3 Is it acceptable to use technical monitoring to assess palliative care patients’ level of consciousness? a qualitative exploration with patients and relatives

2018 ◽  
Vol 8 (3) ◽  
pp. 360.3-361
Author(s):  
Anna-Maria Krooupa ◽  
Paddy Stone ◽  
Stephen McKeever ◽  
Bella Vivat

IntroductionBispectral Index (BIS) monitoring uses electroencephalographic data to objectively measure patients’ level of consciousness and might be a useful supplement to clinical observation when using sedative medication in palliative care. However its acceptability to UK palliative care service users is unknown.AimTo explore the acceptability of BIS technology with UK hospice patients and relatives.MethodsWe conducted focus groups and individual interviews with patients and relatives in a UK hospice and analysed data thematically.Results10 patients and 15 relatives participated in seven focus groups and three interviews. Responses from patient participants were similar to those from relatives and four themes emerged:Knowledge and experience of current monitoring of sedation/consciousnessAcceptable duration of monitoringReservations about using technological devices in palliative carePotential benefits of using BIS.Participants’ comments on potential benefits included that BIS alongside routine clinical practice might help ensure comfort at the end of life and serve to assure medical needs are being met particularly for people who cannot communicate. Participants generally felt that the duration of BIS monitoring should be informed by each patient’s individual needs while some expressed that patients and/or families should be consulted before using the monitor. Participants also noted that BIS while possibly obtrusive is not invasive.ConclusionsOur participants considered BIS acceptable for monitoring level of consciousness and possibly helpful at the end of life. We therefore initiated an observational study exploring use of this technology in the clinical care of UK hospice inpatients.

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert

Abstract   NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the final admission in acute and community hospitals in England and Wales. Mental health inpatient providers participated in the first round but excluded from the second round. NACEL round two, undertaken during 2019/20, comprised: Data was collected between June and October 2019. 175 trusts in England and 8 Welsh organisations took part in at least one element of NACEL (97% of eligible organisations). Key findings include Recognising the possibility of imminent death: The possibility that the patient may die was documented in 88% of cases. The median time from recognition of dying to death was 41 hours (36 hours in the first round). Individual plan of care: 71% of patients, where it had been recognised that the patient was dying (Category 1 deaths), had an individualised end of life care plan. Of the patients who did not have an individualised plan of care, in 45% of these cases, the time from recognition of dying to death was more than 24 hours. Families’ and others’ experience of care: 80% of Quality Survey respondents rated the quality of care delivered to the patient as outstanding/excellent/good and 75% rated the care provided to families/others as outstanding/excellent/good. However, one-fifth of responses reported that the families’/others’ needs were not asked about. Individual plan of care: 80% of Quality Survey respondents believed that hospital was the “right” place to die; however, 20% reported there was a lack of peace and privacy. Workforce Most hospitals (99%) have access to a specialist palliative care service. 36% of hospitals have a face-to-face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week. NACEL round three will start in 2021.


2021 ◽  
Vol 37 (S1) ◽  
pp. 17-17
Author(s):  
Amanda Lovato ◽  
Nisha Almeida

IntroductionAn important reason for receiving non-beneficial treatment at end-of life is the lack of timely discussions on goals of care and end-of-life preferences. A recent randomized clinical trial demonstrated that patients primed with a questionnaire on their end-of-life preferences were more likely to initiate such conversations with their doctors. Our objective is to integrate the questionnaire into a smartphone application to facilitate early goals of care discussions. To achieve this goal, we first plan to undertake a feasibility study to understand stakeholder preferences.MethodsAs part of a quality improvement initiative at our Canadian quaternary-care hospital, we conducted focus groups with oncology and palliative care physicians and patients to understand barriers to early conversations on end-of-life preferences, and to assess feasibility of using smartphone technology in facilitating these conversations. The app would integrate a questionnaire to patients and send prompts to physicians on patient readiness and timing of conversations.ResultsWe conducted separate focus groups with lung cancer patients (n = 6) and clinicians in oncology (n = 6) and palliative care (n = 6). Clinical teams expressed enthusiasm about early conversations but raised several barriers including system (lack of electronic documentation and access to data; multiple physicians), clinician (lack of time) and patient (stigma associated with end-of-life) barriers. Clinicians agreed that an app could overcome some of these barriers such as access to patient and electronic data by making patients the repository of all their data and empowering them to initiate discussions. However, they raised concerns about universal accessibility of such technology, especially among the elderly. Patient focus groups will take place in March 2021 and inform us on feasibility in this population.ConclusionsThere is a consensus among physicians at our hospital that early end-of-life conversations have the potential to mitigate adverse events and that use of a smart phone app could facilitate such conversations.


