Caring for Child and Family with terminal Illness

The aim of this assignment is to critically explore the concept of paediatric palliative care and the relevance of a children’s hospice in Ireland. A critical analysis of literature surrounding this topic will be undertaken in order to gain an in-depth understanding. Key elements relating to paediatric palliative care will be highlighted. Finally, the author will conclude on appropriateness of a hospice for sick children.

An initial need for palliative care for children was acknowledged in the 1980’s; having identified the need for this service, a nun opened and successfully ran a hospice for sick children (Rowse 2008). Interestingly, thirty years on, there is much debate surrounding the advantages and disadvantages of a national children’s hospice in Ireland. However, contrary to beliefs and the success of many hospices, it is recognised by the Department of Health and Children (DOHC) (2001); Rowse (2008); Watson et al (2009); Bishop et al (2008); that children with a life-limiting illness are best cared for at home. In addition, Watson et al (2009) outlined that when the premature death of a child was evident, the option of home, hospice or hospital as a place of death was presented to a child and their family, the majority of children and their families chose home. Caring for a child with a life-limiting illness can be a stressful and exhausting experience; it can put enormous pressures on the family unit (Wolff 2008).

From personal experience, a family’s dynamics can be seen to change over a period of time when a child is born or diagnosed with a life-limiting illness. Individual family members appear to take up a specific role when faced with a diagnosis of a life-limiting illness. A life limited-illness can be viewed as a condition that has no cure at present and will inevitably lead to the premature death a child (International Children’s Palliative Care Network (ICPCN) 2008; DOHC 2005). However, in many cases of paediatric palliative care it is very difficult to place a time frame on the length of the illness and its trajectory. Watson et al (2009) illustrated that these factors depend greatly on the individual child’s diagnosis and the rarity of the illnesses being experienced.

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The DOHC (2010) identified conditions and diseases that children most commonly suffer with and divided them into 4 individual groups according to their types. However, experience and further reading has demonstrate that, in reality these illnesses don’t always stand alone and can be combined with another illness or condition; as a result they may not always fit into a specific group type. Therefore, needs change and vary depending on the individual. While et al (1996) identified that an alarming 60% of children suffering with a life-limiting illness were dying from non cancer related conditions. It would appear difficult to clearly ascertain how long individual paediatric palliative care provisions would needed for, as many of the paediatric cases are unique in there diagnoses and have vast amounts of unknown variables.

Similarly, these problems can be mirrored within the adult population of individuals with an intellectual disability, many individuals within this group are living with complex mental/physical illnesses throughout their lives, a further diagnosis of a life-limiting illness and its illness trajectory is surrounded by even more uncertainty (Gary and Stein 2008). Unfortunately, individuals with an intellectual disability are viewed as being one of the most disadvantage groups in society (Ryan & McQuillan 2005). It would appear that a comparison could be drawn to a child’s position regarding their needs, Watson et al (2009) highlighted that when a child is at an advanced stage within the illness trajectory many problems can occur, however, children unlike adults tend to live many years longer; many parents find this extremely difficult. From the authors experience many individuals with a primary diagnosis of severe intellectual disabilities and a life-limiting illness, appear to live longer than that envisaged by the doctor. Although it has been acknowledged by the DOHC (2005), that within the trajectory of a child illness, children can cross over in their requirements for care needs throughout their illness due to the individuality of cases. The same has not been recognised within individuals with an intellectual disability.

It can be argued that there are similarities between the philosophies of adult and paediatric palliative care. Gaining recognition of these differences has proven difficult to achieve (Richie 2008). In addition to this, Malcom et al (2008) acknowledged that children and adult palliative care principles were comparable, although, the uniqueness and specialist field of paediatric palliative care continues to emerge on its merits. McCulloch et al (2008) identified that paediatric palliative care principles are largely based on adaptation of the adult principles. However, Watson et al (2009) recognised some variations of these were developmental factors, approaches to consultation, physiology/pharmacokinetics, family structure and function, school and finally illness trajectory. Unfortunately, Dangel (2002) acknowledged that in the past some groups of children within Europe, where paediatric palliative care was not recognised or offered as part of multidisciplinary team involvement, a predisposing factor for the more recent tapered number of children receiving the provisions and benefits of a palliative care input. Furthermore, The European Association of Palliative Care (2009) advocated that a child should not be compared to that of a small adult, it was reiterated that their individual needs differed to that of an adult, although adult palliative care knowledge and experience can be a valuable and enriched source of expertise.

