Collateral Damage of the COVID-19 Pandemic: Isolation, Rapid Decision Making and Multifaceted Distress as Observed by an Inpatient Palliative Care Service

2021 ◽  
pp. 1-9
Author(s):  
Alissa A. Ulanday ◽  
Lindsay B. Minter
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Collateral Damage

scholarly journals An examination of the research priorities for a hospice service in New Zealand: A Delphi study

2015 ◽  
Vol 14 (3) ◽  
pp. 232-240 ◽  
Author(s):  
Kay de Vries ◽  
Jo Walton ◽  
Katherine Nelson ◽  
Rhondda Knox
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
New Zealand ◽  
Symptom Management ◽  
Care Service ◽  
Research Priorities ◽  
Palliative Care Service ◽  
Family Carers ◽  
Research Topics ◽  
Research Themes

AbstractObjectives:Palliative care research is relatively diverse and prioritizing research in this field is dependent on multiple factors such as complex ethical decisions in designing and conducting the research; access to participants who may be deemed “vulnerable” and an increasingly medically focused approach to care. The aim of this study was to inform organizational decision-making and policy development regarding future research priorities for a hospice service in New Zealand.Methods:A modified three-round Delphi technique was employed. Participants were drawn from one dedicated specialist palliative care service that delivers care in the community, day-care, hospice inpatient, aged residential care, and acute hospital palliative care service. A purposive sample included palliative care staff (n = 10, 18, 9, for rounds 1–3, respectively) volunteers (n = 10, 12, 11); and patients and family carers (n = 6, 8, for rounds 1 and 2). Patients and family carers were not involved in the third round.Results:At final ranking of six research themes encompassing 23 research topics were identified by staff and volunteers. These were: symptom management; aged care; education; community; patient and family; and bereavement support and young people. Patients and family carers agreed on four themes, made up of 10 research topics. These were: decision-making, bereavement and loss, symptom management; and recognition of need and response of service.Significance of results:The study generated a rich set of research themes and specific research topics. The perspectives of staff and volunteers are significantly different from those of patients and family members, in spite of the recognition by all concerned that palliative care services work within a philosophy of patient-centered care. Open discussion of ideas has the potential to engage both staff and patients and carers in quality improvement initiatives, and to reinforce the value of research for patient care.

scholarly journals Lay and professional stakeholder involvement in scoping palliative care issues: Methods used in seven European countries

2016 ◽  
Vol 31 (2) ◽  
pp. 181-192 ◽  
Author(s):  
Louise Brereton ◽  
Christine Ingleton ◽  
Clare Gardiner ◽  
Elizabeth Goyder ◽  
Kati Mozygemba ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Care Service ◽  
Stakeholder Involvement ◽  
Palliative Care Service ◽  
Health Technology ◽  
Local Context ◽  
Key Issues

Background: Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in palliative care research and health technology assessment requires development. Stakeholder involvement adds value throughout research (from prioritising topics to disseminating findings). Philosophies and understandings about the best ways to involve stakeholders in research differ internationally. Stakeholder involvement took place in seven countries (England, Germany, Italy, Lithuania, the Netherlands, Norway and Poland). Findings informed a project that developed concepts and methods for health technology assessment and applied these to evaluate models of palliative care service delivery. Aims: To report on stakeholder involvement in the INTEGRATE-HTA project and how issues identified informed project development. Design: Using stakeholder consultation or a qualitative research design, as appropriate locally, stakeholders in seven countries acted as ‘advisors’ to aid researchers’ decision making. Thematic analysis was used to identify key issues across countries. Setting/participants: A total of 132 stakeholders (82 professionals and 50 ‘lay’ people) aged ⩾18 participated in individual face-to-face or telephone interviews, consultation meetings or focus groups. Results: Different stakeholder involvement methods were used successfully to identify key issues in palliative care. A total of 23 issues common to three or more countries informed decisions about the intervention and comparator of interest, sub questions and specific assessments within the health technology assessment. Conclusion: Stakeholders, including patients and families undergoing palliative care, can inform project decision making using various involvement methods according to the local context. Researchers should consider local understandings about stakeholder involvement as views of appropriate and feasible methods vary. Methods for stakeholder involvement, especially consultation, need further development.

