Important aspects of end-of-life care. Survey of patients visiting the primary care office

2011 ◽  
Vol 152 (27) ◽  
pp. 1082-1092 ◽  
Author(s):  
Ágnes Csikós ◽  
Lajos Nagy ◽  
Csilla Busa ◽  
János Kállai
Keyword(s):  
Primary Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Psychosocial Support ◽  
Death And Dying ◽  
Life Care ◽  
Truth Telling ◽  
Convenience Sample ◽  
To Receive

Introduction: Death and dying are still taboo topics in Hungary. The care of the dying, the adequate relief of their symptoms and the psychosocial support of both patients and their caregivers are not yet well addressed. Aims: Authors obtained information about the feelings and thoughts of patients on death and dying, and about their expectations for end-of-life care. Methods: Mailed questionnaire was send to a convenience sample of 29 adult primary care offices where a total of 845 unselected patients completed the questionnaire. Results: More than two thirds (69%) of respondents would like to receive end of life care in their home. Only 19% of respondents would prefer to die in a hospital. Respondents’ greatest fear was to lose their autonomy (55%). The second most noted concern was fear from pain (38%). According to 93% of the participants, truth telling is very important in the event of terminal illness. Conclusions: Hungarian patients prefer to receive end of life care in their home. Our data support the need for improvement in three primary areas, physician communication skills, pain and symptom management, and expansion of home hospice care. Orv. Hetil., 2011, 152, 1082–1092.

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.

scholarly journals Timely community palliative and end-of-life care: a realist synthesis

2021 ◽  
pp. bmjspcare-2021-003066
Author(s):  
Mila Petrova ◽  
Geoff Wong ◽  
Isla Kuhn ◽  
Ian Wellwood ◽  
Stephen Barclay
Keyword(s):  
Primary Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Death And Dying ◽  
Unintended Consequences ◽  
Realist Synthesis ◽  
Current Evidence ◽  
Life Care ◽  
Text Documents ◽  
Timely Initiation

BackgroundCommunity-based and home-based palliative and end-of-life care (PEoLC) services, often underpinned by primary care provision, are becoming increasingly popular. One of the key challenges associated with them is their timely initiation. The latter requires an accurate enough prediction of how close to death a patient is.MethodsUsing ‘realist synthesis’ tools, this review sought to develop explanations of how primary care and community PEoLC programmes generate their outcomes, with the explanations presented as context–mechanism–outcome configurations. Medline, Embase, CINAHL, PsycINFO, Web of Science, ASSIA, Sociological Abstracts and SCIE Social Care Online were originally searched. A multistage process of focusing the review was employed, with timely identification of the EoL stage and timely initiation of associated services representing the final review focus. Synthesised sources included 21 full-text documents and 324 coded abstracts, with 253 ‘core contents’ abstracts generating >800 codes.ResultsNumerous PEoLC policies and programmes are embedded in a framework of Preparation and Planning for Death and Dying, with identification of the dying stage setting in motion key systems and services. This is challenged by: (1) accumulated evidence demonstrating low accuracy of prognostic judgements; (2) many individuals’ orientation towards Living and Hope; (3) expanding grey zones between palliative and curative care; (4) the complexity of referral decisions; (5) the loss of pertinent information in hierarchical relationships and (6) the ambiguous value of having ‘more time’.ConclusionPrioritising temporal criteria in initiating PEoLC services is not sufficiently supported by current evidence and can have significant unintended consequences.PROSPERO registration numberCRD42018097218.

scholarly journals The Role of Primary Care in End of Life Care

2018 ◽  
Vol 1 (2) ◽  
pp. 53
Author(s):  
Aghnaa Gayatri
Keyword(s):  
Primary Care ◽  
Health Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
World Health ◽  
Life Care ◽  
Major Health Problem ◽  
Levels Of Care ◽  
Dying Patient

