Planning for end-of-life care in heart failure: experience of two integrated cardiology-palliative care teams

2012 ◽  
Vol 19 (2) ◽  
Author(s):  
Miriam Johnson
Author(s):  
Kate L. M. Hinrichs ◽  
Cindy B. Woolverton ◽  
Jordana L. Meyerson

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.


2019 ◽  
Author(s):  
Helena Temkin-Greener Helena Temkin-Greener ◽  
Dana Mukamel ◽  
Susan Ladwig ◽  
Thomas , Caprio ◽  
Sally Norton ◽  
...  

2018 ◽  
Vol 75 (2) ◽  
pp. 123-126
Author(s):  
Jan Gärtner ◽  
Bernd Alt-Epping ◽  
Marion Daun

Zusammenfassung. Patienten mit nicht heilbaren und fortschreitenden neurologischen, internistischen, onkologischen und anderen Erkrankungen leiden schon bei Diagnosestellung unter teils massiven Einschränkungen der Lebensqualität durch körperliche Symptome (z. B. Schmerz und Luftnot) sowie durch psychische, soziale und spirituelle Belastungen. Palliative Care dient als umfassendes Unterstützungskonzept dem bestmöglichen Erhalt individueller Lebensqualität und umfasst mehr als nur die Betreuung in der letzten Lebensphase, im Sinne einer «End of Life Care». Ärzte und andere Berufsgruppen aller Fachrichtungen sollten daher grundlegende Massnahmen und Basiswissen der Palliative Care beherrschen und schon früh im Erkrankungsverlauf anwenden. Dazu gehören u. a. Grundfertigkeiten palliativer Schmerztherapie und Symptomkontrolle, aber auch pflegerische, psychosoziale, ethische und kommunikative Kompetenzen. Die Kooperation mit anderen medizinischen Berufsgruppen und therapeutisch Tätigen sollte sich an den spezifischen Bedürfnissen der Palliativpatienten orientieren. Nicht zuletzt braucht es die Bereitschaft, spezialisierte palliativmedizinische Dienste bei besonders belasteten Patienten in komplexen Situationen aktiv einzubeziehen. Der frühzeitige Einbezug palliativmedizinischen Denkens und Handelns ist eine Aufgabe aller Fachdisziplinen und Berufsgruppen des Gesundheitswesens im Rahmen der allgemeinen Palliative Care. Zusätzlich zu dieser allgemeinen Palliative Care ist auch eine Mitbetreuung durch multiprofessionelle Teams der spezialisierten Palliative Care möglich. Dieses ist zum Beispiel für den Bereich der häuslichen Versorgung (in Deutschland: Spezialisierte Ambulante Palliativversorgung (SAPV)) etabliert und gemäss einer aktuellen Meta-Analyse in Bezug auf Lebensqualität und Symptomlast der Patienten sowie der Ermöglichung eines Versterbens im häuslichen Umfeld sehr hilfreich. Allerdings erfolgt eine häusliche Mitbetreuung durch die spezialisierte Palliative Care selten in frühen Erkrankungsstadien. Eine andere Meta-Analyse konnte zeigen, dass Patienten in Krankenhäusern (Ambulanzen und Stationen) besonders dann von der Mitbetreuung durch spezialisierte multiprofessionelle Palliative Care-Teams (in Deutschland: Palliativdienste) in Bezug auf ihre Lebensqualität profitieren, wenn deren Integration frühzeitig im Erkrankungsverlauf stattfindet. Eine konkrete Mitbehandlung aller Patienten mit inkurablen Grunderkrankungen durch die spezialisierte Palliative Care ist im Alltag allerdings weder praktikabel noch zielführend. Vielmehr ist es angezeigt, die besonders belasteten oder unter komplexen Symptomen und Problemen leidenden Patienten frühzeitig zu identifizieren und diese Patienten entsprechend zu unterstützen. Dazu werden Indikatoren für den Einbezug spezialisierter Palliative Care verwendet. Ebenso bedarf es der Kenntnis von Schnittstellen zu den jeweiligen vorhandenen regionalen Versorgungsstrukturen.


BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e049486
Author(s):  
Aisha Macgregor ◽  
Alasdair Rutherford ◽  
Brendan McCormack ◽  
Jo Hockley ◽  
Margaret Ogden ◽  
...  

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.


2020 ◽  
pp. bmjspcare-2020-002274
Author(s):  
Eva Harris-Skillman ◽  
Stephen Chapman ◽  
Aoife Lowney ◽  
Mary Miller ◽  
William Flight

ObjectivesOptimal cystic fibrosis (CF) end-of-life care (EOLC) is a challenge. There is little formal guidance about who should deliver this and how CF multi-disciplinary teams should interact with specialist palliative care. We assessed the knowledge, experience and preparedness of both CF and palliative care professionals for CF EOLC.MethodsAn electronic questionnaire was distributed to all members of the Oxford adult CF and palliative care teams.Results35 of a possible 63 members responded (19 CF team; 16 palliative care). Levels of preparedness were low in both groups. Only 11% of CF and 19% of palliative care team members felt fully prepared for EOLC in adult CF. 58% of CF members had no (21%) or minimal (37%) general palliative care training. Similarly, 69% of the palliative care team had no CF-specific training. All respondents desired additional education. CF team members preferred further education in general EOLC while palliative care team members emphasised a need for more CF-specific knowledge.ConclusionsFew members of either the CF or palliative care teams felt fully prepared to deliver CF EOLC and many desired additional educations. They expressed complementary knowledge gaps, which suggests both could benefit from increased collaboration and sharing of specialist knowledge.


