What benefits does a childrens hospice service provide - Essay Example

HOSPICE SERVICE Objective: The objective of this review was to arrive at an answer to the question "what benefit does a children's hospice service provide The first aim was to ascertain the need for hospice services in the present atmosphere of families living in various complex-natured environments and secondly the capabilities of hospice service providers and the factors that regulate their activities. Design: Twenty journals in connection with hospice service providers for children were examined. Results: Two main views were extracted from the review: 1) insufficient approach in hospitals towards the care of dying children and 2) palliative care provider's strength and weakness accredited to by the support and reluctance of the parents of dying children respectively. Conclusion: Parents' perception about the children's hospice services play crucial role in determining the qualities of such palliative care providers, since the number of families obtaining the services of hospice homes are increasing. Thus the benefits derived from children's hospice services are awaiting the feedback from parent consumers to continuously change the shape and identity of services. INTRODUCTION: The medical prognosis may assess the nature of a terminal illness but cannot ascertain the actual time of end of a patient. This being the strength of medical science, the palliative care cannot be rejected outright as redundant. It is an opportunity to provide a very special care to the loved kids, who face death in the near future or at a distance, thereby implying the acceptance of a poor prognosis. The National Academies' Institute of Medicine, USA, has boldly suggested that all physicians in paediatric medicine should well be trained in the field of palliative, end-of-life and bereavement care to children. (National Academies Institute of Medicine, USA). There exists a hairline demarcation between hospice services and palliative care services. Hospice services are based on the philosophy of providing comfort and support to terminally ill patients and their families when the life expectancy of the patients is in months. Hospiceprovides support for the emotional, social and spiritual impact of the disease on the patient and family through a team-oriented approach of specially trained professionals. Most hospices have a set of defined services, team members, rules and regulations. Hospice programs generally offer counselling and bereavement services to patients and families both before and after a patient's death. Palliative care services are rendered on the same principles as hospice care for patients with life-threatening illness. Palliative care looks at the emotional and social issues that occur as a result of a serious illness and the effect on the family as well as the patient. Palliative care for patients and their families also involves the comprehensive management of physical, psychological, social, spiritual and existential needs. Palliative care ideally begins at the time of diagnosis of a life-threatening or debilitating condition and continues throughout the person's life. Although palliative care may be an appropriate part of treatment of any complex or serious illness or injury, it is vital in the care of life threatening and/or incurable, progressive conditions. Palliative care is also integral to all health care delivery system settings like hospital, emergency department, home care, outpatient and non-traditional environments such as schools. The interdisciplinary team collaborates with all caregivers in each of these settings, in order to ensure coordination, communication, and continuity of palliative care across institutional and home care settings. Palliative care services generally provide Access to an interdisciplinary team Strategies to optimise pain and symptom management Help with communication between family and the primary care team Enhancing quality of life with emphasis on meaningfulness Assistance with decision-making Coordination of inpatient, outpatient, and home care and Bereavement care. Curative treatments seek to reverse the process of disease, where as the palliative treatments focus on relieving symptoms, regardless of the prognosis. An integrated interdisciplinary approach among the child, family, parents' employers, teachers, school staff, health care professionals, nurses and bereavement counsellors would fetch a nice result in the direction of attaining the goal, viz. allowing the child to die with dignity and without pain or distress. (Robert M. Nelson, Jeffrey R. Botkin, Eric D. Kodish, Marica Levetown, John T. Truman, Benjamin S. Wilfond, 2000) SEARCH STRATEGY: Internet databases American Journal of Nursing, British Medical Journals, CINHAL, PROQUEST and JAMA were searched using search terms ' hospice care', 'paediatric hospice care', 'palliative care', 'end-of-life care', 'pain management' and 'bereavement'. The books Findings: On pressing the contents of the papers and books through the sieve of the two extracted views, it is found that the insufficient approach in hospitals towards the care of dying kids is mainly ascribed to the lack of interaction between the medical professionals/physicians and parents and secondarily due to the volume of cases that the professionals attend. The strength and weakness of the palliative care providers are also determined solely by the participation and reluctance by the parents. The load that heavily pressed the parents in the direction of reluctance was found to be chiefly fiscal. 