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Palliative medicine and ethics and law forum joint session

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A. R. Barclay1, C. E. Paxton1, A. Coates2, P. M. Gillett1, D. Hoole2, J. Livingstone2, G. Menon3, F. Munro4, D. C. Wilson1.1Department of Paediatirc Gastroenterology Royal Hospital for Sick Children, Edinburgh, UK; 2Nutrition Support Team, Royal Hospital for Sick Children, Edinburgh, UK; 3Department of Neonatology, Simpson’s Memorial Maternity Pavillion, Royal Infirmary of Edinburgh, Scotland, UK; 4Department of Paediatric Surgery, Royal Hospital for Sick Children, Edinburgh, UK

Background: The long term outcome for intestinal failure has been dramatically improved by parenteral nutrition, which allows growth while awaiting bowel adaptation or definitive treatment (small bowel transplantation). Recurrent bacterial sepsis and parenteral nutrition -associated cholestasis (PNAC) contribute to long term morbidity and mortality in intestinal failure. Few UK data exist as to long term survival and outcomes in this patient group in the post- parenteral nutrition era.

Aims: To describe the long term outcome and survival of patients referred to the intestinal failure team over the first 8 years of its existence at a regional paediatric centre with complete case referral for prolonged parenteral nutrition post-corrected age of term and serving a population of 1.25 million people.

Methods: Retrospective case note analysis detailing patient demographics; diagnosis; surgery, bowel length, ileo-caecal valve (ICV) removal; parenteral nutrition, septic episodes, central line removal; PNAC, referral for transplantation; enteral adaptation; survival, death and organ transplantation.

Results: 23 patients were referred over 8 years, with all but 3 being parenteral nutrition dependent from birth. Diagnosis included short bowel syndrome (SBS) (18), neuromuscular abnormalities (4), and congenital enterocyte disorder (1). 12 696 days of parenteral nutrition were delivered with 314 confirmed episodes of central line sepsis (Coag neg staph 43%, Gram negatives 45%) with an average of one septic episode per 40.4 patient days. 144 central lines were required, lasting an average of 88.6 patient days per line. No patients ran out of vascular access. 10 patients (44%) achieved enteral adaptation at a mean age of 25.3 months. PNAC occurred in 17 (73%) patients, with 9 (39%) being referred for transplant assessment. Overall mortality was 56%. Significant predictors for outcome in the SBS group included residual bowel <40 cm for survival (28% v 82%) and removal of ICV for enteral adaptation (12.5% v 50%)

Conclusions: Survival for intestinal failure was only just above 50%. We report a high incidence of sepsis and PNAC. These results reflect changing trends in intestinal failure, with more aggressive surgical approach to patients whom may previously not had long term treatment offered. High sepsis rate may reflect a more accurate assessment of central line problems. Large supra-regional units with highly specialised care are needed to successfully manage paediatric patients with intestinal failure. In addition, standardisation of care with national guidelines and clinically managed networks may help to improve long term outcome.


A. Wolff1, S. Hollingsworth2, C. Crawford2, W. P. Whitehouse3.1Children’s Centre, Nottingham, UK; 2Broxtowe & Hucknall PCT, Nottingham, UK; 3University of Nottingham, Nottingham, UK

Introduction: The ACT care pathway suggests all children in the end phase of a life limiting condition should have a personal resuscitation plan (PRP) as part of their end of life plan. A standard PRP form is used locally and copied to families and appropriate professionals.

Aims: To audit the use of the recently developed PRPs in a population of children with life limiting conditions and neurodisabilities.

Methods: The community children’s nursing team identified all children on their case load at the end stage of a life limiting conditions/having life threatening events. This team serves children with neurodisabilites and nursing needs in a population of 600 000 (150 000 children). All PRPs were reviewed by one author.

