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Palliative care

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A. Hunt1,2, R. Hain3, S. Jassal4, A. Thompson5.

1 Royal College of Nursing Institute, Radcliffe Infirmary, Oxford; 2 Department of Child Health, University of Wales College of Medicine, Llandough Hospital, Cardiff; 4 Rainbows Hospice for Children, Loughborough; 5 Child Health Services, North Warwickshire PCT, Nuneaton

PaedPalLit is a web-based abstracting journal hosted by the Association for Children with Life-threatening or Terminal Illness and their families (ACT). This initiative seeks to make literature relevant to Paediatric Palliative Care (PPC) more readily available to clinicians.

Aims of study: To identify the range and spread of papers relevant to PPC published in 2000/ 2001.

Methods: Papers, previously identified by PaedPalLit, were analysed by journal, type of paper and subject area.

Results: Forty-six papers published in 2000 and 54 in 2001 were identified. Papers were published in 53 journals. The largest number were published in paediatric medicine (40 papers published in 15 journals), general / adult medicine (16 papers in 7 journals); paediatric nursing (5 papers in 5 journals); adult / general nursing (11 papers in 9 journals); palliative care (14 papers in 8 journals); psycho-social (8 papers in 7 journals) and ethics journals (2 papers in 2 journals). Forty-one papers were reports of primary research and 7 were secondary, the remaining 52 being advisory, descriptive or discussion papers. Research methods most commonly used were survey (10), qualitative (6), epidemiological (5) and longitudinal studies (4). Only one (non-randomized) clinical trial was reported. Children with cancer were the focus of 22 papers, whilst 25 were more generally related to palliative care issues in the paediatric population. In 13 papers, ethical decision making was the focus, in particular withdrawal of treatment in critical care, neonatal and oncology settings.

Conclusions: Papers relevant to PPC are widely and thinly distributed. Developing an effective and reliable search strategy to identify publications is important but challenging. Progress in research and evidence-based practice may be hampered by the wide distribution of relevant publications. PaedPalLit will help to address this problem.


L. Brook, S. Williams, M. Farrell.

Alder Hey Children’s Hospital, Liverpool, UK

Aims: To determine the numbers and characteristics of children dying in hospital who may benefit from palliative care services. To determine whether there are identifiable points the child’s illness where palliative care services, including an integrated care pathway for the terminal phase, can be introduced.

Methods: Retrospective case note review of all patients dying within the hospital (excludes A&E) between April 2000 and March 2001.

Results: 70 deaths were identified, representing approximately 1/3 of the paediatric deaths in the strategic health authority per year. 37(53%) patients had been transferred in from other hospitals. 53(76%) patients died on PICU and 15(21%) on the wards. Case notes were incomplete for four patients. Of the remainder: 10(15%) patients had full resuscitation, 23(35%) had some form of DNAR order, 30(45%) patients had intensive care withdrawn and 3 were declared brain dead. 8 patients died from acute illnesses (infection, trauma). 26 patients had significant congenital heart disease cardiac disease (Alder Hey is a national centre for paediatric cardiac surgery). When these patients were excluded almost all patients (88%) died a palliative death with a DNAR order or withdrawal of intensive care. Three stages in the disease trajectory were identifiable:

  • Diagnosis of a life threatening or life limiting illness 30 (94%)

  • Recognition that the child was now critically ill and that death was a likely outcome (corresponding to a phase of active palliative care)

  • Recognition that death was now inevitable, corresponding to the terminal phase (97%). With a clear peak in the last 48 hours of death in 18(56%).

Conclusions: Death on a paediatric ward is relatively rare even within an acute paediatric hospital. A large number of children die in a tertiary centre with the potential for social and cultural isolation. For the majority of patients there appears to be a clearly identifiable terminal phase of approximately 48 hours similar to that in adults. The introduction of an integrated care pathway is planned to support patients and staff at this difficult time.


A.K. Hodgson, O.B. Eden.

Young Oncology Unit, Christie Hospital, Manchester, UK

Introduction: There has been increasing interest in recent years in the palliative care needs of adolescents and young adults. In order to help these patients most effectively, it is important to understand how the illness is affecting them. However, few studies have looked at the experiences of young people with any kind of advanced disease and none has looked specifically at those of patients with recurrent or metastatic cancer.

Aims: To describe and understand the experiences of a small cohort of young people with recurrent or metastatic cancer, looking particularly at how the illness has affected them, how they have coped with it and their hopes and concerns for the future.

