Dignity and palliative end-of-life care

2015 ◽  
Author(s):  
Harvey Max Chochinov ◽  
Susan E. McClement ◽  
Maia S. Kredentser
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Vulnerable Groups ◽  
Clinical Settings ◽  
Life Care ◽  
Care Providers ◽  
Key Aspects ◽  
To Receive

The concept of dignity continues to receive attention in health care, with particular implications for end-of-life care. This chapter reviews current conceptualizations of dignity, integrating medical, philosophical, and ontological perspectives. The centrality of dignity to palliative care is discussed, exploring empirical findings, which examine what dignity means to patients and families in the context of illness and end-of-life care. The chapter provides an overview of validated tools, evidence-based therapies, and practical ‘everyday’ communication skills that health-care providers in diverse clinical settings can use to enhance patient dignity. Suggestions are provided for extending existing research into the notion of dignity as it relates to vulnerable groups, and how interventions aimed at supporting patient dignity can impact family members. Dignity subsumes many key aspects of comprehensive care, which can guide health-care providers towards improving end-of-life experiences for patients and families.

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Access To Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Scoping Review ◽  
End Of Life Care ◽  
Psychosocial Interventions ◽  
Life Care ◽  
Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

Exploring Health Care Providers’ Views About Initiating End-of-Life Care Communication

2016 ◽  
Vol 34 (4) ◽  
pp. 308-317 ◽  
Author(s):  
Frances R. Nedjat-Haiem ◽  
Iraida V. Carrion ◽  
Krystana Gonzalez ◽  
Kathleen Ell ◽  
Beti Thompson ◽  
...  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers

scholarly journals Effects of End-of-life Care Stress, Calling, and Resilience on End-of-life Care Performance - A Descriptive Correlational Study

2021 ◽  
Author(s):  
Ji-Young Kim ◽  
Eun-Hi Choi
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Final Analysis ◽  
Life Care ◽  
Care Providers ◽  
University Hospitals ◽  
Care Performance

Abstract Background: Prolonging the end-of-life process means that the duration of health care work increases and the management of death is delegated to health care providers by patients’ families. Thus, it is important to explore measures to enhance the quality of end-of-life care by identifying the predictors thereof. End-of-life care should be people-centred, relieving serious health-related suffering, be it physical, psychological, social, or spiritual. Nurses who provide end-of-life care usually spend the most time with dying patients, administering care to help patients who wish to die with dignity; therefore, end-of-life nursing care is highly significant. Methods: This study was conducted on nurses of 500-bed or larger university hospitals in city D and province C from 20 August to 10 September 2020 using a structured questionnaire. A total of 213 nurses with a minimum clinical career of one year and at least one EOLC experience participated. The final analysis sample consisted of 206 nurses. Descriptive analysis, Pearson’s correlation coefficients, ANOVA, t-test, and multiple-regression analysis were used to analyse the data.Results: This study found that end-of-life care performance was significantly positively correlated with end-of-life care stress [r = .253, p < .001], sense of calling [r = .424, p < .001], and resilience [r = .397, p < .001]. End-of-life care stress [β = .185, p = .003], sense of calling [β = .259, p < .001], resilience [β = .252, p < .001], and working in a hospice ward [β = .140, p = .041] or intensive care unit [β = .218, p = .008], as opposed to the emergency department, were identified as predictors of end-of-life care performance. These factors explained 28.3% of the variance in the end-of-life care performance in this study.Conclusions: Boosting the sense of calling and resilience and reducing the end-of-life care stress among nurses providing palliative care can improve overall end-of-life care performances. Subsequent studies should develop and evaluate interventions and programs that could improve these factors to ensure a positive change in health care and enhance the quality of end-of-life care in hospitals.