Results: Fifteen children (5 female) had severe CP (6), neuro-degenerative disease (9), with median age 10 years (range 1.3–18.5). 6/15 had PRPs, for the past median time 9 months (range 1–21). Two plans had changed significantly following a change in each child’s medical condition. The level of support agreed with families was: suction/oxygen for comfort only (2); basic life support including mouth to mouth or bag and mask ventilation (2); full cardiopulmonary resuscitation including intubation, cardiac compressions, and advanced life support (2). Four children also had rescue anticonvulsant regimes. All the plans included ambulance to the local Emergency Department if symptoms were not controlled in the community. The medical advisor for the local ambulance control reproduced the PRPs on ambulance service headed note paper. The parents/guardians feelings when developing the PRPs was recorded: “it was very upsetting, but glad it was done” (3); “it was ok, did not mind” (3). Nurses wanted all 15 to have PRPs but the lead paediatricians had to decide when and how to raise the issue with families. In addition, 2 children with PRPs died recently: 1 family choosing hospital, the other home for their child’s last illness.

Conclusions: The PRPs are flexible and acceptable when offered to families. Not all eligible families are currently being offered a discussion about PRPs. Further audit of their application, usefulness and acceptability is under way.


V. Larcher.Great Ormond Street Hospital NHS Trust, London, UK

Aims: To report on the first 5 months of an innovative consultant-led clinical ethics support service with the objectives of providing case review, staff support and training, input to policy development and support for clinical ethics committee.

Methods: Mapping of other services providing staff and parental support. Case recording using UK Clinical Ethics Network protocol. Personal feedback.

Results: Mapping identified eight other services with potential involvement including chaplaincy, clinical governance, family support, legal, mediation, and patient advocacy. Liaison was established with all to clarify roles. Fourteen (14) case reviews involving 16 children (aged 2 weeks–12 years) were held in response to requests by clinicians. Of these six were by case consultation group, four by face-to-face individual meeting, two by bedside, and two by full clinical ethics committee. Median duration was 1 h (range 0.5–1.67 h); in six reviews >1 meetings were held. Multidisciplinary teams were involved in 12 and parents directly in three, one subsidiary meeting was initiated by parents. Primary ethical issues identified were determination of best interests (8), withholding withdrawing treatment (4), confidentiality (1), and consent (1). Multiple secondary ethical issues arose in all discussions and comprised communication (11), withholding/withdrawing (7), best interests (7), exposure of Trust to risk (7), consent (5), and confidentiality (3). Outcomes relating to discussions were decisions to institute/provide palliative care in 7, active treatment in 5, no investigation in 1, and legal intervention in 1. Reviews were documented in case notes in 13 and CEC records in 3. All reviews included teaching and training, supported by regular seminars/facilitated discussions for six specialist units. Informal evaluations have been positive in terms of understanding of clinical issues, relevance, and content of ethical review, but some requested a more prescriptive approach.

Conclusions: An individually led clinical ethics support services can provide a useful adjunct to a clinical ethics committee and other services where demand for ethical review is high, especially in relation to training. Robust instruments need to be developed to enable a comparative evaluation of the service to be undertaken.


S. Robertson1, A. Hunt1, A. Thompson2.1RCN Institute, Oxford, UK; 2UCLAN, Preston, UK

The paediatric pain profile is a 20-item behaviour rating scale designed to assess pain in children with severe neurological impairments who are unable to self-report their pain. A study is in process to implement the paediatric pain profile as a parent-held document to assess usefulness, feasibility, and acceptability for parents and professionals.

Aims: Prior to implementation of the paediatric pain profile, a regionally based pre-test survey was conducted to explore the extent to which parents report pain as a problem for children, and the effect pain has on the lives of children and parents.

Methods: A questionnaire was distributed to the parents of 180 children with severe to profound neurological impairments.

Results: Up to the present time, responses have been received from 47 parents. Thirty one (67%) parents reported that their child had at least one pain. Twenty five (53%) described two pains, and thirteen (27%) three pains. Similar to previous studies, the most commonly described sources of pain were muscle spasms, abdominal discomfort (constipation, wind, and reflux), and headache. Current medication worked well for most children; however, it was unsatisfactory for 15%. Twenty seven parents (57%) reported that their child’s pain caused them a lot of stress or worry and difficulty in sleeping. Twelve (25%) parents reported that their child’s pain often or always interfered with the child’s enjoyment of family activities. Eleven (24%) children were reported to have pain every day or almost every day of the last four weeks and pain in 12 (25%) was reported to be severe or very severe.