1. INSUFFICIENT APPROACH AT HOSPITALS: A report study issued by Medline plus dated March 2006 analyses the reasons behind lesser inclination towards the harnessing of palliative care by the parents. A team of researchers at Boston conducted a survey with 96 parents who lost their kids in one of three Boston area hospitals. The demographic statistics presented by the team showed that out of the 58% of the parents who responded to the survey, married mothers were having ideas about palliative care services by health professionals. They were able to identify some six areas of critical importance in dealing with terminally ill kids. They are: - Honest and complete information. Ready access to health care staff. Communication and care coordination. Emotional expression and support by the staff. Preservation of integrity of the child-parent relationship and finally The Faith. Letting the parents in darkness about the condition of their children under treatment irks them much. Although it is quite impossible for a doctor to explicitly reveal the nature of illness approaching a virtual end-of-life, parents never like the physicians to simply vacate the scene to avoid a tragic scenario. This is because invariably all parents want to know the fact that the illness of their children was life threatening from the mouth of a doctor and revelation of such fact from none other than a physician would satisfy a parent. As the doctors of a busy hospital would always be engaged with several patients and moving on periodic rounds, the parents lose hope of contacting them in time of need. Attention by non-duty staff may a little bit ease the situation, but patients and parents consider their services purely temporary subject to confirmation from the doctor attending on the patient. Parents suggested setting up of regular bedtime consultations. Many parents found it difficult to communicate with the doctors attending their wards. Even during conversations with them, the parents either confuse or get confused by the difference in opinion among the doctors. Lack of knowledge of medical process on the part of parents and lack of attentiveness to parents' views on the part of doctors are behind this lapse of communication gap and care coordination. The complete involvement of physicians in reviving the dying children makes them a bit routine. Lack of emotions in their expressions and activities presents a machine-like look on them. Parents' willingness to see a 'real man' in a doctor is thus deferred. Although doctors are supposed to face every patient, his/her illness and pain in pure flesh and blood, the increasing number of cases they attend naturally forces them to go through many cases and case reports on papers and monitors only. This mechanical approach, since facilitates covering a huge number of patients, the feasibility of doctors attending each and every case personally tends to abysmally a low level. To circumvent this snag, feedback from juniors and nursing community can efficiently be harnessed. But in practice, the info supplied by the nursing community who are in direct touch with the patients and families are heavily underrated. The doctors in treatment regard no more than the clinical feedback supplied by nursing communities as useful data. Such interpersonal hang-ups are to be sorted out among the health professionals. The main sore aspect most of the parents feel is that they are not included in decision-making process. By keeping the parents away from the process of decision-making, the doctors are construed to hamper the integrity of the parent-child relationship. As the children could not make decision of their own, their dependence on parents and health care professionals delays the progress in treatment when decision making is carried out one sided. Parents exhibit their reluctance in executing certain instructions by the doctors causing delay in the progress of treatment. Affordable training to health care professionals to cope optimally with the expectations of parents would find a way out. Decision-making, especially at the phase of death of the children is an issue to be dealt with utmost patience and care. A decision to withdraw life-sustaining systems should in no