The Preferred Priorities for Care document in Motor Neurone Disease: Views of bereaved relatives and carers

2011 ◽  
Vol 26 (2) ◽  
pp. 132-138 ◽  
Author(s):  
Harriet Preston ◽  
Iris Cohen Fineberg ◽  
Pauline Callagher ◽  
Douglas J Mitchell
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Hospital Staff ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Life Care ◽  
Care Providers

Increasing emphasis is being placed on the need for advanced care planning (ACP) at the end of life. The Preferred Priorities for Care (PPC) document is a patient-held record promoted by the End of Life Care Strategy as an ACP tool to promote discussion and communication amongst patients, family and health care providers. However, little research exists into evaluating its effectiveness or exploring patient and carer views, particularly in non-malignant disease. Because the majority of patients with Motor Neurone Disease (MND) lose verbal communication, early discussion of patients’ wishes and preferences, a central aspect of ACP, is vital. This study examined MND patients’ bereaved relatives’ experiences of using the PPC document and their perceptions about its impact on end-of-life care using qualitative methods. Key findings adding to existing literature were that the PPC document was felt to have little impact on end-of-life care amongst this patient group and that there was a perceived lack of awareness of the document amongst health care professionals (HCPs), in particular hospital staff. This was felt to limit the effectiveness of the document. This has obvious implications for practice, looking at awareness amongst HCPs and ways to improve this situation, particularly in light of the current pressures to meet patient preferences at the end of life.

scholarly journals Family Behaviors as Unchanging Obstacles in End-of-Life Care: 16-Year Comparative Data

2020 ◽  
Vol 29 (4) ◽  
pp. e81-e91
Author(s):  
Renea L. Beckstrand ◽  
Jasmine B. Jenkins ◽  
Karlen E. Luthy ◽  
Janelle L. B. Macintosh
Keyword(s):  
Intensive Care Unit ◽  
Critical Care ◽  
Intensive Care ◽  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Critical Care Nurses ◽  
Life Care ◽  
Care Providers ◽  
Over Time

Background Critical care nurses routinely care for dying patients. Research on obstacles in providing end-of-life care has been conducted for more than 20 years, but change in such obstacles over time has not been examined. Objective To determine whether the magnitude scores of obstacles and helpful behaviors regarding end-of-life care have changed over time. Methods In this cross-sectional survey study, questionnaires were sent to 2000 randomly selected members of the American Association of Critical-Care Nurses. Obstacle and helpful behavior items were analyzed using mean magnitude scores. Current data were compared with data gathered in 1999. Results Of the 2000 questionnaires mailed, 509 usable responses were received. Six obstacle magnitude scores increased significantly over time, of which 4 were related to family issues (not accepting the poor prognosis, intrafamily fighting, overriding the patient’s end-of-life wishes, and not understanding the meaning of the term lifesaving measures). Two were related to nurse issues. Seven obstacles decreased in magnitude, including poor design of units, overly restrictive visiting hours, and physicians avoiding conversations with families. Four helpful behavior magnitude scores increased significantly over time, including physician agreement on patient care and family access to the patient. Three helpful behavior items decreased in magnitude, including intensive care unit design. Conclusions The same end-of-life care obstacles that were reported in 1999 are still present. Obstacles related to family behaviors increased significantly, whereas obstacles related to intensive care unit environment or physician behaviors decreased significantly. These results indicate a need for better end-of-life education for families and health care providers.

Trends in Health-Care Utilization at the End of Life Among Patients With Hematologic Malignancies in a Middle-Income Country: Challenges and Opportunities in Brazil

2019 ◽  
Vol 36 (9) ◽  
pp. 775-779 ◽  
Author(s):  
Luiz Guilherme L. Soares ◽  
Renato Vieira Gomes ◽  
André M. Japiassu
Keyword(s):  
Health Care ◽  
Health Care Utilization ◽  
End Of Life ◽  
End Of Life Care ◽  
Hematologic Malignancies ◽  
Emergency Department Visits ◽  
Care Utilization ◽  
Blood Transfusions ◽  
Life Care ◽  
To Receive