Method: Face-to-face semi-structured interviews were conducted with patients aged 16–24 years under the care of the Christie Hospital. Interviews were audio-taped, transcribed and then analysed to elicit the main themes. Patients were re-interviewed 2 months later, to allow confirmation and further exploration of themes from the first interviews and to determine whether any issues had changed over time.

Results: 7 patients were interviewed, mean age 19 years (range 17–22 years). 6 had metastatic disease – Ewing’s sarcoma (3), malignant melanoma (2), osteosarcoma (1) - and one had relapsed ALL. Most of the young people felt that the illness had impacted on all areas of their lives. The main themes were adjustment to changed circumstances, acceptance of the illness as part of life, increased appreciation of life and family, altruism towards others, abandonment by friends, anger towards certain people and situations, and anxiety for the future.

Conclusions: This study gives detailed information about the experiences of young people with recurrent or metastatic cancer. The implications for the care of these patients will be discussed.


G. Watterson, R. Howard, A. Goldman, J. Denyer.

Great Ormond Street Hospital / Institute of Child Health

EB is a hereditary bullous disorder, characterised by the development of painful skin blisters following mechanical trauma, in which analgesia can be a major problem. It has been demonstrated in animal models that there is a sprouting of sensory neurons during inflammation of the skin and that μ opioid receptors are present on peripheral nerve terminals. This offers the potential to provide topical analgesia without systemic absorption, as there is disruption of the perineural membrane, which should permit peripheral transport of opioids.

Aims: To investigate the efficacy of topical opioids as analgesia in EB.

Method: The analgesic effect of morphine in Intrasite gel has been piloted in three EB patients aged 5, 13 and 16 years. A dose of 10 mg of morphine mixed with 15 g of Intrasite gel was applied to the dressing during the usual dressing changes over a two week period. Pain diaries were completed by the patients or parents, assessing acute and chronic pain, sleep, and mobility. No other changes of analgesia were made throughout this trial period.

Results: In all three patients the morphine provided pain relief within one hour of application. Sleep and mobility also improved. No adverse effects were noted.

Conclusions: The pilot study suggests that topical opioids will be effective as analgesia in EB. Ethical approval for a randomised controlled, double-blind, placebo controlled study with crossover design has been granted and patients are currently been recruited.


J. Venables, B.A.M. O’Hare, J.F. Nalubeg, M. Nakakeeto, D.P. Southall.

Child Advocacy International in collaboration with Mulago Hospital Department of Paediatrics, Kampala, Uganda

Aims: Palliative care should be available to all children with life limiting illnesses. In Africa one of the biggest causes of death in childhood is HIV infection yet end of life care is sparse. The aim of this paper is to share experience of caring for such children.

Methods: In 2001 a mobile hospice was established to provide a comprehensive package of care to AIDS orphans in Uganda, including social, nutritional and psychological support, but with the primary emphasis on medical care.

Results: We describe the symptoms most affecting quality of live in a cohort of children (median age = 7 years) and their families and novel means of palliation in a resource poor setting. The use of a small number of selective drugs and non-pharmacological measures can impact significantly on the ability to carry out activities of daily living. Ongoing counselling, peer groups and help with disclosure methods have been adapted to the very special needs of this population.

Conclusions: All children have a right to a continuum of palliative care, ensuring an improved quality of life wherever they may live. Cultural and socio-economic differences may obligate different means of providing such care, but the principles of active and compassionate palliation are equally valid.


Parmar, Mackie, Fry.

Naomi House Children’s Hospice, Winchester, Hampshire

Introduction: Duchennes Muscular Dystrophy is a sex linked recessive, neuromuscular disorder. Understanding the psycho-social impact on the young person is important to provide comprehensive care to this group.

Aims: To assess the impact of DMD on the psychosocial life of the young person in order to inform the provision of services for this group at Naomi House.

Method: All children with DMD aged over 12 years and currently attending NH were eligible. Assessment of psychosocial functioning was performed with a structured questionnaire designed for this audit along with a semi-structured interview. Consent was obtained and interviews were audio taped.

Results: 5 out of 15 eligible adolescents have been interviewed. Currently all subjects acknowledge the serious nature of DMD and identify the difficulties it causes to those close to them. Interestingly the majority felt that their illness had not affected their friendships. Although this group did not feel angry they did describe anxiety and fear in relation to DMD, in particular their stepwise deterioration and death. Data, however, will be presented on the full sample and further thematic qualitative analysis will be performed.

Conclusion: The findings from this audit will identify areas for the development of further psychological and emotional support to this group at Naomi House.


