Pediatric Cardiac Critical Care Transport and Palliative Care: A Case Series

2020 ◽  
Vol 38 (1) ◽  
pp. 94-97
Author(s):  
Xiomara Garcia ◽  
Elizabeth Frazier ◽  
Janie Kane ◽  
Amber Jones ◽  
Carrie Brown ◽  
...  
Keyword(s):  
Palliative Care ◽  
Critical Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Support ◽  
Care Home ◽  
Case Series ◽  
Life Care ◽  
Cardiac Critical Care ◽  
At Home

Objective: To present our center’s experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit. Design: All cases were identified from our Cardiovascular intensive care unit ( CVICU). Patients were terminally ill children with no other surgical or medical option who were transported home between 2014 and 2018, for terminal extubation and end-of-life care according to their families’ wishes. Interventions: The patients were 7, 9 months, and 19 years; and they had very complex and chronic conditions. The families were approached by the CVICU staff during multidisciplinary meetings, where goals of care were established. Parental expectations were clarified, and palliative care team was involved, as well as home hospice was arranged pre transfer. The transfer process was discussed and all the needs were established. All patients had unstable medical conditions, with needs for transport for withdrawal of life support and death at home. Each case needed a highly trained team to support life while in transport. The need of these patients required coordination with home palliative care services, as well as community resources due to difficulty to get in their homes. Conclusions: Transportation of pediatric cardiac critical care patients for terminal extubation at home is a relatively infrequent practice. It is a feasible alternative for families seeking out of the hospital end-of-life care for their critically ill and technology dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports.

scholarly journals Key Components for the Delivery of Palliative and End-of-Life Care in Care Homes in Hong Kong: A Modified Delphi Study

2022 ◽  
Vol 19 (2) ◽  
pp. 667
Author(s):  
Helen Yue-Lai Chan ◽  
Cecilia Nim-Chee Chan ◽  
Chui-Wah Man ◽  
Alice Dik-Wah Chiu ◽  
Faith Chun-Fong Liu ◽  
...  
Keyword(s):  
Palliative Care ◽  
Hong Kong ◽  
End Of Life ◽  
Delphi Study ◽  
End Of Life Care ◽  
Care Home ◽  
Local Context ◽  
Life Care ◽  
Home Setting ◽  
Modified Delphi

Integrating the palliative care approach into care home service to address the complex care needs of older adults with frailty or advanced diseases has been increasingly recognized. However, such a service is underdeveloped in Hong Kong owing to socio-cultural and legal concerns. We adopted a modified Delphi study design to identify the key components for the delivery of palliative and end-of-life care in care home settings for the local context. It was an iterative staged method to assimilate views of experts in aged care, palliative care, and care home management. A multidisciplinary expert panel of 18 members consented to participate in the study. They rated their level of agreement with 61 candidate statements identified through a scoping review in two rounds of anonymous surveys. The steering group revised the statements in light of the survey findings. Eventually, the finalized list included 28 key statements concerning structure and process of care in seven domains, namely policy and infrastructure, education, assessment, symptom management, communication, care for dying patients, and family support. The findings of this study underscored concerns regarding the feasibility of statements devised at different levels of palliative care development. This list would be instrumental for regions where the development of palliative and end-of-life care services in care home setting is at an initial stage.

scholarly journals The facilitators and challenges of dying at home with dementia: A narrative synthesis

2018 ◽  
Vol 32 (6) ◽  
pp. 1042-1054 ◽  
Author(s):  
Caroline Mogan ◽  
Mari Lloyd-Williams ◽  
Karen Harrison Dening ◽  
Christopher Dowrick
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Eligibility Criteria ◽  
People With Dementia ◽  
Care At Home ◽  
At Home

Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia. Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia. Design: Narrative synthesis of qualitative and quantitative data. Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017. Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’. Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.

scholarly journals Palliative and end-of-life care in care homes: protocol for codesigning and implementing an appropriate scalable model of Needs Rounds in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e049486
Author(s):  
Aisha Macgregor ◽  
Alasdair Rutherford ◽  
Brendan McCormack ◽  
Jo Hockley ◽  
Margaret Ogden ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Successful Implementation ◽  
Life Care ◽  
Care Home Staff ◽  
Palliative Care Teams ◽  
The Uk

IntroductionPalliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called ‘Palliative Care Needs Rounds’ (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life.Methods and analysisThis implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4–6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents’ quality of death and care home staff capability of adopting a palliative approach.Ethics and disseminationFrenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds.Registration detailsRegistration details: ISRCTN15863801.