way imply any tinge of opinion that the patient is directed towards 'death-gate'. (AAP, 2000). A consensus with families of dying children ought to be arrived at before taking the decision of withdrawing the life supporting medical interventions. To avoid unrealistic expectations and experiences, the parents/families may want to know the spell of time the child may live after withdrawal of the life sustaining systems. Parents and families are necessarily to be prepared for the event, because the goal of palliative care is only to optimise the quality of the child's experience and not pushing them towards the end. The Faith. This is highly a fluid situation, because, faith always brings along with it a tinge of unfaithfulness/infidelity. Faith is a concept that does not have any constituents of its origin. In other words it is a contrast for suspicion. Religious faith and faith on God involves 'surrender' factor, that is preparedness to accept both merits and shortcomings alike. This preparedness bestows some spiritual knowledge and earthly experiences bringing towards self-confidence, thereby realizing the Self and then the Almighty. To be human is to live in a state of responsibility. The responsibility of God is infinity and to attain proximity to God one must exercise greater responsibility. (Henryk Skolimouski, 1991). Mere faith doesn't work anywhere. Faith on God too some times is shaken when the death predominates. The sudden sorrow due to bereavement make the parents feel betrayed by their beliefs and faiths. (MedlinePlus health Information, HealthDay dated March 6, 2006). 1.2. FINANCIAL BURDEN ON PARENTS: Dr. David Steinhorn and Dr. Eugene Perlov of USA opined the technical hardship in getting insurance reimbursement of hospice services also adds to the reluctance on the part of parents. Most patients and families receive only end-of-life services and this often means in the last few days of the death of the patients. Many professionals and organisations endorse the provision of palliative care from the end point of diagnosis, at which the onset of life threatening condition is established. Such endorsement includes the simultaneous provision of life-prolonging care. While this coordination of care is ideal, many insurers and government programs do not pay for both hospice and palliative care services if they are delivered at the same time. However, Ohio Home Care Waivers are now able to cover both types of services. 1.3. DELIVERY OF DIFFICULT NEWS: Delivery of bad/difficult news to parents is a very crucial part of a doctor's job. The lack of palliative care training places doctors in an uneasy position to divulge the news about the expected death of the child. They need a familiar person in the middle to convey such news to the parents. An expert palliative care nurse full fills this part of the doctor's job efficiently. This may be because of the image created of doctors that they will stop death or at least defer it, which in truth is otherwise. As human beings with comparatively greater knowledge of medicine and biological developments/changes, doctors strive hard to save a dying child. Nothing more can be expected from them. The results of their endeavour cannot be included in their prognosis, since most of the prognosis factors are purely related to clinical facts and findings. Divulgence of a bad news to parents needs emotional expression that medical professionals lack much. Hospice services and its qualities in other field especially medical field play a pivotal role at this juncture. This is because experts of hospice service providers are trained in dealing with not only the ailing child but with the entire family as a whole. (Nancy Conro, Judith Larson, Sarah Scofield, BarbaraSourkes, Harvey Cohen, 2002) 2. THE STRENGTH AND WEAKNESS OF PALLIATIVE CARE PROVIDERS: Despite the fact that many parents now a day wish to avail the services of hospice homes, the views about the services differ. Linda Maynard (2005) evaluated the parents' perception about hospice services by adopting a novel method of 'parent lunch' for discussing their views and asserted many factors. The team derived a mixed response from the parents. East Anglias Children's Hospices (EACH) at UK's efforts to dismantle a general notion that hospice homes are for 'death only' became more costly as the team at EACH strived hard to offer components of palliative care and supportive care immediately after diagnosis, which continued during the course of illness whether the outcome ends in cure or death. Such preparedness and involvement of EACH has inculcated a sort of acceptability in the parents. Thus the main motto of a hospice home is derived as " to create an atmosphere of eternal love" around the families of ill children and bereaved families. (Linda Maynard, Tracy Rennie, Julia Shirtliffe and David Vickers, 2005) 2.1. BEREAVEMENT FOLLOW UP: Bereavement management