Systematic Review for the Quality of End-of-Life Care for Patients With Dementia in the Hospital Setting

Background: Patients with dementia may receive suboptimal end-of-life care in hospital settings reflecting broader debate around the palliative status of dementia syndromes. Objectives: To synthesize literature describing the quality of end-of-life care for patients with dementia dying in hospital. Methods: An integrative review assessed the quality of 26 articles concerning medical, nursing, and psychosocial care of patients with dementia dying in hospital settings. Results: Literature reflects a growing awareness of the need to consider a palliative approach to end-of-life care for patients with dementia in hospital. Patients with dementia are less likely to receive aggressive care at the end of life, but provision of palliative care interventions is inconsistent. Health-care professionals highlighted the need for greater education around identification and management of problematic symptoms at the end of life. Engagement of family caregivers is essential in optimizing end-of-life care, and further research is required to ascertain their experiences around decision-making. Conclusion: Although patients with dementia appear to receive less aggressive treatment at the end of life, the provision of palliative care and symptom management may be inadequate.

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La percezione degli operatori sanitari sulle cure palliative come mezzo per promuovere la qualità di vita dei pazienti e prevenire le richieste eutanasich / Healthcare workers’ perception of palliative care as a means to foster patients' quality of life and to prevent euthanasia requests*

Medicina e Morale ◽

10.4081/mem.2019.565 ◽

2019 ◽

Vol 68 (1) ◽

pp. 25-39

Author(s):

Konstantinos Mastorakis ◽

Massimo Continisio ◽

Maria Francesca Siotto ◽

Luca Navarini ◽

Franco Carnevale ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Health Care Professionals ◽

End Of Life Care ◽

Well Being ◽

Life Care ◽

National Monitoring ◽

Spiritual Well Being ◽

Hospice Workers

Nel 2010 è stata emanata in Italia la Legge 38, che punta a migliorare formazione e tirocini nel campo delle cure palliative, sebbene al momento non esista un sistema nazionale di monitoraggio di tali pratiche su scala nazionale. A livello internazionale l’eutanasia si è andata sempre più configurando come trattamento possibile fra le cure di fine vita, mentre in Italia resta formalmente illegale. Esistono alcuni studi italiani sulle prospettive dei pazienti rispetto alle cure palliative e all’eutanasia, ma la letteratura relativa alla percezione degli operatori sanitari palliativisti è esigua. Scopo del presente studio è l’indagine di tali percezioni, sia rispetto alla qualità delle cure palliative sia al potenziale ruolo dell’eutanasia nelle cure di fine vita in Italia. La ricerca è stata condotta in tre hospice romani. È stato sviluppato e somministrato un questionario con 75 item graduati secondo la scala Likert a 5 punti, utilizzando come metodi di analisi l’analisi fattoriale e, per la parte statistica, SPSS. Il questionario è stato completato da 56 soggetti. Nella percezione dei partecipanti, i fattori rilevanti per la qualità delle cure palliative sono risultati sette: sofferenza fisica e sociale, benessere psicologico e spirituale, benessere emozionale, partecipazione alle decisioni, compassione, speranza ed empatia. Inoltre, le cure palliative ridurrebbero il desiderio di morte e di eutanasia. I fattori più importanti che emergono dal lavoro sono la sofferenza o il benessere sociali, fisici e psicologici. Gli operatori sanitari coinvolti nello studio non sostengono l’ipotesi dell’eutanasia e anzi ritengono che le cure palliative riducano il desiderio di ottenerla. ---------- In 2010, the State Law no 38 was enacted in Italy, seeking to improve palliative care education and training. There is currently no national monitoring system for palliative care practices in Italy. Euthanasia has become increasingly available internationally as an alternative amidst end-of-life care options, although in Italy this is not the case, and it is formally illegal. Although there are a few studies regarding patients’ perspectives regarding the issue of palliative care and euthanasia in Italy, there is limited literature focused on the perspectives of palliative care health care professionals. The purpose of this study is to explore the perspectives of hospice workers regarding both the quality of palliative care and the potential role of euthanasia in end-of-life care in Italy. This research was conducted with hospice clinicians in three hospices in Rome. A 75 item 5-point Likert scale questionnaire was developed and administered. Factor analysis was used, and descriptive statistics were performed using SPSS. Fifty-six respondents completed the questionnaire. From participants’ perspectives, there are seven significant factors explaining the quality of palliative care in Italy: social and physical suffering, psychological and spiritual well-being, emotional well-being, participation in decision making, compassion, hope, and empathy in care, while reducing patients’ desire for death and euthanasia. The most important of these factors regard social, physical and psychological suffering and well-being. Hospice workers in this study did not support euthanasia and felt that palliative care decreases the patient’s desire for euthanasia. * The manuscript was presented as an abstract in an International Congress on Palliative Care.

