scholarly journals Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis

2020 ◽  
Vol 37 (9) ◽  
pp. 728-737
Author(s):  
Melissa J. Armstrong ◽  
Slande Alliance ◽  
Pamela Corsentino ◽  
Susan M. Maixner ◽  
Henry L. Paulson ◽  
...  

Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.

2018 ◽  
Vol 35 (10) ◽  
pp. 1080-1094 ◽  
Author(s):  
Kartikeya Rajdev ◽  
Nina Loghmanieh ◽  
Maria A. Farberov ◽  
Seleshi Demissie ◽  
Theodore Maniatis

It is important for health-care providers to be comfortable in providing end-of-life (EOL) care to critically ill patients and realizing when continuing aggressive measures would be futile. Therefore, there is a need to understand health-care providers’ self-perceived skills and barriers to providing optimum EOL care. A total of 660 health-care providers from medicine and surgery departments were asked via e-mail to complete an anonymous survey assessing their self-reported EOL care competencies, of which 238 responses were received. Our study identified several deficiencies in the self-reported EOL care competencies among health-care providers. Around 34% of the participants either disagreed (strongly disagree or disagree) or were neutral when asked whether they feel well prepared for delivering EOL care. Around 30% of the participants did not agree (agree and strongly agree) that they were well prepared to determine when to refer patients to hospice. 51% of the participants, did not agree (agree and strongly agree) that clear and accurate information is delivered by team members to patients/family. The most common barrier to providing EOL care in the intensive care unit was family not accepting the patient’s poor prognosis. Nursing staff (registered nurse) had higher knowledge and attitudes mean competency scores than the medical staff. Attending physicians reported stronger knowledge competencies when compared to residents and fellows. More than half of the participants denied having received any previous training in EOL care. 82% of the participants agreed that training should be mandatory in this field. Most of the participants reported that the palliative care team is involved in EOL care when the patient is believed to be terminally ill. Apart from a need for a stronger training in the field of EOL care for health-care providers, the overall policies surrounding EOL and palliative care delivery require further evaluation and improvement to promote better outcomes in caring patients at the EOL.


1999 ◽  
Vol 27 (2) ◽  
pp. 203-203
Author(s):  
Kendra Carlson

The Supreme Court of California held, in Delaney v. Baker, 82 Cal. Rptr. 2d 610 (1999), that the heightened remedies available under the Elder Abuse Act (Act), Cal. Welf. & Inst. Code, §§ 15657,15657.2 (West 1998), apply to health care providers who engage in reckless neglect of an elder adult. The court interpreted two sections of the Act: (1) section 15657, which provides for enhanced remedies for reckless neglect; and (2) section 15657.2, which limits recovery for actions based on “professional negligence.” The court held that reckless neglect is distinct from professional negligence and therefore the restrictions on remedies against health care providers for professional negligence are inapplicable.Kay Delaney sued Meadowood, a skilled nursing facility (SNF), after a resident, her mother, died. Evidence at trial indicated that Rose Wallien, the decedent, was left lying in her own urine and feces for extended periods of time and had stage I11 and IV pressure sores on her ankles, feet, and buttocks at the time of her death.


2018 ◽  
Vol 35 (11) ◽  
pp. 1409-1416 ◽  
Author(s):  
Marcos Montagnini ◽  
Heather M. Smith ◽  
Deborah M. Price ◽  
Bidisha Ghosh ◽  
Linda Strodtman