is a very difficult part of health care professionals' job, especially when they work in the intensive care unit of a hospital where the terminally ill children are at the moment of dying and in the process of dying. Only 6% of doctors have any training in dealing with the grieving parents. Due to the lack of knowledge in bereavement management many a health care professionals erroneously believe that the children need to be protected from the knowledge of their death and consequently they are rarely informed that they are dying. (Russel P.S., Alexander J., 2005). A best bereavement counsellor would at the outset try to wipe off the bereavement of the dying children and would focus on a follow up management with the parents later. Bereavement follow-up is another characteristic of hospice service, which a very few doctors allow to creep in their profession. Mere communication of some clinical/ medical info by a doctor to the bereaved parent consoles much. It out weighs thousands of philosophical solaces offered by kith and kin. Parents are enlightened by clinical facts and the lapses on their part, if any, could be corrected in forthcoming years with their siblings left. Although the humane approach under pins the medical profession, the technicalities and modalities offered by palliative care/ end-of-life care experts are widely recognised by many parents. 2.1.1. CARE GIVING DURING DEATH: Care giving at the time of death of a child is a highly sensitive part of the job for all including parents. Professional's duty includes several activities like saving mementos, discussing organ donation, and returning personal belongings. The utmost important activities included in this area are assisting the family to have the death of the loved child in the location they wish and spending uninterrupted time with the child before and after the death. When these two areas are attended with much care and involvement the quality of the care, especially the end-of-life care, provided would certainly be graded the topmost by parents and society in general. Kimberly A. Widger et al (2004) vividly present this type of care providing that leaves 'positive memories among the unhappy ones'. The team had identified some fourteen components as key factors of quality end-of-life care system. They are: - i. Information transmission (to parent and to child). ii. Preparation for death and care at death. iii. Bereavement care. iv. Interpersonal aspects and competency of health professionals. v. Clarity and honesty of communication. vi. Parent role. vii. Support for the family. viii. Pain and symptom management. ix. Decision making. x. Psychosocial and spiritual needs of the child. xi. Availability and accessibility. xii. Coordination and integration. xiii. Respite care and xiv. Financial arrangements. The author indicating the difference between childcare tool and adult care tool, wherein the bereavement care is not included, efficiently discusses the care during death. He ascribes the difference to the fact that parent grief is considered more intense than the grief after the death of a spouse, sibling and parent. The author valuing the children as, the invaluable assets of the society, stresses the need for development to be brought out in care-tools to specifically assess the needs of children as well as the needs of their families. (Kimberly A. Widger, Krista Wilikins, 2004, "What are the Key Componants of Quality Perinatal and Paediatric End-of-Life Care A Literature Review", Journal of Palliative Care 20:2, 105-112 ) The end-of-life care in its patient centred phase is also an equally important aspect in hospice services. The values of physicians and their judgements play vital role in this area. Dr. Burns et al () conducted a questionnaire survey among physicians and nurses. He found that in many areas the views of doctors differed from that of nursing staff. Physicians' favouring the use of appropriate sedation and analgesia at the end of life was not univocally acceptable to all concerned. But the importance of patient centred decision-making process forced the medical professionals to abide by such 'medical futility' guidelines directed by physicians. Dr. Burns also indicated the different results of the studies conducted at different times, in some of the studies the views of doctors and nurses were going in harmony with each other. Clinical decisions like withdrawal of life supporting systems were the main area where the opinions of working nursing community and deciding physicians play effective role. (Dr. Burns et al, 2001, "End-of-life care for children: Bridging the gaps", Critical Care Medicine Vol. 29, No. 3) 2.2. HOSPICE SERVICES AT USA: USA that has recently focussed her concentration in hospice services has earmarked the services of Caunuck Place Program. Betty Davis in his " The Impact on Families of a Children's Hospice Home" found that nearly 