ABSTRACT
AimsThe last 30 years has seen a rising recognition of the idea that ‘children have a right to be heard’ and that young people have the right to participate in decisions affecting their lives and healthcare. These are key principles that have become engrained into paediatric training and practice. During the Covid-19 pandemic, non-emergency clinical consultations were transitioned to remote telephone appointments to try and mitigate transmission of the virus. However, telephone consultations provide an added physical barrier that may impede engaging with the young person effectively.The following standards were agreed for the audit:1. All children/young people should be directly spoken to. (Target: 100%)2. The wishes and feelings of all young people should be recorded. (Target: 100%)3. All children should be involved with making future plans. (Target: 100%)Primary aim of this study was to compare adherence to the above standards.MethodsAn audit was carried out of community paediatric electronic records and clinic letters of all telephone appointments, for young people aged 10-18 years, between 1/6/2020 and 30/6/2020 (during the second national lockdown). A direct comparison was made with young people seen in face-to-face appointments between 1/1/2022 and 31/1/2022. Exclusion criteria were for children attending special needs schools.ResultsA total of 125 children were included in the audit (88 telephone consultations and 37 face-to-face consultations). In June 2020 a total of 35/88 children (39.8%) were directly spoken to, and of these young people 32/35 (91.4%) were involved with future plan-making and their views were clearly recorded. This is directly comparable to the January 2022 cohort where, 28/37 children (75.7%) were directly spoken to, and all of those children had their views clearly recorded and were involved with future plan-making. In almost 80% of the records, where the child was not directly spoken to, the reason for this was not clearly documented (figure 1).ConclusionWe failed to meet the standard outlined in both the face to face and telephone clinic group (75.7% and 39.8%). Capturing the child’s voice was significantly lower in the telephone clinic group. Where the child was spoken to, their views were captured in over 90% of the consultations. We believe this audit is a reflection of poor record keeping as opposed to a culture not involving the young person in their health decisions.Telephone clinics are a barrier to capturing the voice of the child. This could be due to a combination of physical distance and poor documentation. We have since implemented a telephone appointment proforma which provides prompts for effectively capturing and documenting the voice of the child. We all agree with the importance of involving the child with their healthcare plans and advocating for a child is a key principle that underpins effective paediatric practice. It is important that we can capture this and document it effectively to ensure that we as paediatricians are providing best care for our patients.
ABSTRACT
Palliative care remains suboptimal in advanced cirrhosis, in part relating to a lack of evidence-based interventions. Ascites remains the most common cirrhosis complication resulting in hospitalisation. Many patients with refractory ascites are not candidates for liver transplantation or transjugular intrahepatic portosystemic shunt, and therefore, require recurrent palliative large volume paracentesis in hospital. We review the available evidence on use of palliative long-term abdominal drains in cirrhosis. Pending results of a national trial (REDUCe 2) and consistent with recently published national and American guidance, long-term abdominal drains cannot be regarded as standard of care in advanced cirrhosis. They should instead be considered only on a case-by-case basis, pending definitive evidence. This manuscript provides consensus to help standardise use of long-term abdominal drains in cirrhosis including patient selection and community management. Our ultimate aim remains to improve palliative care for this under researched and vulnerable cohort.
ABSTRACT
BACKGROUND: Patients hospitalised with COVID-19 have increased morbidity and mortality, which requires extensive involvement of specialist Hospital Palliative Care Teams. Evaluating the response to the surge in demand for effective symptom management can enhance provision of Palliative Care in this patient population. AIM: To characterise the symptom profile, symptom management requirements and outcomes of hospitalised COVID-19 positive patients referred for Palliative Care, and to contextualise Palliative Care demands from COVID-19 against a 'typical' caseload from 2019. DESIGN: Service evaluation based on a retrospective cohort review of patient records. SETTING/PARTICIPANTS: One large health board in Scotland. Demographic data, patient symptoms, drugs/doses for symptom control, and patient outcomes were captured for all COVID-19 positive patients referred to Hospital Palliative Care Teams between 30th March and 26th April 2020. RESULTS: Our COVID-19 cohort included 186 patients (46% of all referrals). Dyspnoea and agitation were the most prevalent symptoms (median 2 symptoms per patient). 75% of patients were prescribed continuous subcutaneous infusion for symptom control, which was effective in 78.6% of patients. Compared to a 'typical' caseload, the COVID-19 cohort were on caseload for less time (median 2 vs 5 days; p < 0.001) and had a higher death rate (80.6% vs 30.3%; p < 0.001). The COVID-19 cohort replaced 'typical' caseload; overall numbers of referrals were not increased. CONCLUSIONS: Hospitalised COVID-19 positive patients referred for Palliative Care may have a short prognosis, differ from 'typical' caseload, and predominantly suffer from dyspnoea and agitation. Such symptoms can be effectively controlled with standard doses of opioids and benzodiazepines.