Patient-Centered Care and Autonomy: Shared Decision-Making in Practice and a Suggestion for Practical Application in the Critically Ill

2019 ◽  
Vol 35 (11) ◽  
pp. 1352-1355
Author(s):  
Marianna V. Mapes ◽  
Peter A. DePergola ◽  
William T. McGee
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Critically Ill ◽  
Care Service ◽  
Clinical Care ◽  
Patient Centered Care ◽  
Practical Application ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Centered Care

Decision-making for the hospitalized dying and critically ill is often characterized by an understanding of autonomy that leads to clinical care and outcomes that are antithetical to patients’ preferences around suffering and quality of life. A better understanding of autonomy will facilitate the ultimate goal of a patient-centered approach and ensure compassionate, high-quality care that respects our patients’ values. We reviewed the medical literature and our experiences through the ethics service, palliative care service, and critical care service of a large community teaching hospital. The cumulative experience of a senior intensivist was filtered through the lens of a medical ethicist and the palliative care team. The practical application of patient-centered care was discerned from these interactions. We determined that a clearer understanding of patient-centeredness would improve the experience and outcomes of care for our patients as well as our adherence to ethical practice. The practical applications of autonomy and patient-centered care were evaluated by the authors through clinical interactions on the wards to ascertain problems in understanding their meaning. Clarification of autonomy and patient-centeredness is provided using specific examples to enhance understanding and application of these principles in patient-centered care.

scholarly journals 77 National Audit of Care At the End of Life (NACEL)—Round Two Findings

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Plan ◽  
Specialist Palliative Care ◽  
Experience Of Care ◽  
Outcomes Of Care ◽  
Specialist Palliative Care Service ◽  
The Right

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.

scholarly journals The association between ethnicity, socioeconomic deprivation and receipt of hospital-based palliative care for people with Covid-19: A dual centre service evaluation

2021 ◽  
pp. 026921632110229
Author(s):  
Sabrina Bajwah ◽  
Polly Edmonds ◽  
Emel Yorganci ◽  
Rosemary Chester ◽  
Kirsty Russell ◽  
...  
Keyword(s):  
Palliative Care ◽  
Ethnic Minority ◽  
Primary Outcome ◽  
Minority Groups ◽  
Care Service ◽  
Palliative Care Service ◽  
Service Evaluation ◽  
Socioeconomic Deprivation ◽  
Black British ◽  
Multivariable Regression

Background: People from ethnic minority groups and deprived socioeconomic backgrounds have worse outcomes from COVID-19. Aim: To examine associations between ethnicity and deprivation with timing of palliative care referral for inpatients with COVID-19. Design: Service evaluation of consecutive patients with COVID-19 referred to palliative care. Sociodemographic (including age, sex, Index of Multiple Deprivation, ethnicity coded as White/non-White) and clinical variables were described. The primary outcome was timing of referral to palliative care. Associations between ethnicity and socioeconomic deprivation with the primary outcome were explored using multivariable regression. Setting/participants: Patients with COVID-19 referred to a hospital palliative care service across two London hospitals February–May 2020. Results: A total of 334 patients were included. 119 (36%) were from a non-White ethnic group; most commonly Black British (77, 23%) and Asian British (26, 8%). A longer time between admission and palliative care referral was associated with male gender (IRR 1.23, 95% CI 1.14–1.34) and lower levels of socioeconomic deprivation (IRR 1.61, 95% CI 1.36–1.90) but not ethnicity (IRR = 0.96, 95% CI 0.87–1.06). Conclusions: This large service evaluation showed no evidence that patients from ethnic minority or more deprived socioeconomic groups had longer time to palliative care referral. Ongoing data monitoring is essential for equitable service delivery.