93% parents are satisfied with services of Caunuck Place. Many families felt contended over their stay together in times of distress, in contrast to the hospital situations where they are separated. The support rendered by Caunuck Place had been appreciated by most of the parents, since they felt they are protected during their child's terminal illness. (Betty Davis, John B. Collins, Rose Steele, Ingrid Pipke and Karen Cook, 2003) 2.3. ROLE OF PARENTS IN HOSPICE SERVICES: UK is the best place on earth that renders excellent palliative care for children. Palliative care systems in UK allows parents to exercise their right to choose the place of treatment for their children. Children are free to access both local hospitals and their own homes with the help of community nurses. The smooth interaction between hospitals and community nurses create a conducive atmosphere and parents do not feel difficulties in getting both medical treatment and home-based nursing support simultaneously. (Julia Hannan, 2005) Rose Steele (2005) of York University, Toronto, Canada had depicted the role of parents in managing ill children as highly complex natured tasks combined with emotional and religious aspects. As admitted by the author the article did not give any clinical or medical guidelines to professionals in treating the ill children especially children affected by neurological disorders. But the article cleverly emphasised the need for the professionals to be attentive to the needs and calibre of the parents on assessing the illness trajectory as a whole. Parents want to make the best of the life for the terminally ill child however short the spell may be. During the first phase of the illness they need much information to regulate their own way of life where in the care giving of the ill child predominates. Planning usually includes children; and without child parents' future is questionable. Hence the entire life styles of parents changes when a child falls ill especially illness such as NLTI (Neurologic Terminal Illness). Even an orthodox family having a strong hold on religious faith is forced to concentrate much on the ill child. Attending religious ceremonies, which once were enjoyed however time-consuming they may be, would be considered time-strained during the period of managing ill child. The fatal eventuality of the illness on the child either reaffirms the faith on God or strains the religious faith of the parents. Those parents who have controlled their life styles in such a way to accept things that veer their activities as something beyond their realm are mentally stable and neutral. The role of parents in managing an ill child involves a little part in medical sphere and greater aspects of emotional and other responsibility-bearing activities. Unfortunately, professionals do not always recognise that parents need much time to learn some clinical skills in managing their ill child. (Rose Steele, 2005, "Strategies Used by Families to Navigate Uncharted Territory When a Child is Dying", Journal of Palliative Care, 23:2; 103-110) 2.4. THE NEED FOR HOSPICE SERVICE: Ruth Davies (2003) studied the mortality rate of children with life-limiting conditions and found that significant number of children died of severe cerebral palsy, muscular dystrophy and severe learning difficulties. Family nursing support and respite care were identified in this study to play crucial role in supporting the parents with terminally ill kids. (Ruth Davies, 2003, ) 2.5. THE QUALITY OF HOSPICE /PAEDIATRIC PALLIATIVE CARE SERVICES: The involvement of parents as legal guardians and direct caregivers is well understood by the palliative care providers. Especially in decision making situations the role of even grown up adolescent population are not considered important due to the nature of illness and their dependence upon the parents or paediatric health care professionals. But unresolved feelings of isolation and distress cause behavioural disturbances in children leading to psychosomatic problems. Thus paediatric palliative care should be considering many factors including the needs of parents and needs of siblings as well. (JL Hynson and SM Sawyer, 2001) 2.6. PAIN MANAGEMENT: Pain management in terminally ill children is an utmost important part of the hospice services. Advances in pain management have been made. But still much improvement is to be brought out. (Marilyn Hockenberry-Eaton, Patric Barrera, Melody Brown, Sarah J. bottomley and Jill Brace O'Neill, 1999) Pharmacological pain intervention is widely used in children with terminally ill conditions. But in case of children with cancer, pain management has to be focussed with extra care. Understanding pain and its nature with humane tendency and knowledge of new interventions methods of pain medication are essential. Before understanding the physiology of pain, etiology of cancer pain, assessment of pain and