Primary Care has been acknowledged to be the solution towards the achievement of “Health for All” as declared in the Declaration of Alma Ata1. Its importance has been further emphasized in the World Health Organization (WHO) 2008 Report2, where the changing world is in dire need of health care that surpasses all boundaries and can be delivered to all. It is stated that current health systems that are mostly hospital-based pose the risk of fragmented and uncoordinated care for the people. The move towards primary care is aimed at solving this problem amongst many others.One of the features that distinguishes primary care from other levels of care is that it addresses the needs of people irrespective of their age, gender, and disease, thus caring for individuals from the very beginning of life until death3. Caring for the dying patient has been traditionally considered as palliative or hospice care which is being provided to terminally ill patients in secondary settings4. With the shift of population by the increasing of elderly people, chronic conditions also become a major health problem which can eventually lead to death, and these often occur at homes and at the nursing care centers5. Care for the dying patient should not be just about preparing the patient for death. It is important to manage the dying patient in terms of management of symptoms and providing psychological support. Primary care situated as the first line of health care has an important role in ensuring that end of life care is well provided from the earliest stage possible, in coordination with other services when necessary.......

scholarly journals Associations Between Dementia, Race-Ethnicity, and Intensive and Patient-Centered End-of-Life Care

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 329-329
Author(s):  
Amanda Reich ◽  
Robert Semco ◽  
Holly Prigerson ◽  
Joel Weissman ◽  
Adoma Manful ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Hospital Death ◽  
Administrative Claims ◽  
Care Hospital ◽  
Life Care ◽  
Patient Centered ◽  
Race Ethnicity ◽  
To Receive

Abstract A retrospective cohort analysis of Medicare administrative claims data from 2016-2018 compared intensive and patient-centered end-of-life care measures in persons with and without dementia, including the moderating effects of race/ethnicity. Over half (53%) of 485,209 Medicare decedents had a dementia diagnosis. Decedents with dementia were 31-34% less likely to receive intensive end-of-life care (hospital death 95%CI: 0.64-0.67; hospitalization in last 30 days 95%CI: 0.68-0.70) and 50% more likely to receive timely hospice care (95%CI: 1.48-1.52). The association between dementia and end-of-life care varied by decedent race/ethnicity. Compared to non-Hispanic white decedents without dementia, non-Hispanic Black, Hispanic and Asian decedents with dementia were significantly more likely to receive intensive end-of-life care. Non-Hispanic Black decedents with dementia were 23% more likely to receive timely hospice care (95%CI: 1.11-1.36). Additional research is needed to understand why persons with dementia receive less intensive end-of-life care and why differences exist based on racial/ethnic status.

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

scholarly journals Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Adult Children ◽  
End Of Life Care ◽  
Death And Dying ◽  
Family Members ◽  
Life Care ◽  
Joint Decision ◽  
Aging Parents ◽  
Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

scholarly journals Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Ishrat Islam ◽  
Annmarie Nelson ◽  
Mirella Longo ◽  
Anthony Byrne
Keyword(s):  
Social Media ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Public Attitudes ◽  
Death And Dying ◽  
Service Utilisation ◽  
Life Care ◽  
Manner Of Death ◽  
Attitudes Towards Death

Abstract Background Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales. Methods An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis. Results 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking about death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals could initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. Conclusions People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation-drivers to support health professionals and people towards shared decisions which align with people’s end of life wishes and preferences.

Help Me Understand: Providing Palliative Care to Individuals With Serious Mental Illness

2021 ◽  
pp. 104990912110107
Author(s):  
Kate L. M. Hinrichs ◽  
Cindy B. Woolverton ◽  
Jordana L. Meyerson
Keyword(s):  
Mental Illness ◽  
Palliative Care ◽  
End Of Life ◽  
Serious Mental Illness ◽  
End Of Life Care ◽  
Psychosocial Support ◽  
Life Care ◽  
Case Examples ◽  
Increased Risk ◽  
Palliative Care Teams

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.

“Is there no Balm in Gilead?”: Health, Illness, Death, and Dying in the Hebrew Bible and Today

2021 ◽  
Vol 75 (3) ◽  
pp. 196-206
Author(s):  
Joel S. Kaminsky
Keyword(s):  
End Of Life ◽  
Hebrew Bible ◽  
End Of Life Care ◽  
Death And Dying ◽  
Life Care ◽  
The U.S ◽  
Conceptual Resources

This essay argues that the Hebrew Bible contains conceptual resources that can contribute to and enrich the ongoing discussions surrounding healthcare in the U.S. and in other modern Western societies. These biblical ideas may help us reframe our understandings of sickness and health, something urgently needed if we wish individuals and their families to have less medically invasive and less alienating experiences of illness, most especially during end of life care.

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