Background/objectives The role of palliative care in the support of patients with neuromuscular disorders (NMDs) is generally recognised in spite of the scarcity of condition-specific evidence in the literature. Methods We have focussed specifically on palliative and end-of-life care for patients whose neuromuscular disease has an impact on their respiratory function. Reviewing the literature, we have examined where existing palliative care knowledge can be applied to the specific challenges faced by patients with NMDs, identifying where lessons learnt during the management of one condition may need to be judiciously applied to others. Results We highlight lessons for clinical practice centring on six themes: management of complex symptoms; crisis support; relief of caregiver strain; coordination of care; advance care planning; and end of life care. Conclusions The principles of palliative care are well suited to addressing the complex needs of patients with NMDs and should be considered early in the course of illness rather than limited to care at the end of life. Embedding relationships with specialist palliative care services as part of the wider neuromuscular multidisciplinary team can facilitate staff education and ensure timely referral when more complex palliative care problems arise.
Results 12 months after initiation of the new integrated service, the proportion of patients with GC and RCC reviewed by PC at diagnosis of incurable disease had increased from 26% and 16% to 80% and 93% respectively. 79% (RCC) and 72% (GC) had severe or overwhelming psychosocial needs. 18% (RCC) and 25% (GC) had severe or overwhelming physical needs.47 patients had died at time of analysis (16 RCC and 31 GC). Median time from review to death was 134 days (range 20-318 days). This compares to a median time between PC referral and death in the baseline cohort of 98 days (GC) and 83.5 days (RCC). Conclusions The Integrated service proactively identifies patients with PC needs earlier and has highlighted the high burden of psychosocial needs. This study will underpin service development and improvement to include proactive intervention. Background Availability of anticipatory medications for common end of life (EOL) symptoms is a quality indicator measured in recent hospital care of the dying audits. Local results from the 2013 audit demonstrated poor uptake of anticipatory prescribing. In 2014, the Trust moved to electronic patient records and prescribing across the acute trust. Working in partnership with the informatics leads for pharmacy and medicine,the palliative care team utilised the capabilities of 'Cerner's' electronic patient prescribing system to develop an 'orderset' of 5 medications, commonly needed at the end of life. The system went live in May 2015 and an early induction session to the new junior doctors was delivered in August 2015. Aims To evaluate prescribing of anticipatory 'as required' EOL medications, following the introduction of the palliative care 'order-set'. Methods A retrospective review of anticipatory, 'as required', prescribing for a 1 month period was undertaken 12 months after introducing the prescribing 'order-set'. Criteria applied as for the 2013 National Hospital audit. 132Results were compared with local results from 2013. Baseline information from 2013 showed that the Trust under-performed for prescribing for all symptoms: (Agitation-23%, Breathlessness-20%, Nausea-14%, Pain-27%, and Secretions-7%).Twelve months after implementation of the 'order-set' the results were: (Agitation-68%, Breathlessness-74%, Nausea-68%, Pain-74%, and Secretions-65%). These results are all above the national average from the 2016 RCP: National End of life care audit. Conclusions Introduction of an electronic palliative care prescribing 'order-set' for anticipatory EOL medications, has demonstrated considerable improvement in the uptake of anticipatory prescribing for dying patients. This in conjunction with an early palliative care induction education session for junior doctors has demonstrated significant improvements in the quality of prescribing in the end of life phase of life for patients in an acute hospital. Approximately 900,000 people in the UK have heart failure (HF) with 30-40% dying within a year. The incidence of HF is increasing. Patients have a high symptom burden; patients with H...
There are many eligible UK donors (50% of hospice deaths) and the British public are largely in favour of donation. However, most hospice staff are unaware or unwilling to raise the topic of cornea donation (CD). Fear of causing distress is known to be a factor. We conducted a service evaluation to explore the responses of patients offered CD. Method The study was at an 8-bedded UK hospice. Previously, no hospice patients had donated their corneas. Staff education was undertaken first. For the study period (six weeks) all patients admitted were screened for CD eligibility. Those eligible were offered information, at an appropriate time. Exclusion criteria were being unable to engage in conversation, or distress during other discussions about dying. All patients were given anonymous questionnaires afterwards.Data regarding the number of patient donating was also collected.Results 15 of 29 inpatients were eligible for CD, and offered information. 11 questionnaires were returned. Patients were asked 'How did you feel about being informed?' 55% were 'glad '45% had 'no strong feelings either way '(None 'didn't like it'.) They were also asked 'Was it upsetting to be informed?' 73% said 'No'?; 27% said 'Yes, but I'd still rather have had the conversation '(None said 'Yes, and I didn't like talking about it.') Of 15 patients offered information, 6 went on to donate. Background A new electronic whiteboard multi-professional handover (e-handover) was introduced to the in-patient unit.Handover is an excellent opportunity to share information, but is a potential source for errors, if not utilised correctly. There was no standard operating procedure (SOP) for the new e-handover, one was developed to ensure accuracy, a consistent approach and that addressed patients' specific palliative care needs.Methods The e-handover was audited by two independent doctors against standards developed by The Academy of Medical Colleges, local nursing guidelines and against palliative care outcome measures. A multi-professional group of palliative care specialists including doctors, nurses, and allied health professionals then developed a SOP. The handover was then re-audited following its institution with staff training.Results In March 2017, 16 patients' notes and e-handover summaries were audited. One hundred percent of patients had an accurate primary diagnosis on their handover, although documented in a variety of different places. Thirty three percent had a documented preferred place of death (PPD), 56% had documented escalation status (ES), 50% had phase of illness (PoI) and 0% had modified Australian Karnofsky performance status (AKPS) documented on the e-handover. Sixtynine percent of handovers were easy to read and 55% used trust approved acronyms. Following the SOP introduction, the second audit was performed in September 2017. One hundred percent had the primary diagnosis documented and all in the correct place. PPD was documented in 100% of patients. One hundred percent of patients had a documented ES, AKPS and PoI; however this ...
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.