different strategies of pain management, a caregiver must find all possible ways to do away with the barriers to effective pain management. The reasons behind the lack of pain control include myths and fears about pain encountered by children patients and health professionals. Lack of knowledge on state of the art practices adds to less efficiency in pain management. Enlightenment through the knowledge of facts against the myths would pave way to clear the barriers. MYTHS FACTS Young infants do not feel pain Experiencing nociception begins early in the fetus itself at a stage of 26 weeks. Children easily become addict to narcotics. Less than 1% of children become addict and opioids are no more dangerous for children than they are for adults. Children tolerate pain better than adults. Children's tolerance for pain increases with age and younger children experience higher levels of pain than adults. Children are unable to locate the spot of hurt. Children's way of expressing their pain may differ from that of an adult, but they do express by pointing the spot of pain. Children become accustomed to pain. Children exposed to repeated painful procedures experience increasing anxiety and perception of pain. Children express high intensity pain at the time of experiencing. Children may hide their pain experiencing out of fear of administration of a painful injection or fear of entering hospital. Children's behaviour reflects their intensity of pain. Children's behaviour is not a specific indication of their pain level. Fear is also an inhibiting factor that causes less effective pain management. Fears such as fear of respiratory depression, fear of addiction, fear of pain are to be wiped off from the minds of children patients in an efficient manner. Of the fears, the fear on the use of morphine on cancer-affected children is highly sensitive. Fear of the use of morphine means the child is nearing death. In an attempt to avoid facing that reality, the children may not acknowledge pain. When compared to the pharmacological intervention of pain management, non-pharmacological pain intervention is found to have greater effectiveness in pain management. Non-pharmacological management of pain involves techniques like distraction, muscle relaxation combined with breathing exercises and guided imagery. Specialised clinical procedures include therapeutic touch and acupressure. A very crucial period of pain management is the dying phase of the cancer-affected children. When the goal of care tends to shift from curative purpose to palliation of symptoms and support through a pain free dying process, health care professionals ought to inform parents of the options available for managing pain and other symptoms. Families and parents must repeatedly be assured that continued attention and care would be provided to the child so that the kid leaves peacefully. Pain in terminally ill children varies with the degree of physical damage of tissues. Psychological, social and cultural factors also have their effect on the pain experiencing by the children. Their effect on pain differs significantly among individual children. Health professionals and palliative care providers must scrupulously follow the instructions stipulated for them to carry out effective pain management. It would be fair on their part to imbibe the seven goals of pain management. They are: . The child can sleep undisturbed by pain. . Side effects from pain medications will be prevented or minimized. . The child is pain-free when at rest. . The child can move about or be handled without discomfort. . The family is educated regarding the pain treatment plan. . The family is involved in choosing the most effective and appropriate pain management for the child. . The family is able to identify increasing pain and provide analgesics to relieve the pain. 2.7. NEED FOR CHANGING THE FACE OF PALLIATIVE CARE SERVICES: Pat Jackson and Robinson (2003) had already formulated the need to change the face of hospice services. She had discussed in detail the need for institutional backing including fiscal strength and the need for a coherent regulatory framework. She had aptly pointed out the need for government's recognition of hospice services, which were operating mainly on the funds raised by voluntary organisations and charity associations of affected individuals. (Pat Jackson and Robinson,2003, "Children's hospices:where do they fit", Critical Social Policy, 23(1):103-112) Time has come to change the face of palliative care services, which has so far focussing adult patients and recently the children. A new phase is now evolved namely, the family-centred palliative care services. Since caregivers value self-reliance and independence, an approach to identify high-risk families and develop a new model of support has become a need of hour. Abraham S. Bartell (2005) had derived such model of support in the name of 