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Hospital end-of-life care: families’ free-text notes

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-00239 ◽

2020 ◽

pp. bmjspcare-2020-00239

Author(s):

Sandra Kurkowski ◽

Johannes Radon ◽

Annika R Vogt ◽

Martin Weber ◽

Stephanie Stiel ◽

...

Keyword(s):

Palliative Care ◽

Quality Of Care ◽

End Of Life ◽

End Of Life Care ◽

Qualitative Content Analysis ◽

Free Text ◽

Life Care ◽

Quality Aspects ◽

Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

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The public health end-of-life care movement: history, principles, and styles of practice

10.1093/oso/9780198806677.003.0001 ◽

2018 ◽

Author(s):

Aliki Karapliagou ◽

Allan Kellehear ◽

Klaus Wegleitner

Keyword(s):

Public Health ◽

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Psychosocial Care ◽

Care Practice ◽

Life Care ◽

The Public ◽

Civic Practice ◽

Practice Methods

This chapter briefly outlines the history, key concepts, and main practice methods from public health approaches to end-of-life care. Although linked to psychosocial care approaches, its main methods draw not from psychology or health services inspired approaches but rather from health promotion, community development, and civic engagement. Key methods covered include community volunteering, social networking, community engagement, and compassionate communities and cities. The aim of these kinds of approaches is to embed palliative care practice as a social and civic practice in all sectors of society and to ensure that palliative care as a policy is represented in all civic policies (e.g. schools, workplaces, faith groups, and cultural activities) and not solely in health care.

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

Palliative Medicine ◽

10.1177/0269216318760442 ◽

2018 ◽

Vol 32 (6) ◽

pp. 1042-1054 ◽

Cited By ~ 7

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.

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Cultural Issues in Palliative Care

Hospice and Palliative Medicine and Supportive Care Flashcards ◽

10.1093/med/9780190633066.003.0018 ◽

2018 ◽

Author(s):

Sriram Yennurajalingam

Keyword(s):

Palliative Care ◽

End Of Life ◽

Cultural Differences ◽

End Of Life Care ◽

Life Care ◽

Care Providers ◽

Cultural Issues ◽

Medical Interpreter ◽

Improve Patient

Culture play a significant role in the care of patients receiving Palliative care. Understanding and managing cultural differences in end-of-life care is important as misunderstanding can result in under-treatment and unnecessary suffering for the patient and their care providers. Therefore better understanding can improve patient–physician communication and potentially improve patients’ quality of life, coping, and facilitate patients to make informed decisions and set appropriate priorities with regard to treatment and end-of-life care. This chapter discusses key cultural issues in palliative care, including the concepts of nondisclosure, the importance of the use of a medical interpreter, and the importance of an interdisciplinary team.

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‘. . . and then no more kisses!’ Exploring patients’ experiences on multidrug-resistant bacterial microorganisms and hygiene measures in end-of-life care A mixed-methods study

Palliative Medicine ◽

10.1177/0269216319881603 ◽

2019 ◽

Vol 34 (2) ◽

pp. 219-230 ◽

Cited By ~ 1

Author(s):

Maria Heckel ◽

Alexander Sturm ◽

Stephanie Stiel ◽

Christoph Ostgathe ◽

Franziska A Herbst ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Mixed Methods ◽

End Of Life ◽

End Of Life Care ◽

Multidrug Resistant ◽

Life Care ◽

Hygiene Measures ◽

Patients Wishes

Background: In end-of-life care hygiene, measures concerning multidrug-resistant bacterial microorganisms may contradict the palliative care approach of social inclusion and be burdensome for patients. Objectives: To integrate patients’ perspectives on handling multidrug-resistant bacterial microorganisms at their end of life, their quality of life, the impact of positive multidrug-resistant bacterial microorganisms’ diagnosis, protection and isolation measures on their well-being and patients’ wishes and needs regarding their care. Design: A mixed-methods convergent parallel design embedded quantitative data on the patients’ multidrug-resistant bacterial microorganisms’ trajectory and quality of life assessed by the Schedule for the Evaluation of Individual Quality of Life in qualitative data collection via interviews and focus groups. Data analysis was performed according to Grounded Theory and qualitative and quantitative results were interrelated. Setting/participants: Between March 2014 and September 2015 at two hospitals adult patients diagnosed with multidrug-resistant bacterial microorganisms and treated in a palliative care department or a geriatric ward were included in the sample group. Results: Patients in end-of-life and geriatric care reported emotional and social impact through multidrug-resistant bacterial microorganisms’ diagnosis itself, hygiene measures and lack of information. This impact affects aspects relevant to the patients’ quality of life. Patients’ wishes for comprehensive communication/information and reduction of social strain were identified from the focus group discussion. Conclusion: Patients would benefit from comprehensible information on multidrug-resistant bacterial microorganisms. Strategies minimizing social exclusion and emotional impact of multidrug-resistant bacterial microorganisms’ diagnosis in end-of-life care are needed as well as adaption or supplementation of standard multidrug-resistant bacterial microorganisms’ policies of hospitals.

