Abandonment at the End of Life From Patient, Caregiver, Nurse, and Physician Perspectives

Back, Anthony L.; Young, J. P.; McCown, Ellen; Engelberg, Ruth A.; Vig, Elizabeth K.; Reinke, Lynn F.; Wenrich, Marjorie D.; McGrath, Barbara Burns; Curtis, J. Randall

doi:10.1001/archinternmed.2008.583

Cited by 146 publications

(98 citation statements)

References 21 publications

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“…2,28 The result may be the best of all possible outcomes-sensitive, respectful, and compassionate care for patients and survivors, and rewarding caregiving experiences for health professionals. 20,24,25 views expressed here do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States Government.…”

Section: Resultsmentioning

confidence: 99%

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Patients' diverse beliefs about what happens at the time of death

Perkins

Cortez²,

Hazuda

2011

Journal of Hospital Medicine

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BACKGROUND:Beliefs about what happens at the time of death surely affect a patient's whole dying experience and could help guide end‐of‐life care. Yet virtually no research describes those beliefs. This exploratory study begins the descriptive process.METHODS:Assuming culture is key, we interviewed 26 Mexican‐American (MA), 18 Euro‐American (EA), and 14 African‐American (AA) inpatients about their beliefs concerning what happens at the time of death.RESULTS:One belief, that death separates the dead from the living, was widespread. Majorities of all 3 ethnic group samples and of 5 of the 6 gender subsamples expressed this belief, saying the dead “go” or “leave” from this life. Other beliefs differed by ethnic group or gender. For example, more EAs (50%) than others said death is a momentary event, and more MAs (35%) than others said death involves “being taken” by an external force (always God or Jesus). Furthermore, considerably more EA women (45%) than others said some senses persist after death. In contrast, the physiologic signs that participants cited as defining the exact time of death varied from individual to individual with no ethnic or gender pattern, and no one sign predominated.CONCLUSIONS:A few beliefs about what happens at the time of death may characterize Americans in general; many other beliefs may characterize only certain ethnic groups, genders, or individuals. To identify such beliefs and to use them to guide end‐of‐life care, hospitalists and other health professionals may have to elicit them directly from patients or survivors. Journal of Hospital Medicine 2012. © 2011 Society of Hospital Medicine

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Section: Resultsmentioning

confidence: 99%

“…22 Doing so may promote closure for the grieving. 20,[23][24][25] Health professionals should also attend to beliefs such as those about the signs and duration of the time of death. As this study showed, different people may time death by different physiologic signs.…”

Section: Discussionmentioning

confidence: 99%

Patients' diverse beliefs about what happens at the time of death

Perkins

Cortez²,

Hazuda

2011

Journal of Hospital Medicine

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“…Worldwide, the service provision by doctors to aged care facilities has been reported to be limited (Back et al, 2009;Gadzhanova & Reed, 2007;Watson, Hockley & Dewar, 2006;. A number of factors have been identified as contributing to a lack of service provision and a number of barriers have been identified that limit effective palliative care delivery by doctors to dying residents in residential aged care settings.…”

Section: Doctorsmentioning

confidence: 99%

“…For example, the impact of qualified professionals disconnecting with end of life care provision was highlighted by Back et al (2009), who conducted a longitudinal, qualitative study including "31 physicians, who identified 55 patients with incurable cancer or advanced chronic obstructive pulmonary disease, 36 family caregivers, and 25 nurses" (p. 475).…”

Section: The Federalmentioning

confidence: 99%

Dying in a rural residential aged care facility: An action research and reflection project to improve end‐of‐life care to residents with a non‐malignant disease