2018 ◽  
Vol 8 (3) ◽  
pp. 370.1-370 ◽  
Author(s):  
Ishrat Islam ◽  
Anthony Byrne ◽  
Annmarie Nelson

IntroductionA major challenge in developing new models of palliative care is to identify the current needs of the public patients and carer (Dixon 2015). There is a lack of evidence on people’s attitudes towards end of life care (EoLC) in Wales.AimTo increase understanding of people’s feelings views knowledge and preferences around EoLC.MethodAn online survey was conducted using an electronic survey tool. Descriptive statistics and thematic analysis were used to perform data analysis.Results2210 people (Age: Mean +SD; 55+14 years) participated in the survey 43% of those were members of the general public 29% were patients/carers and 23% were health professionals. 49% of respondents thought that available palliative care was inadequate and 92% believed that end of life care for dying people should have equal priority for the NHS. 95% of respondents thought that expressing preferences around EoLC in advance was important but only 13% had done this in practice and 60% did not know how to plan their EoLC. However the top three needs in EoLC were identified as having a trained carer (84%) access to other professionals (59%) and emergency care (44%). The top three preferences for EoLC were being surrounded by loved ones (62%) maintaining dignity (55%) and a feeling of peace (40%). Just 24% respondents would chose to be at home while receiving EoLC.ConclusionsUnderstanding public attitudes is essential to understanding changing contexts of care. Developing a need-based palliative care model enhances an effective service delivery.Reference. Dixon J, et al. Equity in the provision of palliative care in the UK: Review of evidence2015;pg. 1–145. London: Personal Social Services Research Unit. Available at: https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report-full-lse.pdf


2018 ◽  
Vol 8 (3) ◽  
pp. 363.3-364
Author(s):  
Hannah Costelloe ◽  
Alice Copley ◽  
Andrew Greenhalgh ◽  
Andrew Foster ◽  
Pratik Solanki

Evidence demonstrates that medical students have limited experience in developing ‘higher-order communication skills’ (Kaufman et al. 2000). Anecdotally many do not feel confident in their ability to conduct difficult conversations often due to a lack of exposure to such scenarios in practice or a pervasive notion that these scenarios are inappropriate for students and beyond the scope of a junior doctor’s role and thus not a focus of curriculums (Noble et al. 2007). There is however a correlation between level of clinical experience and improved confidence for medical students (Morgan and Cleave-Hogg 2002).We surveyed a group of final year medical students to assess their confidence using a 10-point Likert scale in tackling common palliative and end of life care scenarios. Our intervention comprised a study day of 10 practical small-group teaching simulation and OSCE-style stations designed to provide exposure to common experiences in a controlled setting. We reassessed the confidence of students after delivery and objectively explored the impact of the day by asking participants to complete a validated assessment before and after the course. All results showed significant improvement on t-testing: confidence in end of life communication in an OSCE setting improved by 42.2% and assessment marks improved by 24.7% (p=0.039).Palliative care is an area in which students approaching the end of undergraduate training feel underprepared. Our findings demonstrate that small group sessions improve confidence by facilitating communication practice in a controlled environment and providing crucial exposure to common palliative care scenarios they will face as doctors.References. Kaufman D, Laidlaw T, Macleod H. Communication skills in medical school: Exposure confidence and performance. Academic Medicine [online] 2000;75(10):S90–S92. Available at https://journals.lww.com/academicmedicine/Fulltext/2000/10001/Communication_Skills_in_Medical_School__Exposure.29.aspx [Accessed: 30 May 2018]. Morgan P, Cleave-Hogg D. Comparison between medical students’ experience confidence and competence. Medical Education [online] 2002;36(6):534–539. Available at https://doi.org/10.1046/j.1365-2923.2002.01228.x [Accessed: 30 May 2018]. Noble L, Kubacki A, Martin J, Lloyd M. The effect of professional skills training on patient-centredness and confidence in communicating with patients. Medical Education [online] 2007;41(5):432–440. Available at https://doi.org/10.1111/j.1365-2929.2007.02704.x [Accessed: 30 May 2018]


2008 ◽  
Vol 26 (10) ◽  
pp. 1717-1723 ◽  
Author(s):  
Joanne Wolfe ◽  
Jim F. Hammel ◽  
Kelly E. Edwards ◽  
Janet Duncan ◽  
Michael Comeau ◽  
...  