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Establishment of Palliative and End-of-Life Care Services in Sri Lanka

Prehospital and Disaster Medicine ◽

10.1017/s1049023x19002760 ◽

2019 ◽

Vol 34 (s1) ◽

pp. s127-s128

Author(s):

Clifford Perera ◽

Udayangani Ramadasa ◽

Chandrika Wijeratne ◽

Panduka Karunanayake ◽

Thashi Chang ◽

...

Keyword(s):

Health Care ◽

Palliative Care ◽

Sri Lanka ◽

End Of Life ◽

Health Care Professionals ◽

End Of Life Care ◽

Task Force ◽

Steering Committee ◽

Life Care ◽

Care Services

Introduction:Sri Lanka has a rapidly aging population with an exponential rise in chronic morbidity. There had been no parallel development of palliative and end-of-life care-specific approach in health care.Aim:To implement sustainable palliative and end-of-life care services in Sri Lanka through the existing systems and resources by advocacy, collaboration, and professional commitment.Methods:Sri Lanka Medical Association established a volunteer task force for palliative and end-of-life care (PCTF) in October 2016, which comprised of multi-disciplinary health care professionals, legal fraternity, and civil society. PCTF identified the need for sensitizing the general public on the importance of palliative care, for standard guidelines and formal training for practicing health care professionals engaged in hospital and community-based palliative care. These needs are addressed through activities of PCTF in collaboration with the Ministry of Health.Results:Representing the National Steering Committee of Palliative Care, the members of the PCTF were instrumental in developing the National Strategic Framework to fill the major gap of affordable quality palliative care in the country. PCTF also published the “Palliative Care Manual for Management of Non-Cancer Patients” as a preliminary guide for health care professionals. The draft document on the End-of-Life Care Guidelines has been formulated and is currently being reviewed by the relevant medical and legal stakeholders. PCTF has organized CME lectures on palliative care all over the country for health care professionals, and also conducted lectures, exhibitions, and mass media programs to sensitize the public on palliative care.Discussion:Within a brief period, PCTF has played a key role to recognize palliative care by contributing to policy making, training, and public sensitization in palliative and end-of-life care in Sri Lanka.

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Quality of end-of-life care for veterans with metastatic cancer and advanced chronic kidney disease.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.e18281 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. e18281-e18281

Author(s):

Shakira Jeanene Grant ◽

Claire A Richards ◽

Nicholas Burwick ◽

Paul L Hebert ◽

Ann A O'Hare

Keyword(s):

Chronic Kidney Disease ◽

End Of Life ◽

End Of Life Care ◽

Metastatic Cancer ◽

Veterans Affairs ◽

Life Care ◽

Advanced Chronic Kidney Disease ◽

Bereaved Family ◽

To Receive

e18281 Background: Patients with cancer receive less aggressive interventions and higher quality end-of-life care than those with advanced chronic kidney disease (ACKD). However, the relationship between ACKD and cancer and patterns and quality of end-of-life care is poorly understood. Methods: Among a retrospective cohort of all patients with ACKD (estimated glomerular filtration rate < 20 mL/min/1.73m2) who died in Veterans Affairs facilities between 2009-2015 ( N = 9993), we compared dialysis treatment patterns, end-of-life care and family rated quality of care among those who did and did not have a diagnosis of metastatic cancer during the year before death. Data sources included Veterans Affairs clinical and administrative data, Medicare claims, and the United States Renal Data System registry. Family ratings of end-of-life care were based on responses to the Bereaved Family Survey (BFS). We fit logistic regression models and converted the coefficients to predicted probabilities Results: Overall, 1,237(12.4%) patients had a diagnostic code for metastatic cancer during the year before death. These patients were less likely than other patients to have been treated with dialysis before death. In analyses adjusted for patient characteristics and dialysis receipt, patients with metastatic cancer were less likely than other patients to receive intensive procedures (predicted probability: 18.2% vs. 36.2%) and to be admitted to the intensive care unit (ICU) within 30 days of death (30.7% vs. 50.1 %), or die in the ICU (16.2% vs. 33%). These patients were also more likely to receive a palliative care consultation within 90 days of death (46.6% vs. 37%) and to have hospice services at the time of death (55.3% vs. 33.4 %). Family-rated overall quality of care was higher for those with metastatic cancer (59.6% vs. 54.1%). Family members of patients with metastatic cancer also provided more favorable ratings for five individual BFS items including provider listening, informational, emotional support before death and pain control. All comparisons were statistically significant (i.e., P < 0.05). Conclusions: Within a national cohort of US Veterans with ACKD, the presence of metastatic cancer was associated with less dialysis utilization, less intensive medical care, and significantly higher bereaved family ratings of end-of-life care.

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