Background: In the United States, most deaths occur in hospitals, with approximately 25% of hospitalized patients having palliative care needs. Therefore, the provision of good end-of-life (EOL) care to these patients is a priority. However, research assessing staff preparedness for the provision of EOL care to hospitalized patients is lacking. Objective: To assess health-care professionals’ self-perceived competencies regarding the provision of EOL care in hospitalized patients. Methods: Descriptive study of self-perceived EOL care competencies among health-care professionals. The study instrument (End-of-Life Questionnaire) contains 28 questions assessing knowledge, attitudes, and behaviors related to the provision of EOL care. Health-care professionals (nursing, medicine, social work, psychology, physical, occupational and respiratory therapist, and spiritual care) at a large academic medical center participated in the study. Means were calculated for each item, and comparisons of mean scores were conducted via t tests. Analysis of variance was used to identify differences among groups. Results: A total of 1197 questionnaires was completed. The greatest self-perceived competency was in providing emotional support for patients/families, and the least self-perceived competency was in providing continuity of care. When compared to nurses, physicians had higher scores on EOL care attitudes, behaviors, and communication. Physicians and nurses had higher scores on most subscales than other health-care providers. Conclusions: Differences in self-perceived EOL care competencies were identified among disciplines, particularly between physicians and nurses. The results provide evidence for assessing health-care providers to identify their specific training needs before implementing educational programs on EOL care.


2018 ◽  
Vol 36 (4) ◽  
pp. 273-281 ◽  
Author(s):  
Jennifer Gabbard ◽  
Allison Jordan ◽  
Julie Mitchell ◽  
Mark Corbett ◽  
Patrick White ◽  
...  

The current opioid crisis in the United States is a major problem facing health-care providers, even at the end of life. Opioids continue to be the mainstay treatment for pain at the end of life, with the prevalence of pain reported in up to 80% of patients and tends to increase as one gets closer toward the end of life. In the past year, 20.2 million Americans had a substance use disorder (SUD) and SUDs are disabling disorders that largely go untreated. In addition, the coexistence of both a mental health and SUD is very common with the use of opioids often as a means of chemical coping. Most hospice programs do not have standardized SUD policies/guidelines in place despite the increasing concerns about substance abuse within the United States. The goal of this article is to review the literature on this topic and offer strategies on how to manage pain in patients who have active SUD or who are at risk for developing SUD in those dying on hospice.


2018 ◽  
Vol 31 (7) ◽  
pp. 1121-1133 ◽  
Author(s):  
Roschelle Heuberger ◽  
Helen Wong

Objective: Despite the growing evidence against artificial nutrition and hydration (ANH) use among patients with advanced dementia, little is known about the perspectives of the health care team. This study examined the knowledge, attitudes, and beliefs of physicians and other health care providers regarding the use of ANH at the end of life (EOL). Methods: A cross-sectional survey explored the provision of EOL care using a hypothetical case scenario of a patient with advanced dementia and dysphagia. Questionnaire items were analyzed using parametric and nonparametric approaches. Results: In this sample of 323 respondents, statistical significance was found between physicians and other health care providers’ views on ANH and its related beneficial effects or health outcomes in EOL care. Discussion: Results indicate knowledge deficits in physicians and other health care professionals and highlight the need for comprehensive continuing education programs on EOL topics. Conclusion: Differences in knowledge, attitudes and beliefs regarding ANH in EOL among healthcare providers were observed and education regarding evidence based clinical guidelines are necessary.


2016 ◽  
Vol 34 (6) ◽  
pp. 518-523 ◽  
Author(s):  
Mei Ching Lee ◽  
Daniel P. Sulmasy ◽  
Joseph Gallo ◽  
Joan Kub ◽  
Mark T. Hughes ◽  
...  