Rowley

Taylor

2011

Int J of Nursing Practice

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Rowley, J 2010, 'Dying in a rural residential aged care facility: an action research and reflection project to improve end of life care to residents with a non-malignant disease ', PhD thesis, Southern Cross University, Lismore, NSW. THESIS DECLARATIONI certify that the work presented in this thesis is, to the best of my knowledge and belief, original, expect as acknowledged in the text, and the material has not been submitted, either in whole or in part, for a degree at this or any other University. Special thanks, is reserved for my husband Greg, whose loving, extensive support helped me to achieve completion. In addition, to our children Dylan and Amber, who lovingly supported me throughout this journey.This thesis is dedicated to the memory of my father, Donald Raymond Riley.iii ABSTRACT This qualitative research explored end of life care provided to people dying with a non malignant disease in two Australian rural, residential aged care facilities.Residential aged care facilities provide end of life care for many people dying from non malignant diseases. The illness trajectory in non malignant diseases can be difficult to predict and symptom management can be challenging.Further, as the Australian population ages, the demand for optimal end of life care for frail, older people is anticipated to increase. Therefore, this study aimed to explore issues as identified by nurses and relatives of residents dying from a non malignant disease in order to examine ways in which nurses can provide nursing care that maximises the likelihood of a good death, identify the barriers nurses perceive to prevent optimal end of life care to dying residents, and explore the relationships between nurses and relatives of the dying resident, with the intention of improving care.Following ethical clearance, 14 aged care staff overall within both facilities were recruited to the project. Participants included Registered Nurses, Enrolled Nurses, Assistants in Nursing and other aged care staff personnel, all of whom were in a carer relationship with a dying resident. In addition, eight relatives of dying residents were interviewed, using individual, face to face, semi structured interviews.Taylor's (2006) 13 step action research and reflection method was incorporated into five main phases, including foundation building, reflection on practice iv stories, identifying thematic concerns, action plan creation, implementation and critical reflection. In both facilities, group meetings were held weekly for up to 19 weeks. Data were gathered using combinations of reflective drawing, practice stories, interviews and surveys.Relatives' interview transcripts were incorporated into the nurses' group meetings, so that end of life care issues of importance to relatives were shared, with the intention of assisting the nurses to examine the nature of aged care nursing and relationships that occur with relatives of the dying resident. This project demonstrated that it is possible to establish a working relationship with aged care nurses, with no prio...

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“…It is debated to what degree primary care physicians are involved in care at this time, as they are perceived as often transferring the care of the dying to specialists, especially for patients with cancer. [15][16][17] Studies attempting to measure this, however, have found considerable primary care physician involvement specifically for patients with terminal cancers. 17,18 The association between primary care physician involvement in end-oflife care and hospice referral is also debated.…”

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confidence: 99%

Regional Variation in Primary Care Involvement at the End of Life

et al. 2017

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PURPOSE Variation in end-of-life care in the United States is frequently driven by the health care system. We assessed the association of primary care physician involvement at the end of life with end-of-life care patterns. METHODSWe analyzed 2010 Medicare Part B claims data for US hospital referral regions (HRRs). The independent variable was the ratio of primary care physicians to specialist visits in the last 6 months of life. Dependent variables included the rate of hospital deaths, hospital and intensive care use in the last 6 months of life, percentage of patients seen by more than 10 physicians, and Medicare spending in the last 2 years of life. Robust linear regression analysis was used to measure the association of primary care physician involvement at the end of life with the outcome variables, adjusting for regional characteristics. RESULTSWe assessed 306 HRRs, capturing 1,107,702 Medicare Part B beneficiaries with chronic disease who died. The interquartile range of the HRR ratio of primary care to specialist end-of-life visits was 0.77 to 1.21. HRRs with high vs low primary care physician involvement at the end of life had significantly different patient, population, and health system characteristics. Adjusting for these differences, HRRs with the greatest primary care physician involvement had lower Medicare spending in the last 2 years of life ($65,160 vs $69,030; P = .003) and fewer intensive care unit days in the last 6 months of life (2.90 vs 4.29; P <.001), but also less hospice enrollment (44.5% of decedents vs 50.4%; P = .004).CONCLUSIONS Regions with greater primary care physician involvement in endof-life care have overall less intensive end-of-life care.

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Abandonment at the End of Life From Patient, Caregiver, Nurse, and Physician Perspectives

Cited by 146 publications

References 21 publications

Patients' diverse beliefs about what happens at the time of death

Patients' diverse beliefs about what happens at the time of death

Dying in a rural residential aged care facility: An action research and reflection project to improve end‐of‐life care to residents with a non‐malignant disease

Regional Variation in Primary Care Involvement at the End of Life

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