Patients with hematologic malignancies (HMs) often receive poor-quality end-of-life care. This study aimed to identify trends in end-of-life care among patients with HM in Brazil. We conducted a retrospective cohort study (2015-2018) of patients who died with HM, using electronic medical records linked to health insurance databank, to evaluate outcomes consistent with health-care resource utilization at the end of life. Among 111 patients with HM, in the last 30 days of life, we found high rates of emergency department visits (67%, n = 75), intensive care unit admissions (56%, n = 62), acute renal replacement therapy (10%, n = 11), blood transfusions (45%, n = 50), and medical imaging utilization (59%, n = 66). Patients received an average of 13 days of inpatient care and the majority of them died in the hospital (53%, n = 58). We also found that almost 40% of patients (38%, n = 42) used chemotherapy in the last 14 days of life. These patients were more likely to be male (64% vs 22%; P < .001), to receive blood transfusions (57% vs 38%; P = .05), and to die in the hospital (76% vs 39%; P = .009) than patients who did not use chemotherapy in the last 14 days of life. This study suggests that patients with HM have high rates of health-care utilization at the end of life in Brazil. Patients who used chemotherapy in the last 14 days of life were more likely to receive blood transfusions and to die in the hospital.

Defining end-of-life care from perspectives of nursing ethics

2012 ◽  
Vol 19 (5) ◽  
pp. 608-618 ◽  
Author(s):  
Shigeko (Seiko) Izumi ◽  
Hiroko Nagae ◽  
Chihoko Sakurai ◽  
Emiko Imamura
Keyword(s):  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Hospice Care ◽  
Medical Model ◽  
Codes Of Ethics ◽  
Nursing Ethics ◽  
Life Care ◽  
Care Providers ◽  
Definition Of

Despite increasing interests and urgent needs for quality end-of-life care, there is no exact definition of what is the interval referred to as end of life or what end-of-life care is. The purpose of this article is to report our examination of terms related to end-of-life care and define end-of-life care from nursing ethics perspectives. Current terms related to end-of-life care, such as terminal care, hospice care, and palliative care, are based on a medical model and are restrictive in terms of diagnosis and prognosis. Using codes of ethics for nurses as a framework, we attempt to identify people to whom nurses are responsible to provide end-of-life care and develop a definition of end-of-life care that is more inclusive and applicable to a broader range of people who would benefit from end-of-life care by nurses and other health-care providers.

scholarly journals Health Care Use by Older Adults With Acute Myeloid Leukemia at the End of Life

2017 ◽  
Vol 35 (30) ◽  
pp. 3417-3424 ◽  
Author(s):  
Rong Wang ◽  
Amer M. Zeidan ◽  
Stephanie Halene ◽  
Xiao Xu ◽  
Amy J. Davidoff ◽  
...  
Keyword(s):  
Health Care ◽  
Acute Myeloid Leukemia ◽  
End Of Life ◽  
End Of Life Care ◽  
Older Patients ◽  
Myeloid Leukemia ◽  
Hospice Care ◽  
Life Care ◽  
To Receive ◽  
Acute Myeloid

Purpose Little is known about the patterns and predictors of the use of end-of-life health care among patients with acute myeloid leukemia (AML). End-of-life care is particularly relevant for older adults with AML because of their poor prognosis. Methods We performed a population-based, retrospective cohort study of patients with AML who were ≥ 66 years of age at diagnosis and diagnosed during the period from 1999 to 2011 and died before December 31, 2012. Medicare claims were used to assess patterns of hospice care and use of aggressive treatment. Predictors of these end points were evaluated using multivariable logistic regression analyses. Results In the overall cohort (N = 13,156), hospice care after AML diagnosis increased from 31.3% in 1999 to 56.4% in 2012, but the increase was primarily driven by late hospice enrollment that occurred in the last 7 days of life. Among the 5,847 patients who enrolled in hospice, 47.4% and 28.8% started their first hospice enrollment in the last 7 and 3 days of life, respectively. Among patients who transferred in and out of hospice care, 62% received transfusions outside hospice. Additionally, the use of chemotherapy within the last 14 days of life increased from 7.7% in 1999 to 18.8% in 2012. Patients who were male and nonwhite were less likely to enroll in hospice and more likely to receive chemotherapy or be admitted to intensive care units at the end of life. Conversely, older patients were less likely to receive chemotherapy or have intensive care unit admission at the end of life, and were more likely to enroll in hospice. Conclusion End-of-life care for older patients with AML is suboptimal. Additional research is warranted to identify reasons for their low use of hospice services and strategies to enhance end-of-life care for these patients.

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