is not an option chosen by all patients with life-limiting conditions and their families. Unlike adult hospices, relatively few children with cancer will use a paediatric hospice [109]. Instead children that use paediatric hospice more often have slowly progressive irreversible life-limiting conditions such as Duchenne muscular dystrophy, mucopolysaccaridoses and severe static or progressive neurological diseases [70].

Short break (respite) care

The majority of beds in children's hospices are used for short break respite care, in order to give the family a break from routine and stress of caring [23]. The value of this service is demonstrable by the heavy use particularly at weekends and holidays, and the observation that demand has resulted in many children's hospices having to reduce the number of nights they are able to allocate to each family. In addition many hospices offer emergency short-break care at times of crisis such as when a parent is ill or a sibling goes into hospital. This flexibility is particularly important in preventing family breakdown or unnecessary admission to hospital. As qualified nurses staff the children's hospice, short breaks and supportive care can also be offered when the child is unwell, but hospital treatment is not appropriate.

Short breaks can be provided for the child alone, or for the child with family or friends. They provide an opportunity for the family to spend time with the child away from everyday chores and the responsibility of their regular nursing tasks. For young adults short breaks provide valuable independence from family carers and an opportunity to spend time with friends and other young people with similar problems. Short breaks may also allow the family valuable time to do things that simply would not otherwise be possible, knowing that their child is being cared for in safe hands , such as a holiday abroad or time to spend with siblings.

Hospice outreach (hospice-to-home) services

A number of paediatric hospices offer a hospice outreach service usually backed up via 24-h telephone advice line. Specialist hospice nurses and other professionals visit the child and family at home. They may also support families during outpatient appointments at the hospital, or visit them when they are admitted to hospital. Although some of these teams offer a short-break service more often the support is aimed at symptom management, psychosocial support, and practical advice in order to enable the family to continue to care for their child effectively [52]. The hospice outreach service needs to work alongside the other health care professionals involved with the family.

Psychosocial support for the child and family

Psychosocial support will be provided as a matter of course by the hospice team during short-break and end-of-life care. In addition informal, one to one counselling services are often available from a family support worker, social worker or counsellor. The opportunity to meet and share experiences with others using the hospice offer the children and their families invaluable support. In recognition of the value of this peer support a number of hospices offer specialist support groups, not just for bereaved parents, but for other family members at any time from diagnosis to bereavement [60]. Hospices can be particularly responsive to the needs of siblings [41].

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End-of-life care in hospice

Currently only 20% of children that use a hospice in the United Kingdom will die there [99]. The majority die either at home or in hospital, which partly reflects the difficulty in predicting outcome from acute episodes for many of these children. For those children previously known to the hospice, there is often a period of escalating symptoms and increasingly frequent admissions for short-breaks as their care needs increase. The admission for end-of-life care is the natural sequel to recognition of this irreversible deterioration in the child's condition if it is the family's choice. Sometimes children are admitted to the hospice specifically for end-of-life care for example from hospital. The hospice can offer a much more homely environment with excellent support for a family who prefer not to be at home. The hospice can also be helpful for end-of-life care in families where the parents are estranged, allowing more space for the different parties and a more neutral environment.

Bereavement support

When a child dies within the hospice, the family will be encouraged and supported in spending time with their child and washing and dressing them after death. The bereavement suite (decorated as a bedroom but with inbuilt cooling) is particularly valued by families allowing them to have time with their child, coming and going as they please, until the child's funeral. Families of children who have died in the hospice may wish to continue to stay until their child has left. Furthermore families of children who have died elsewhere, whether they were known to the hospice prior to their death or not, have also used and valued this service [99]. Bereavement support can include helping families planning their child's funeral and then continues with regular follow up and memorial services.

Symptom management

Unlike adult hospices [127], symptom management does not currently constitute a major part of the work of children's hospices. Much of the care provided in children's hospices is in the form of short-breaks and if the children's condition is reasonably stable there is no indication to change management. Most children using a children's hospice will be under the care of one or more paediatricians in hospital and the community who are involved in management of problems such as epilepsy and spasticity. When children receive end-of-life care in hospice symptom management assumes a greater role and a number of hospice family doctors, as well as nursing staff, are now gaining expertise in this area [128]. The increase in numbers of specialists in paediatric palliative care, both paediatricians and hospice family doctors, suggests that symptom management is likely to become more important part of the children's hospice role in the future.

Advantages and disadvantages of children's hospice care

There is no doubt that children's hospice provides an exemplary standard of short-break and end-of-life care for the child and family. In contrast to short-break care provided by other agencies such as social services, care can be provided even when the child is unwell and has significant medical problems but when hospital admission is not appropriate. Although children's hospices endeavour to maintain a home from home' they are not the child's home and cannot fully compensate for familiar surroundings and daily routine. Parents may feel a sense of guilt when having to share care with others. Care team members, due to the very nature of their role, can become very involved with the child and family. They too require support to retain appropriate boundaries and continue to empower parents to take the leading role in the care of their child and be involved decision-making. Children's hospice can not provide an acute medical service and at times it will clearly not be appropriate to admit a child to hospice.

All the children's hospices in the United Kingdom are independent and run with charitable donations. They run alongside the relatively under-resourced services provided by the National Health Service. Tensions can arise from this relating to competition for local charitable donations and for staff. Both the hospices and the statutory services need to devote effort to maintaining regular communication over mutual patients and to recognise and acknowledge each others'role in care.

Summary

The primary objective of palliative care is to support the child with life-limiting illness and their family, from the point of diagnosis: enhancing quality of life, maintaining resilience and coping, particularly at times of crisis and at the end of life, and allowing the child and family to achieve as normal a life as possible. Home is where most children and families choose to be and in particular there is evidence that families who provide end-of-life care for their child at home cope better. In order to care for their child at home the family will need help and support from a number of professionals. The optimum configuration for the provision of care will depend on the care setting, the needs of the child and family and the structure and extent of the health care system. However the fundamental role of palliative care remains the same. This will include advice, information, symptom management, emotional and practical support and often short breaks from caring. Successful

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care will be flexible enough to anticipate and cope with changes in the child and family's needs, communicating effectively and moving seamlessly between home, hospice, hospital or school, wherever the child may be.

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Oxford Textbook of Palliative Care for Children
Oxford Textbook of Palliative Care for Children (Liben, Oxford Textbook of Palliative Care for Children)
ISBN: 0198526539
EAN: 2147483647
Year: 2004
Pages: 47

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