The World Health Organisation (WHO) (2002a) illustrated that adult palliative care aims to improve quality of life for patients and their families with problems associated with life-threatening illness, this can be achieved through the prevention, relief, early identification, holistic assessment and treatment of pain, encompassing all factors associated with physical, psychosocial and spiritual needs. Moreover, the paediatric definition applied by the WHO (1998a) bears a very close resemblance to that of the adult definition, however, central to the paediatric definition is active total care of the child’s body, mind and spirit, giving support to the family from the start of diagnose and will continue regardless of whether or not a child receives treatment directed at the disease, this should be a broad multidisciplinary approach availing of community resources provided tertiary care including that of the home. Furthermore, a Report of the National Advisory Committee on Palliative Care (2001) stated that, if a child requires a palliative care service due to their life-limiting illness, their individual needs must be addresses and differ from that of adults. As a direct result of the recommendations published within this report, the DOHC (2005) devised a document on the assessment needs of a child needing palliative care.

Murphy (2009) cited by Hawley (2010) outlined that the collaboration and interagency workings of professionals and families is key to “unlocking the puzzle” and viewing the holistic needs of a child and family. Interestingly, Hawley (2010); Gary and Stein (2008); McKechnie (2006) reported that as professionals we only see the needs of individuals based on the experiences and components that our own disciplines allow us to see. The needs of a child are identified by the DoHC (2010), where they foresee the future provision of paediatric palliative care in Ireland. Within this insight there is much change and some encouraging prospects for the field of paediatric palliative care. The main areas within both medical and nursing care that are being addressed are specialist paediatric positions, education and training, co-operation and collaboration between paediatric and palliative care services (DOHC 2005). Furthermore, in light of the primary care strategy DOHC (2001) the focus of health care is being developed within the community setting, lead by General Practitioners, Public Health Nurses (PHNs) and other members of the multidisciplinary team. The question on many people minds is, is there adequate funding, recourses and trained staff in place to deal with the number of complex palliative care cases?

It would appear that the Department of Health and Children and the Irish Hospice Foundation have worked collaboratively in response to the needs of those within the community and paediatric palliative care, concurring with recent advances in publication of paediatric palliative care. However, it would appear that the greatest financial input has come from the voluntary sector. The Irish Hospice Foundation (2010) has vowed to provide somewhere in the region of €2.25 million over the next three to five years to fund the cost of providing eight outreach nurses with specific training to work and care for children with life-limiting illnesses. Furthermore, the Jack and Jill Foundation a registered charity, also provide €3m annually to families whose children suffer with a form of brain damage, providing them with financial and emotion support in their homes. Hynson et al (2003) identified that as home care is central to paediatric palliative care it would appear the most appropriate place to begin supporting in the task of improving the quality of life, reducing fears and allowing families to continue with as much normality as possible within their lives. However, in the case where home care is not appropriate or possible due to the complexity of illnesses, lack of trained nurses or that of geographical problems, a hospice may be more appropriate from that of an acute hospital setting.

It was been well documented that children with a life-limiting illness and their families needing palliative care support, require a holistic approach to their individual case (Wolfe et al 2000). This can be an extremely challenging experience for the health care professional. To provide adequate care it is important to assess the needs of health care professional as well as the service user’s needs. Papafadatou (1997) identified that as health care professionals deal with a death of a child, they too can become disheartened by their failed attempts to save a child’s life, this can happen on different three levels, firstly, the feeling of not being able to save the child’s life, secondly, as a practitioner they could not protect the child from harm and thirdly the feeling of betrayal to the parents who trusted them with their child. The importance of supervision is reiterated by Butterworth and Faugier (1992), where it allows professionals to care for their emotional, social, physical and physiological needs. It would appear easier to be achieved within a hospice due to the central locality of staff.

Having identified concerns related to paediatric palliative care, is it not more commendable to have a paediatric hospice that encompasses all needs supported by highly skilled staff, adapted and equipment within this specific area of medicine. An advantage of a hospice could be that of continuity of care and expertise management of rare and complex conditions. However, a disadvantage could be taking a child out of its familiar environment, causing fear and anxiety. The DOHC (2005) illustrate that only in exceptional and rare circumstances is taking a child out of its home is in the best interest of the child and their family. It only seems natural that grief associated with life-limiting illnesses will have long lasting effects on a child’s siblings and a family as a unit. Wells (2001) outlined that coping with the death of a sibling was an impossible task; a surviving child’s self esteem was directly related to the length and trajectory of the illness experience. Many problems can occur and personality changes in a surviving child can be seen following the death of a child with a life-limiting illness. However, Groot et al (2005) outlined, that these problems were less apparent when a child was cared for throughout the illness within the home environment. Again, this leads one to believe that the most appropriate place for a child to be cared for is that of the home with extensive provision of palliative care in place.