Critical care nurses' perceptions of obstacles and helpful behaviors in providing end-of-life care to dying patients

2000 ◽  
Vol 9 (2) ◽  
pp. 96-105 ◽  
Author(s):  
KT Kirchhoff ◽  
RL Beckstrand
Keyword(s):  
Critical Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Support ◽  
Critical Care Nurses ◽  
Life Care ◽  
Dying Patients ◽  
Life Issues ◽  
End Of Life Issues ◽  
Nurses Perceptions

BACKGROUND: Little is known about nurses' perceptions of obstacles or helpful behaviors ("helps") in providing end-of-life care in the intensive care setting. OBJECTIVE: To determine the importance of various obstacles and helps in providing end-of-life care as perceived by critical care nurses. METHODS: A questionnaire was mailed to 300 members of the American Association of Critical-Care Nurses. Nurses were asked to rate obstacles and helps in giving end-of-life care, and additional obstacles and/or helps, and answer demographic questions. RESULTS: Six of the top 10 obstacles were related to issues with patients' families that make care at the end of life more difficult, such as the family's not fully understanding the meaning of life support, not accepting the patient's poor prognosis, requesting more technical treatment than the patient wished, and being angry. Added obstacles related mostly to problems with physicians' behavior. Most helps were ways to make dying easier for patients and patients' families, such as agreement among physicians about care, dying with dignity, and families' acceptance of the prognosis. Added helps included allowing music, pets, and so forth into the patient's room. CONCLUSIONS: Nurses have difficulties with patients' families and physicians concerning end-of-life issues, especially when the behaviors remove the nurses from caring for a patient or cause the patient pain or prolong suffering. Nurses do not acknowledge having difficulty providing care to dying patients aside from conflicts that arise because of patients' families and physicians.

The importance of identifying preferred place of death

2015 ◽  
Vol 9 (1) ◽  
pp. 84-91 ◽  
Author(s):  
Maimoona Ali ◽  
Margred Capel ◽  
Gareth Jones ◽  
Terri Gazi
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Healthcare Providers ◽  
Palliative Care Service ◽  
Service Evaluation ◽  
Place Of Death ◽  
Life Care ◽  
At Home

ObjectivesThe majority of people would prefer to die at home and the stated intentions of both statutory and voluntary healthcare providers aim to support this. This service evaluation compared the preferred and actual place of death of patients known to a specialist community palliative care service.DesignAll deaths of patients (n=2176) known to the specialist palliative care service over a 5-year period were examined through service evaluation to compare the actual place of death with the preferred place of death previously identified by the patient. Triggers for admission were established when the patients did not achieve this preference.ResultsBetween 2009 and 2013, 73% of patients who expressed a choice about their preferred place of death and 69.3% who wanted to die at home were able to achieve their preferences. During the course of their illness, 9.5% of patients changed their preference for place of death. 30% of patients either refused to discuss or no preference was elicited for place of death.ConclusionsDirect enquiry and identification of preferences for end-of-life care is associated with patients achieving their preference for place of death. Patients whose preferred place of death was unknown were more likely to be admitted to hospital for end-of-life care.

Preplanned participation of paramedics in end-of-life care at home: A retrospective cohort study

2020 ◽  
pp. 026921632098171
Author(s):  
Leena K Surakka ◽  
Minna M Peake ◽  
Minna M Kiljunen ◽  
Pekka Mäntyselkä ◽  
Juho T Lehto
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Home Care Services ◽  
Life Care ◽  
Care Services ◽  
Care At Home ◽  
Care Ward ◽  
At Home

Background: Paramedics commonly face acute crises of patients in palliative care, but their involvement in end-of-life care is not planned systematically. Aim: To evaluate a protocol for end-of-life care at home including pre-planned integration of paramedics and end-of-life care wards. Design: Paramedic visits to patients in end-of-life care protocol were retrospectively studied. Setting/Participants: All of the patients who had registered for the protocol between 1 March 2015 and 28 February 2017 in North Karelia, Finland, were included in this study. Results: A total of 256 patients were registered for the protocol and 306 visits by paramedic were needed. A need for symptom control (38%) and transportation (29%) were the most common reasons for a visit. Paramedics visited 43% and 70% of the patients in areas with and without 24/7 palliative home care services, respectively ( p < 0.001); while 58% of all the visits were done outside of office hours. Problems were resolved at home in 31% of the visits. The patient was transferred to a pre-planned end-of-life care ward and to an emergency department in 48% and 16% of the cases, respectively. More patients died in end-of-life care wards in areas without (54%) than with (33%) 24/7 home care services ( p = 0.001). Conclusions: Integration of paramedics into end-of-life care at home is reasonable especially in rural areas without 24/7 palliative care services and outside of office hours. The majority of patients can be managed at home or with the help of an end-of-life care ward without an emergency visit.