A. Goldman, M. Hewitt, J. Imeson, M. Childs, on behalf of Palliative Care Working Group.

UK Children’s Cancer Study Group, University of Leicester, Leicester LE1 6TH

Introduction: 35% of children with cancer still die and the majority will do so from progressive disease. There have been no prospective studies assessing the incidence and spectrum of symptoms occurring in children dying.

Method: Paediatric oncology nurses involved in providing palliative care completed questionnaires, collecting information on symptoms and symptom control in all children receiving palliative care directed by the 22 UKCCSG centres over a 6 month period. The forms were completed monthly until the child’s death, detailing the nature of symptoms present during the proceeding 4 weeks and their management. Each symptom could be assessed as ‘no problem’, a ‘minor problem’, a ‘major problem responding to treatment’ or a ‘major unresolved problem’.

Results: Patients: 185 children were entered into the survey and 169 were considered eligible. 549 forms were completed. Mean age was 8.8 years (4 mths to 19.9 yrs). There were 92 boys and 77 girls. These children received palliative care for a median of 33 days (range 0 to 354 days). Symptoms: Pain, weakness, anorexia and nausea were present in more than 50% of patients when palliative care began but only pain was ranked as ‘major’ in more than half. During the last month of life the above symptoms plus weakness, weight loss, mobility problems, constipation, vomiting, and increased sleep were seen in more than 50% of patients. Only pain and weakness were judged to be major problems in more than half of patients. Most of these symptoms, however, were resolved by active intervention. Pain was a ‘major unresolved’ problem in only 5%, 2% and 11% of patients with leukaemia, CNS tumours and solid tumours respectively during the last month of life.

Discussion: Children receiving palliative care have a wide range of symptoms and their incidence is now quantified. Active management is able to resolve many of them but some remain resistant.


M. Hewitt, A. Goldman, J. Imeson, M. Childs, on behalf of Palliative Care Working Group.

UK Children’s Cancer Study Group, Leicester

Introduction: 35% of children with cancer still die and the majority will do so from progressive disease. The control of pain during the terminal period is clearly of utmost importance. Detailed information on current practice remains unclear.

Method: Paediatric oncology nurses involved in providing palliative care completed a questionnaire form. Information was collected on care and treatment given to all children receiving palliative care directed by the 22 UKCCSG centres over a 6 month period. These forms were completed each month until the child’s death.

Results: Patients: 185 children were entered into the survey and 169 were considered eligible. 549 forms were completed. Mean age was 8.8 years (4mth to 19.9yr). There were 92 boys and 77 girls. Analgesia: Four children required no analgesic support at all, 8 needed non-steroidals only and 6 needed codeine only. 87% received strong opioids at some stage during their period of palliative care. Of the completed forms, 54.8% (285/520) recorded the use of morphine, 23.5% (123/516) diamorphine and 7.4% (38/513) used fentanyl. 49.4% used strong opiods during the first month and this rose to 88.1% (111/126) during their last month of life. Standardised opiod doses could be calculated for 101 children. At the start of palliation the mean dose was 2.83 mg/kg/day and this rose to 19.9 mg/kg/day at the end of palliation.

Routes of administration: Oral route in 60.1% of forms (285/474), intravenous in 21.4% (93/435), subcutaneous in 14.4% (62/431), transdermal in 9.8% (41/420) and rectal in 5.5% (23/416).

Discussion: The study has some limitations and these will discussed. It does, however, capture data on current UK practice and shows the drugs, doses and routes used in management of pain in the period of palliative care.


G.E. Haythornthwaite, K.S. Sawhney.

High Wycombe Hospital, South Buckinghamshire NHS trust

Aims: In 1997 the ACT and RCPCH published “A guide to the development of children’s palliative care services”. This recommended that all NHS trusts develop a database to recognise children with palliative care needs as a distinct group. Five years later few trusts have such a database. We recently developed a paediatric palliative care database for our population.

Method: An existing condensed list of infant and child mortality was modified to compile a list of ICD-10 codes to include all disorders associated with children’s palliative care needs. This was cross-referenced with 2 existing databases:

  1. The child health database in the community paediatric department

  2. Hospital clinical coding system (inpatient consultant episodes).

The resulting list of patients included some without palliative care needs because some of the ICD-10 codes used give a range of disorders. These children were excluded from the list by a 3-stage process:

  1. Review of the patients’ extended ICD-10 code

  2. Review of patients’ notes

  3. Discussion with the child’s named consultant.

The list was then copied to consultants to make sure each of their patients was accounted for.

Results: 84 patients were identified by this search. These are now kept on a database maintained by the palliative care co-ordinator. An open referral system with monthly multidisciplinary meetings now operates.