However, Stelle et al (2008) identified little is known about a child’s or families rational for attending a hospice. Benini et al (2008) outlines that in the Veneto region of Italy there is a paediatric palliative care network team supported by a regional paediatric hospice, there is a multi-disciplinary team approach with specialist supervision, training and care integrated within acute hospital services. It would appear that when a child is diagnosed with a life-limiting illness, there is a cascade of expert professionals contacted from the hospice, the child and their family then meet with the skilled professionals affiliated to the case to discuss options and resources available to them; as a result they coordinate care accordingly. The ultimate aim is to try getting the child home, pending influencing factors such as locality, staffing and cost, once a home a continuous reassessment of needs is carried out by the family paediatrician who coordinates care and liaises closely with the members of the multi disciplinary team involved. From this model it would appear that the hospice has multi functions. It appears to provide professional expertise, training, skills, knowledge and is a base for experts within the profession. The above concerns are similar to that within Ireland; the optimum locality for a hospice that is accessible to all within Ireland is of great concern.

Furthermore, the American Academy of Paediatricians (AAP) (2000) cited by Jennings (2005) illustrated that hospice care is different to that of palliative care, as hospice care offers a package of care incorporating multi-disciplinary team workings. However, within the DOHC (2010) it is envisaged that there will be integration and co-ordination of services in a bid to provide an effective and efficient seamless palliative care service for children with life-limiting illnesses and their families within the home. In order for this to be implemented and carried out there will be an amalgamation of services from all organisations within the healthcare system. The DOHC (2005) reiterates the importance of a key worker to act as a link connecting services. The implementation of a children’s outreach nurse will undertake this role in an attempt to co-ordinate services and facilitate the needs of health and social care professionals, (Department of Health and Children 2010).

From the literature, it would appear that nurses have a greater knowledge and experience in dealing with adult palliative care cases (While et al 1996). This is primary due to the limited number of paediatric palliative care cases in Ireland. In 2002 it was believed that there was a population of 1,013,301 children in Ireland (The Government of Ireland 2007). Moreover, the Irish Hospice Foundation (2008) estimated that there are 1,369 children living in Ireland with a life-limiting illness. As there are limited cases of paediatric life-limiting illnesses many cases appeared to be spread over a wide geographical area and this is bound to pose problems for organisations, influencing the levels of available expertise, training and costs European Association of Palliative Care (EAPC) Taskforce (2007). However, under the directions of the DOHC (2010) policy it has recognised that if effective palliative care is required, it can be successfully delivered even if resources are limited. Bearing this is mind, the DOHC (2001), illustrated that there were three levels of palliative care, a minimum of level 1 should be practiced by all staff indifferent of their area of expertise. The role of outreach nurses incorporates the training needs of staff at a local level (DoHC 2010). Furthermore, within the DoHC (2010) document it states there is a requirement for a consultant paediatrician with an interest in palliative care. However, some criticism with lack of limited research within this field and the majority of guidelines are based on opinions and a need for evidence based medicine Straatman et al (2008).

The All Ireland Institute for Hospices and Palliative care (2007) identified that educational programmes were being made available for staff caring for children with a life-limiting illness. This was done in order to raise standards and provide up-to-date evidenced based care for children with a life-limiting illness. However, these programmes are located in Northern Ireland; recent economic difficulties do not promote attendance of staff to courses due to the financial burden and reduced staffing levels within organisations. However, within the current policy the DOHC (2010) have acknowledged that staff should ideally have knowledge, skills and confidence in both children’s and palliative care practices when providing paediatric palliative care. Many of the nurses who are experience within this field appear to work within the acute setting. While et al (1996) identifies that families have expressed a wish that when the time comes their child could die at home, however, there was some unease that without adequate nursing support this would not be possible. The Health Service Executive plan to implement a hospice home care programme, combined with a group of skilled and knowledgeable nurses providing advice and support to parents and other professionals alike who are caring for children at home (DoHC 2010).

Benini et al (2008) advocates that a paediatric hospice is an important link within the paediatric palliative care chain, it can aid the transition from hospital to home, with the aim to achieve some normalisation within the child’s life and prepare them for the home environment. The Cancer Strategy (2007) sets out principles outlining the ways in which palliative care service for the adult population should be developed and met. This is reiterated globally within the World Health Organisation (2007) document. Moreover, The Department of Aging and Disability Home Care (2004) produced a report more specific to the needs of an individual with intellectual disabilities identifying how policies and procedures can be implemented to achieve standardised practice. On a paediatric level, the publication of a national policy is a starting point for things to come. The DoHC (2010) aims to provide training in paediatric palliative care, thus improving standards for those afflict with a life limiting illness. Literature informs the author that both the hospice and the home have equal credibility when implementing palliative care principles. However, firsthand experience speaks for itself, “Time is precious and whatever time a child has left should be used to ensure they are as happy as possible in a home environment” O’Dwyer-Quinn (2010), this is a profound and very heartfelt message sent out by a mother who suffered the loss of her little girl, 5 years later, she remains heavily involved and at the forefront of paediatric palliative care, contributing and present at the unveiling of the national policy on paediatric palliative care in March this year.