Author(s):  
Michael Connolly ◽  
Mary Bell ◽  
Fiona Lawler ◽  
Fiona Timmins ◽  
Mary Ryder

Aim: To identify the nature of the evidence reporting hospital-based palliative and end-of-life care during the COVID-19 pandemic. Background: The COVID-19 pandemic has seen an increase in the numbers of seriously ill people being cared for across all health services worldwide. Due to the rapid progression of severe symptoms, the majority of staff working in hospitals and other healthcare centres were providing end-of-life care. Little is known about the level of hospital-based palliative care service provided during the COVID-19 pandemic, particularly during surges in admission rates with an increased number of deaths accruing. Methods: A scoping review was conducted to search and select potential studies. The scoping review was guided by the framework of Arskey and O’Malley and advanced by the use of the methodology of the Joanna Briggs Institute. Results: Eighteen studies published between March 2020 and July 2021 were identified. Three broad categories included overall management strategy and logistics, symptom prevalence and management of patients with COVID-19 and end-of-life care needs within the current pandemic. Conclusions: This review highlights increased awareness and knowledge of palliative and end-of-life care provided in hospitals. The review also highlights the response of hospital-based palliative care teams to an evolving crisis, within the context of developed health systems under sustained and overwhelming pressure. Implications: Newly established clinical links and referral pathways developed during the initial COVID-19 surge between hospital-based palliative care and other healthcare teams, be continued and further enhanced. Understanding of the role of specialist palliative care providers in supporting palliative and end-of-life care within the hospital setting needs further investigation.


2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 66-66
Author(s):  
Katie Weatherstone ◽  
James Stewart ◽  
Jackie Marshall ◽  
Roopinder Gillmore

66 Background: Cancer of Unknown Primary (CUP) is the 4th most common cause of cancer death in England and Wales. [(Office for National Statistics, Mortality Statistics: Deaths registered in England and Wales. http://www.ons.gov.uk/ons/search/index.html?newquery=series+dr (accessed 1/7/14).] Patients with CUP have poor outcomes secondary to delayed, inappropriate investigations and poor treatment response. In line with NICE guidance [(NICE guidelines: CG 104 (July 2010).]. Metastatic malignant disease of unknown primary: diagnosis and management of metastatic malignant disease of unknown primary.) a CUP service was set-up at the Royal Free in June 2012. This analysis assessed its impact on patients diagnosed with metastatic cancer who were not fit for active treatment. Methods: Clinical notes were reviewed for all admissions with an imaging-based diagnosis of metastatic cancer. A retrospective analysis (January-April 2009) was compared to prospective data following the launch of the CUP service (June-December 2012). Results: The notes of 9 patients (2009) and 15 patients (2012) were compared (see table). Age and length of stay (LOS) were analysed using t-test, other data were compared using chi-squared test. All patients were reviewed by Oncology and Palliative Care teams. There was a significant reduction in mean LOS (6.7 days, 18.6 days p<0.004) and the number who died in hospital (7%, 67% p<0.002) with only one patient not dying in his preferred place. Conclusions: Prompt assessment by the CUP service facilitates early input from Oncology and Palliative Care teams resulting in reduced LOS and fewer deaths in hospital in keeping with the agenda of the End of Life Care Strategy [(End of Life Care Strategy: Promoting high quality care for all adults at the end of life (July 2008). DOH (England).]. [Table: see text]


Author(s):  
Colleen K McIlvennan ◽  
Sara E Wordingham ◽  
Larry A Allen ◽  
Daniel D Matlock ◽  
Jacqueline Jones ◽  
...  

Background: Destination therapy left ventricular assist devices (DT-LVADs) have become a treatment option for carefully selected patients with end-stage heart failure. Death is inevitable despite DT-LVAD, with 1-year mortality approximately 20% and median survival 5 years. However, end-of-life processes for LVAD patients vary significantly by institution, provider, and patient preference. Palliative care has played an increasing role in the care of this patient population, yet there remains little data on the most effective way to integrate palliative care and hospice in the DT-LVAD population. Therefore, we aimed to understand the end-of-life perspectives regarding LVADs among both cardiology and palliative care/hospice providers. Methods: Using internet-based, secure methods, we administered a 41-item survey via electronic mail to members of the American Academy of Hospice and Palliative Medicine, European Society of Cardiology-Heart Failure Association, the International Society for Heart and Lung Transplantation, and the Heart Failure Society of America to assess their perspectives on end-of-life care in patients with LVADs. Descriptive statistics were used to analyze data. Fisher’s exact test was used to compare categorical data. Results: From October to November 2011, there were a total of 440 respondents (palliative care/hospice=137; cardiology=303). Most were physicians (80%; n=320) and male (59%; n=232). The majority of providers in both groups viewed an LVAD as a life-sustaining treatment. The groups differed in their attitudes, beliefs, and comfort with end-of-life care in patients with an LVAD. Few palliative care/hospice providers believed a patient needed to be imminently dying to turn off an LVAD; whereas most cardiology providers noted patients should be imminently dying in order to consider LVAD deactivation (2% vs 60%; p=<0.001). Most palliative care/hospice providers believed requests for turning off an LVAD in a patient who is not nearing death should be honored. In contrast, just over half of cardiology providers contended the request should be honored (88% vs 57%; p=<0.001). The provider groups also disagreed on requiring ethics consultation, with most cardiology providers stating it was necessary prior to turning off an LVAD near the end of life (67% vs 24%; p=<0.001). Conclusion: Cardiology providers and palliative care/hospice providers collectively have different perceptions on management of end of life in patients with an LVAD. Bridging the gaps between these two disciplines is a critical first step in creating a more cohesive approach to end-of-life care for these patients—one that honors autonomy but respects individual provider comfort levels.


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