Conclusions: This work highlights the problem of pain for this group of children and the impact of pain on them and their parents. Pain is a cause of worry and concern for a significant proportion of families. Approximately 20% of children appear to have a major pain problem. We will assess whether the use of the paediatric pain profile can assist in reducing the impact of pain on this population of children.


F. Craig, M. Peters, D. Rajapakse, A. K. Anderson.Great Ormond Street Hospital For Children, London, UK

Aim: The aim of this study was to determine if a palliative care service would be utilised by paediatric intensive care units (PICUs) and to see whether PICUs would use this service to support end-of-life care or for longer-term management of life-limited children.

Method: A member of the tertiary centre palliative care team attended the PICU ward round weekly over a 3 year period. No recommendations were made as to which patients would be appropriate referrals to the service. After 3 years case notes were reviewed retrospectively to determine if use of the service had increased and if the proportion of children referred for end-of-life care (identified as those who died within 2 weeks of referral) had changed. Children previously known to the palliative care team were excluded.

Results: The number of PICU patients referred to the palliative care service increased annually from 1 in the year before ward round attendance to 24 by the third year of attendance. In total, 58 children were referred. Thirty seven of the children died, 11 continue to receive palliative care support, and 10 have been discharged from active palliative care. The proportion of patients referred for end-of-life care increased from 26% in the first year to 58% in the third year. Only one child was specifically referred for support with symptom management. The proportion of children referred who received end-of-life care on the PICU decreased from 100% in the first year to 35% in the third year. Children who left the PICU either went to a hospice or their local hospital, although two families had wanted to go home. The main reason for leaving PICU was to be closer to home.

Conclusions: The PICU has increasingly utilised the palliative care service since its introduction. A role for palliative care is emerging in supporting end-of-life care of PICU patients and, in particular, in supporting care outside the PICU.


A. Anderson, F. Craig, S. Skellet, P. Lister.1Great Ormond St Hospital, London, UK

Aim: To determine if transfer of ventilated children out of the paediatric intensive care unit (PICU) for terminal extubation is a viable service for children and their families.

Method: We performed a retrospective review of children who were transferred out of the PICU to their home or a hospice, for terminal extubation. We also review the relevant literature.

Results: Three families requested for terminal extubation to occur outside of the PICU. One family chose to be at home and two families chose to go to a hospice local to their homes. Neither family had prior experience of the hospice. All children were transferred with a PICU nurse but not a PICU doctor. All families agreed prior to transfer that if accidental extubation occurred on route they would continue on to their final destination without reintubation. Non-essential medication was discontinued prior to leaving PICU and essential medication where possible was converted subcutaneously. The need for ongoing symptom control medication was anticipated; this was prescribed and dispensed prior to transfer. Local hospice and community teams were involved as soon as discharge was considered. Several practical issues were identified including access, appropriateness, and availability of equipment and community support. On extubation, one child died immediately and the other two children died after 30 min and 6 h, respectively. In all cases, satisfactory symptom management was achieved using the anticipated medication. On follow up, all families felt that discharge from PICU was the appropriate choice.

Conclusions: Transfer of ventilated dying children out of PICU is a viable service for children and families. Our aim is to offer all families facing terminal extubation of their child a choice in where this should happen.


L. Brook, J. Vickers.Royal Liverpool Children’s Hospital, Liverpool, UK

Background: Home is the preferred setting for end-of-life care for many children and their families but the majority of children with non-malignant life-limiting conditions continue to die in hospital.

Methods: We present a retrospective review of all children referred to the team who died in the period August 2003 to July 2005 in order to evaluate whether rapid discharge home can facilitate end-of-life care in the setting of choice.

Results: Seventy deaths were identified (median age 11 years). Thirty three children (47%) had malignancy, the majority whom (82%) died at home. Forty six per cent of non-oncology patients died at home. Eight children died in children’s hospice. Seventeen children were considered for rapid discharge for end of life care. Four of these children had malignancy. For the majority of children (82%) the preferred place for end-of-life care was home. All children were successfully transferred from hospital to their planned place of care except one 2 year old with congenital heart disease who was not transferred to children’s hospice as planned, because of uncertainty around prognosis. Nine transfers were intubated during transfer and extubated at home. Eight children died within 24 h of transfer, but 4 children survived greater than 2 weeks despite an expectation of death within 24 h at the time of transfer. All patients had symptoms effectively managed at their preferred place of care.