scholarly journals Use of Alfentanil in Palliative Care

Pharmacy ◽  
2020 ◽  
Vol 8 (4) ◽  
pp. 240
Author(s):  
José António Ferraz Gonçalves ◽  
Filipa Sousa ◽  
Lucy Alves ◽  
Patrícia Liu ◽  
Sara Coelho
Keyword(s):  
Chronic Pain ◽  
Palliative Care ◽  
Retrospective Study ◽  
Pain Relief ◽  
Renal Impairment ◽  
Care Service ◽  
Palliative Care Service ◽  
Median Number ◽  
Second Line ◽  
Induction Of Tolerance

Alfentanil is used for chronic pain relief in palliative care. However, there is a dearth of data on its use. For this reason, a decision was made to review the use of alfentanil in palliative care. Retrospective study was carried out in a palliative care service. The files of patients who received alfentanil as an intravenous or subcutaneous continuous infusion for pain relief, between January 2018 and April 2019. In total, 111 patients received alfentanil out of 113 admissions. Of them, 56 were male, and the median age was 70 years. The median number of days on alfentanil was 6 (range 1 to 129). The most frequent primary reasons for switching to alfentanil was uncontrolled pain in 52 (46%) patients and renal impairment in 24 (21%) patients. The median 24-h initial dose of alfentanil was 4 mg (1–20), and the median final 24-h dose of alfentanil was 5 mg (1–60), (p < 0.001). The initial 24-h median number of rescue doses was 2 (0–8), and the final median number of rescue doses was 1 (0 to 8), (p = 0.025). In 56 patients who were on alfentanil for at least 7 days, the dose decreased in 3 (5%), remained stable in 10 (18%) and increased in 43 (77%). The patient on alfentanil for 129 days maintained the same dose throughout that period. Alfentanil can be a useful second-line opioid. The induction of tolerance does not seem to be particularly rapid with alfentanil.

How an extended palliative care service has benefited patients

2012 ◽  
Vol 11 (7) ◽  
pp. 24-29 ◽  
Author(s):  
Julie Rowlands ◽  
Nikki Pease ◽  
Ilora Finlay ◽  
Helen Way ◽  
Viv Cooper ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service

Late Referrals to Specialized Palliative Care Service in Japan

2005 ◽  
Vol 23 (12) ◽  
pp. 2637-2644 ◽  
Author(s):  
Tatsuya Morita ◽  
Tatsuo Akechi ◽  
Masayuki Ikenaga ◽  
Yoshiyuki Kizawa ◽  
Hiroyuki Kohara ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life Care ◽  
Response Rate ◽  
Care Service ◽  
Family Members ◽  
Palliative Care Service ◽  
Effective Response ◽  
Specialized Palliative Care ◽  
Palliative Care Units ◽  
Bereaved Family

Purpose To clarify the bereaved family's perceptions about the appropriateness of timing when physicians first referred patients to palliative care units, and to identify the factors contributing to family-perceived late referrals. Subjects and Methods A multicenter questionnaire survey was conducted on 630 bereaved family members of cancer patents who were admitted to palliative care units in Japan. A total of 318 responses were analyzed (effective response rate, 62%). Results Half of the bereaved family members regarded the timing of referrals to palliative care units as late or very late, while less than 5% of families reported early referrals (very late [19%, n = 59], late [30%, n = 96], appropriate [48%, n = 151], early [1.6%, n = 5], and very early [2.2%, n = 7]). Multiple regression analyses revealed that the independent determinants of family-perceived late referrals were: family belief before admission that palliative care shortens the patient's life, insufficient in-advance discussion about preferred end-of-life care between patients/families and physicians, families' insufficient preparation for changes of patient conditions, and hospital admission before referrals. Conclusion In Japan, the timing of referrals to palliative care units was late or very late from the families' perspectives. The independent determinants of family-perceived late referrals were: family misconception about palliative care, inadequate communication with physicians, and families' insufficient preparation for deterioration of patients' conditions. Systematic strategies to overcome these barriers would contribute to providing appropriate palliative care at all stages of cancer.

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