scholarly journals Inpatient transfer to a care home for end-of-life care: What are the views and experiences of patients and their relatives? A systematic review and narrative synthesis of the UK literature

2016 ◽  
Vol 31 (2) ◽  
pp. 102-108 ◽  
Author(s):  
Tabitha Thomas ◽  
Isla Kuhn ◽  
Stephen Barclay
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Narrative Synthesis ◽  
Life Care ◽  
Common Part ◽  
The Uk ◽  
Hospice Palliative Care

Background: Transfers from hospital or ‘hospice palliative care units’ to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals. Aim: To understand the experiences of patients discharged to care homes for end-of-life care. Design: Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care. Results: The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough’s weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one’s quality of life and that the process of finding a care home had been traumatic. No studies investigated patients’ views prospectively, the views of staff or the processes of decision-making. Conclusion: The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views.

End of Life Care and Withdrawal of Life Support

2020 ◽  
Author(s):  
Craig Chen
Keyword(s):  
Intensive Care Unit ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Palliative Medicine ◽  
Life Support ◽  
Life Care ◽  
Palliative Care Consultation ◽  
Surgical Icu ◽  
Care Consultation

Despite advances in critical care medicine and resuscitation, many patients who are admitted to the intensive care unit (ICU) will ultimately die. Although outcomes may be better for surgical rather than medical ICU patients, addressing the end of life is a fundamental and necessary aspect of critical care for all patients. Over the last few years, we have increasingly recognized the role of palliative care in the surgical and trauma ICU. Palliative medicine in the surgical ICU setting results in decreased length of stay, improved communication with family and patients, and earlier identification of goals of care. This review covers indications for palliative care consultation, practical considerations at the end of life, withdrawal of mechanical ventilation, and symptoms and symptom management at the end of life. Tables list the American College of Surgeons statement on the principles guiding care at the end of life, guidelines for palliative care consultation in the surgical ICU, ABCDs of dignity-conserving care, palliative care principles on transitioning a patient to comfort measures only, and the process of withdrawing ventilatory support. This review 5 tables, and 33 references. Key words: comfort measures; end of life; intensive care unit end-of-life care; palliation; palliative care; palliative care consultation; palliative medicine; quality of dying; withdrawal of life support

scholarly journals A qualitative comparison of care home staff and palliative care specialists’ experiences of providing end of life care to people living and dying with dementia in care homes in two countries: A focus group study

2021 ◽  
pp. 026921632110433
Author(s):  
Melanie Handley ◽  
Deborah Parker ◽  
Frances Bunn ◽  
Claire Goodman
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Life Care ◽  
Term Care ◽  
Sustainable Solutions ◽  
Care Home Staff ◽  
People With Dementia

Background: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. Aim: To explore the views and experiences of care home staff and palliative care specialists on end of life care in care homes and understand how care home settings affected palliative care provision in England and Australia. Design/participants: Eight focus groups in Australia and England with care home staff and palliative care specialists ( n = 49). Reflexive thematic analysis was undertaken. Findings: Australian participants reported collaboration between care home staff, visiting professions and family members though case conferences. English participants discussed resident-focussed involvement from specialists that was less formally organised. Negotiating roles and responsibilities in end of life care; the importance of relationships to overcome deficiencies in formal processes; and the legitimacy and authority of advance care planning at times of crisis were recurring themes. The organisation and embedding of end of life care in processes and practices of care homes differed; this closely linked to care home procedures in Australia but was less apparent in England. Conclusion: In both countries, partnership working was recognised and valued as key to effective palliative care. Work that enables care home staff to identify challenges with visiting professionals, such as agreeing priorities for care and negotiating their shared responsibilities, may lead to context-sensitive, sustainable solutions.

Sign in / Sign up

Export Citation Format

Share Document