Conclusion: Effective end-of-life care in the setting of choice can be achieved by rapid planned discharge from hospital for end of life care.


D. Rajapakse, F. Craig.Great Ormond Street Hospital, London, UK

Aims: To determine the ethnic and religious backgrounds of children referred to a tertiary paediatric palliative care team, and to identify differences in the involvement of paediatric palliative care services according to ethnicity and religion.

Method: A retrospective review of the hospital database and case records was carried out for all referrals to a tertiary paediatric palliative care team between 1 April 2004 and 1 April 2005. The referrals were categorised according to ethnic background (white British/black and minority ethnic), religion (Christian/Muslim/none/other), and language spoken (English/non-English). For each category, place of death, contact with the team after death, attendance at the funeral by a team member, and whether bereavement follow-up was led by a team member were recorded.

Results: There were 89 referrals (43 white British; 43 black and minority ethnic; 3 not recorded). 85% of the white British group had contact with the team after death compared with 68% in the black and minority ethnic group. In 50% of the white British group the funeral was attended by a team member compared with 32% in the black and minority ethnic group. In 35% of the white British group bereavement follow-up was by a team member compared with 32% in the black and minority ethnic group. In the white British group 19% died in a hospice compared with 12% in the black and minority ethnic group. Of the 89 referrals, 37 were Christian, 21 were Muslim, 23 were not recorded, 5 had no religion, and 3 were of other religions. 83% of Christians who died had contact with the team compared with 60% of Muslims. 80% of funerals in the Christian group were attended by the team compared with 33% in the Muslim group. Of the 8 deaths which occurred in a hospice, 75% were Christian children and none were Muslim. Of the 89 referrals, 69 spoke English and only 14 did not (not recorded in 6). In the English speaking group 40% of funerals were attended, compared with none in the non-English speaking group, and 36% had team led bereavement follow-up compared with none in the non-English speaking group.

Conclusions: A wide range of ethnic groups and religions were represented in the study population. White British, Christian, and English-speaking families appeared to have greater involvement with tertiary paediatric palliative care services after death than black and minority ethnic, Muslim, and non-English speaking families. Christian families were more likely to use hospices for end-of-life care.


L. Roe1, J. Marston2, L. Cuddeford3.1University of Birmingham Medical School, Birmingham, UK; 2St Nicholas Hospice, Bloemfontein, South Africa; 3South Birmingham Primary Care Trust, Birmingham, UK

The following information was gathered during a medical student elective in South Africa. We aim to describe the care offered to whom and the means by which this is implemented (buildings, staff, resources). St Nicholas’ is one of only four children’s hospices in South Africa caring for approximately 600 children, 90% of whom are HIV positive. It aims to provide paediatric palliative care through the provision of four day centres, a home care service and an inpatient unit. The four day care centres run 5 days a week, looking after 30 pre-school children from 10am until 4pm. All day care centres are staffed by a teacher and a healthcare worker and at one there is also a cook. The main aims of these centres are to ensure that the children get access to two substantial nutritious meals a day and to offer respite to the parents/carers of the children who are themselves often ill. The facilities at the day care centres are minimal, consisting of one room, with tables and chairs, a toilet (in one this was an outside portable toilet) and a small kitchen with sink and cooker. The home care team consists of a registered assistant nurse, three community care workers, and six volunteers. They care for over 400 children and their families. The care team visit the children in their homes. Stable children with no symptoms usually get a visit once a month, the number of visits increasing if the child is unwell. The inpatient unit—Sunflower House is a converted house, in the grounds of the National Hospital, with four bedrooms, kitchen, lounge, and garden. When children arrive they are fully assessed, often in casualty by a doctor. If it is judged that hospital admission is not necessary then the child is admitted for hospice care. Following discharge from hospital children are often admitted for a couple of weeks to give them the opportunity to recuperate. Nutritional support is often the single biggest method of improving health in these children, many of whom are severely malnourished when they arrive. All children are commenced on vitamin A and multivitamin drops when they arrive—there is some evidence that these can reduce mortality and morbidity in children with HIV. The use of retroviral therapy remains minimal.