Purpose In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life. Methods Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort). Results In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002). Conclusion Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.


2017 ◽  
Vol 32 (1) ◽  
pp. 36-45 ◽  
Author(s):  
Caroline Shulman ◽  
Briony F Hudson ◽  
Joseph Low ◽  
Nigel Hewett ◽  
Julian Daley ◽  
...  

Background: Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. Aim: To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. Design: Thematic analysis of data collected using focus groups and interviews. Participants: Single homeless people ( n = 28), formerly homeless people ( n = 10), health- and social-care providers ( n = 48), hostel staff ( n = 30) and outreach staff ( n = 10). Results: This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues. Conclusion: Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.


2013 ◽  
Vol 67 (1-2) ◽  
pp. 43-51 ◽  
Author(s):  
Donnelle Daly ◽  
Stephen Chavez Matzel

A transdisciplinary team is an essential component of palliative and end-of-life care. This article will demonstrate how to develop a transdisciplinary approach to palliative care, incorporating nursing, social work, spiritual care, and pharmacy in an acute care setting. Objectives included: identifying transdisciplinary roles contributing to care in the acute care setting; defining the palliative care model and mission; identifying patient/ family and institutional needs; and developing palliative care tools. Methods included a needs assessment and the development of assessment tools, an education program, community resources, and a patient satisfaction survey. After 1 year of implementation, the transdisciplinary palliative care team consisted of seven palliative care physicians, two social workers, two chaplains, a pharmacist, and End-of-Life Nursing Consortium (ELNEC) trained nurses. Palomar Health now has a palliative care service with a consistent process for transdisciplinary communication and intervention for adult critical care patients with advanced, chronic illness.


2011 ◽  
Vol 29 (15_suppl) ◽  
pp. 9135-9135
Author(s):  
W. Gonsalves ◽  
T. Tashi ◽  
T. Davies ◽  
S. Ortman ◽  
R. Thota ◽  
...  

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 83-83
Author(s):  
Rebecca M. Prince ◽  
Shuyin Liang ◽  
Mantaj Brar ◽  
Stephanie Ramkumar ◽  
Adena Scheer ◽  
...  

83 Background: Increasing recognition that high-quality end of life care is essential has resulted in internationally endorsed metrics allowing assessment of interventions at the end of life. Median survival for mCRC patients has improved to more than 24 months resulting in increased opportunity to undergo interventions for symptom relief at the end of life. We explored patterns of palliative interventions (chemotherapy, radiotherapy, surgery, endoscopy, drainage procedures) and outcomes in mCRC patients. Methods: A retrospective review was undertaken of all mCRC patients referred to the palliative care service from 2000 to 2010 at a tertiary cancer center in Toronto, Canada. Descriptive statistics, survival analysis and regression were employed. Results: A total of 542 patients were included of whom 52.8% were male, mean age was 62.8 years and 44.6% had stage 4 disease at diagnosis. Over the course of their disease 93.9% had an intervention at any time after their diagnosis including 27.5% of patients undergoing palliative surgery, 77% of patients had an intervention in the last year of life and 19.1% had an intervention in the last 30 days of life. The percentage of patients receiving interventions within the last 14 days of life were 1.23% for chemotherapy, 4.6% for radiotherapy, 0.5% for surgery, 10.4% for endoscopy and 23% drainage procedures. The mean time between referral to palliative care and death was 7 months (SD 10.4). For patients who received chemotherapy, the mean time between last chemotherapy and death was 9.5 months (SD 14.9). Overall survival for patients who did not receive chemotherapy was 28 months (SD 33) compared with 40 months (SD 32) for those who received chemotherapy. Regression analysis for risks of dying within 30 days of chemotherapy was limited by a low event rate. Increasing age was significantly associated with a lower risk of dying within 30 days of chemotherapy. Conclusions: In their final months of life, palliative mCRC patients undergo a significant number of interventions aiming to improve quality of life. These require considerable multi-disciplinary input with ramifications for quality care, planning for service provision and funding.


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