'family-focussed grief therapy' (FFGT). He had classified the families under three groups on the parameters of their functioning levels during palliative care and bereavement. The parameters used were the family members' perceptions of their cohesion, communication and conflict resolution. Based on these, the team had categorised the family groups as well-functioning, intermediate and dysfunctional ones. The well-functioning groups were characterised by their ability to resolve conflicts constructively, to tolerate differences of opinion and effective maintenance of communication and cohesion. This group of families are found to have very low levels of psychosocial morbidity. The dysfunctional group of families were further classified into two more groups: hostile and sullen. Hostile groups are distinguished by their low cohesiveness, high conflict and poor communication. The sullen groups of families had moderate impairments on these three domains. Those groups of families that exhibit moderate cohesiveness but still prone to psychosocial morbidity are termed 'intermediate'. The team is found to give importance to the aspect of bereavement support and suggested the FFGT as most promising approach. (Abraham S. Bartell and David W. Kissane, 2005 ). CONCLUSION: The analyses of the literature leads to know that hospice care and palliative care are the area that are attracting attention of many very recently. Health professionals, who are aware of the ideas of such services and care, are in a position not to focus completely on. Families are experiencing financially restrained to avail the services provided by private or organisations in this regard. The emphasis on a broad multidisciplinary approach, as far as hospice and palliative care services are concerned, as defined by WHO is yet to be understood in its full sense. Instead of considering hospice, palliative and end-of-life care as individual services to mankind, if they are collectively given the status of a 'science' in between life and a nigh-death, the benefits that are presently derived from such services would positively become the rudimentary alphabets of a 'hospice-dictionary'. Reference List- Abraham S. Bartell and David W. Kissane, 2005 "Issues in Paediatric Palliative Care: Understanding Families", Journal of Palliative Care 21:3; 165-172 Betty Davis, John B. Collins, Rose Steele, Ingrid Pipke and Karen Cook, 2003, "The Impact on Families of a Children's Hospice Program", Journal of Palliative Care; spring; 19,1; Proquest Medical Library, pp 23 Dr. Burns et al, 2001, "End-of-life care for children: Bridging the gaps", Critical Care Medicine Vol. 29, No. 3 Henryk Skolimouski, 1991 "Dancing Shiva in the Ecological Age" pp 41 JL Hynson and SM Sawyer, 2001, "Paediatric Palliative care: Distinctive needs and emerging issues", Journal of Paediatric Child Health, 37:323-325 Julia Hannan, "Advanced cancer in children: how parents decide on final place of care for their dying child", International Journal of Palliative Nursing, 2005, Vol11, No. 6 Kimberly A. Widger, Krista Wilikins, 2004, "What are the Key Componants of Quality Perinatal and Paediatric End-of-Life Care A Literature Review", Journal of Palliative Care 20:2, 105-112 Linda Maynard, Tracy Rennie, Julia Shirtliffe and David Vickers, 2005, "Seeking and using families' views to shape childrens' hospice services", International Journal of Palliative Nursing, Vol 11, No.12 MedlinePlus health Information, HealthDay dated March 6, 2006 @)(http://www.nlm.nih.gov/medlineplus/news/fullstory_30653.html Marilyn Hockenberry-Eaton, Patric Barrera, Melody Brown, Sarah J. bottomley and Jill Brace O'Neill, 1999, "Pain Management in Children with Cancer", Booklet Published by Texas Cancer Council National Academies' Institute of Medicine, USA @ (http://www4.nas.edu/news.nsf/6a3520dc2dbfc2ad85256ca8005c1381/5a62ce31d73a82ab85256ca70072dcb0OpenDocument retrieved on 30th March 2006). Nancy Conro, Judith Larson, Sarah Scofield, BarbaraSourkes, Harvey Cohen, 2002, "Family Perspectives on the Quality of Pediatric Palliative Care", Arch Pediatr Adolesc Med. 156:14-19 Pat Jackson and Robinson,2003, "Children's hospices:where do they fit", Critical Social Policy, 23(1):103-112 Robert M. Nelson, Jeffrey R. Botkin, Eric D. Kodish, Marica Levetown, John T. Truman, Benjamin S. Wilfond, 2000, "Palliative Care for Children", AAP, Committee on Bioethics and Committee on Hospital Care. Paediatrics, Vol 106 No. 2:351-357 Rose Steele, 2005, "Strategies Used by Families to Navigate Uncharted Territory When a Child is Dying", Journal of Palliative Care, 23:2; 103-110 Russel P.S., Alexander J., 2005, "Bereavement Management in Paediatric Intensive Care Units", Indian Paediatrics,2005,42:811-818 Ruth Davies, 2003, "Establishing need for Palliative care services for children/young people", British Journal of Nursing, 12, 4: ProQuest Nursing Journals, pp 229 Read More