Conclusion: The ethos of paediatric palliative care can be applied universally but the needs of the children and families are very different. Approach and management of care is influenced by resources available.


J. Dwyer1, L. Maynard1, D. Vickers2.1East Anglia’s Children’s Hospices, Cambridge, UK; 2South Cambridgeshire PCT, Cambridge, UK

Aims: Care of children and families should be holistic, meeting the needs of the individual and family. This paper presents a psycho-social family support model developed by a children’s hospice service and an evaluation of it after 3 years’ operation. The model aims to provide support from acceptance for care until up to 3 years’ after the death of the child, employing a specialist multi-professional team. Support is needs-based, as requested by the family and provided in a range of therapeutic interventions. The approach is flexible but consistent, operating within the wider network of support services.

Methods: Evaluation was multifaceted and examined: (1) service structure including management, staff support, training needs, and geographical working; (2) an audit of family records to measure the effectiveness of service delivery; (3) user feedback on what was valued and how it could be improved; and (4) peer evaluation across the UK of the model and best practice guidelines.

Results: The service provided management that ensured the holistic approach to care was maintained at delivery and in planning for services. Staff had structured supervision which enabled practice development and supported their well being. Care was delivered effectively by geographical teams. In 95% of contacts there was evidence that clear objectives had been set. In 90% of the sample the outcomes met the objectives of the intervention. Fathers and life limited children were under represented in work undertaken. User feedback showed the service was valued for its flexibility, yet it was wanted at diagnosis or the earliest opportunity. Support for siblings was particularly valued and both individual and group bereavement sessions were felt beneficial. Families wanted more information about available support, more local groups, and more support for fathers and adult siblings. Peer evaluation considered best practice guidelines to be clear, concise, workable, and relevant. All stated there were elements of the model that would be of benefit to their organisation. Concerns were raised about the need for specialist staff and with ending bereavement care after 3 years.

Conclusion: Psychosocial support as one component of paediatric palliative care is valued and seen as beneficial by families. While all those concerned with the provision of palliative care will have some expertise in psychosocial support, there should be a higher level of skills available from specialist staff who can provide consistent care during the child’s life and into bereavement.


D. Curson1, L. Cuddeford2.1Birmingham Children‘s Hospital, Birmingham, UK; 2South Birmingham Primary Care Trust, Birmingham, UK

Aims: To evaluate referrer and parental satisfaction of a newly established multidisciplinary team offering a community paediatric palliative care service to children with life limited illnesses and their families.

Method: A cross sectional survey was used to obtain feedback and satisfaction from referrers and parents of children referred to the service. A repeat postal survey was used to obtain feedback from parents one year later. Referrers were sent a satisfaction questionnaire 18 months after the launch of the service.

Results:Parental survey: there was a 30% response rate to the postal survey. The majority of respondents found it easy/very easy to access help. The most helpful aspects of care were reported to be the provision of aids and advice and emotional support. The provision of written information was reported to be the least helpful. Responses regarding parental satisfaction with the service were positive. Those families who responded reported that the service had made a difference to the quality of life of the child and family. Despite this, one third of the respondents reported that the team had not enhanced their child’s ability to cope with their illness. Referrer survey: there was a 47% response rate to the postal survey. More than 90% of respondents were satisfied with both the referral process and communication with the team. The impact of the service was felt most positively in improving services for families and improved support for families. The service had least impact on management of physical symptoms. 77% of respondents felt the team complemented the work of other professionals and the majority felt that the team coordinated the service well. An opportunity for individual comments regarding areas for improvement could be divided into those around communication and also strategic development.

Conclusion: Overall, parents and referrers appear to be satisfied with the new service. Satisfaction with the service was consistent one year later and was positive across a number of areas of support. The evaluation demonstrates that a dedicated multidisciplinary team does enhance care of children and their family with life limited illness. Consideration needs to be made to ensure that the child’s needs are met in addition to those of the family and that services are responsive to the changing needs of the child and family.