Conclusion: This system forms a starting point for developing a database with continual refinement by open referral and multidisciplinary discussion. This database improved service planning for children with forthcoming needs from palliative care services.


F. Craig, J. Hannan, A. Douglas, A. Goldman.

Great Ormond Street Hospital for Children NHS Trust Symptom Care Team

Aims: To document the out of hours work of a paediatric palliative care team that provides telephone support to parents and health care workers.

Methods: A prospective audit over a twelve month period, documenting the work of a palliative care service providing out of hours telephone advice to families and health care workers. All calls to the service were recorded on data sheets designed for the study.

Results: Sixty-five patients were referred to the on call service (62% malignant disease and 38% non-malignant). Two hundred and seventy two telephone calls were received. The majority of calls (86%) were received before 11pm and were initiated by the parents (22.6%) or the local community nurse (15%). Eighteen percent of calls were about more than one issue. Pain was the most frequently reported symptom (26.5%). A large proportion of calls led to a change in medication (32%), but very few (3%) required additional professional services or medication that was not already available at home.

Conclusions: Palliative care issues that arise out of hours can usually be managed through a telephone support service. With proactive preparation and anticipation of potential problems, appropriate medication should be available in the home and necessary professional support already enlisted. Out of hours telephone support should be considered as a means of providing a 24 hour service when developing national paediatric palliative care provision.


L.M. Cuddeford1, S. Jones2, on behalf of DCCNT evaluation team.

1 Childrens Community Centre, Bacchus Rd, Birmingham; 2 DCCNT Gulson Hosp, Coventry

Aim: To establish the views of professionals on the role of the Coventry and Warwickshire Diana Children’s Community Nursing Team (DCCNT).

Method: Postal questionnaires were distributed to known referrers, general practitioners and paediatricians based across both regions. The questionnaire was devised to look at 3 areas: a) professionals knowledge and understanding of the working of the team, b) professionals opinion as to essential services, c) professionals satisfaction with the work of the team plus feedback from children and families.

Results: 520 questionnaires were distributed. 52% of the 156 respondents indicated they were unaware of the team (9% requesting more information). Knowledge of the team was better in the referrers but there were still areas of confusion. Terminal care was rated as “essential” most frequently (95% referrers and 75% of total responders). Those who referred to the service scored available services as “essential” more frequently. Satisfaction with the service was assessed in the 32 professionals who had contact with a child known to the team. Only 5 respondents had reservations about making a referral. 2 had a referral rejected. 7 suggested changes to the team. 88% felt contact with the DCCNT had improved overall care for families. Least improvement was felt to have occurred in liaison for families and management of symptoms.

Conclusion: The majority of professionals felt the DCCNT has improved overall care for families with children with a life limiting condition. There seem to be gaps in promotion of the team, communication with other professionals and overlap of roles with Community Children’s Nurses.


A. Thompson.

Child Health Services, North Warwickshire PCT, Nuneaton, Warwickshire

Aims: To assess whether a multidisciplinary forum supported effective care delivery at local level to the population of children with palliative care needs.

Methods: A retrospective audit of an 18 month period (March 2000-August 2001) of the locally based Children’s Palliative Care Group was undertaken to assess professional representation and usage of the group, diagnostic groups discussed, areas raised for discussion, educational topics addressed.

Results: On average the forum was attended by 9 professionals groups from within Health, Education and Social Services, as the core members – Children’s Community Nurses, Community Paediatrician, Health Visitor, Social Worker, Educationalist, Psychologist, Chaplain, Special Needs Nurses, Diana Team. 70 different children were discussed over the audit period, mean of 21 on any occasion, some children on several occasions. Underlying conditions were: Oncology 24, Neuromuscular 7, Neurological 21, Cardiac 6, Metabolic 2, Respiratory 3, Renal 2, Haematological 1, Other 4. Main areas raised for discussion were Changing Health State 197, Professional Roles 93, Educational Support 88, Social Needs 120 (Housing 24, Transport 9, Finances 38, Equipment 49), Respite 93, Psychological Needs 32, Sibling Support 30, Therapy Needs 29 (682 ‘topics’ at 343 case discussions re 70 children). Educational updates included GVH Disease, TPN, Enteral Feeding, Community based Ventilation.

Conclusions: The forum was concluded to have provided an effective opportunity for regular multiagency planning and review at individual case and service level, and an information exchange forum within and across agencies. It supported appropriate use of resources, and effective and evidence based working between professional groups and agencies across time and care settings for children with palliative care needs which frequently presented as complex care needs.