Introduction: Many patients with advanced heart failure (HF) experience the life-extending benefits of implantable cardioverter-defibrillators (ICD), but at the end stage of HF, patients may experience shocks with increasing frequency and change the plan for end-of-life (EOL) care including the deactivation of the ICD. This report describes family members’ experiences of patients with ICD making decisions at EOL. Understanding the decision-making of patients with ICD at EOL can promote informed decision-making and improve the quality of EOL care. Methods: This pilot study used a mixed methods approach to test the effects of a nurse-guided discussion in decision-making about ICD deactivation (turning off the defibrillation function) at the EOL. Interviews were conducted, audiotaped, and transcribed in 2012 to 2013 with 6 family members of patients with advanced HF and ICDs. Three researchers coded the data and identified themes in 2014. Results: Three main themes described family members’ experiences related to patients having HF with ICDs making health-care decision at EOL: decision-making preferences, patients’ perception on ICD deactivation, and communication methods. Discussion: Health-care providers need to have knowledge of patients’ decision-making preferences. Preferences for decision-making include the allowing of appropriate people to involve and encourages direct conversation with family members even when advance directives is completed. Information of ICD function and the option of deactivation need to be clearly delivered to patients and family members. Education and guidelines will facilitate the communication of the preferences of EOL care.


2020 ◽  
Vol 32 (5) ◽  
pp. 276-284
Author(s):  
William J. Jefferson

The United States Supreme Court declared in 1976 that deliberate indifference to the serious medical needs of prisoners constitutes the unnecessary and wanton infliction of pain…proscribed by the Eighth Amendment. It matters not whether the indifference is manifested by prison doctors in their response to the prisoner’s needs or by prison guards intentionally denying or delaying access to medical care or intentionally interfering with treatment once prescribed—adequate prisoner medical care is required by the United States Constitution. My incarceration for four years at the Oakdale Satellite Prison Camp, a chronic health care level camp, gives me the perspective to challenge the generally promoted claim of the Bureau of Federal Prisons that it provides decent medical care by competent and caring medical practitioners to chronically unhealthy elderly prisoners. The same observation, to a slightly lesser extent, could be made with respect to deficiencies in the delivery of health care to prisoners of all ages, as it is all significantly deficient in access, competencies, courtesies and treatments extended by prison health care providers at every level of care, without regard to age. However, the frailer the prisoner, the more dangerous these health care deficiencies are to his health and, therefore, I believe, warrant separate attention. This paper uses first-hand experiences of elderly prisoners to dismantle the tale that prisoner healthcare meets constitutional standards.


2021 ◽  
Author(s):  
Ai Chikada ◽  
Sayaka Takenouchi ◽  
Yoshiki Arakawa ◽  
Kazuko Nin

Abstract Background End-of-life discussions (EOLDs) in patients with high-grade glioma (HGG) have not been well described. Therefore, this study examined the appropriateness of timing and the extent of patient involvement in EOLDs and their impact on HGG patients. Methods A cross-sectional survey was conducted among 105 bereaved families of HGG patients at a university hospital in Japan between July and August 2019. Fisher’s exact test and the Wilcoxon rank-sum test were used to assess the association between patient participation in EOLDs and their outcomes. Results In total, 77 questionnaires were returned (response rate 73%), of which 20 respondents replied with refusal documents. Overall, 31/57 (54%) participated in EOLDs at least once in acute hospital settings, and a significant difference was observed between participating and nonparticipating groups in communicating the patient’s wishes for EOL care to the family (48% vs 8%, P = .001). Moreover, >80% of respondents indicated that the initiation of EOLDs during the early diagnosis period with patients and families was appropriate. Most EOLDs were provided by neurosurgeons (96%), and other health care providers rarely participated. Additionally, patient goals and priorities were discussed in only 28% of the EOLDs. Patient participation in EOLDs was not associated with the quality of EOL care and a good death. Conclusions Although participation in EOLDs is relatively challenging for HGG patients, this study showed that participation in EOLDs may enable patients to express their wishes regarding EOL care. It is important to initiate EOLDs early on through an interdisciplinary team approach while respecting patient goals and priorities.


1985 ◽  
Vol 11 (2) ◽  
pp. 195-225
Author(s):  
Karla Kelly

AbstractUntil recently, physicians have been the primary health care providers in the United States. In response to the rising health care costs and public demand of the past decade, allied health care providers have challenged this orthodox structure of health care delivery. Among these allied health care providers are nurse practitioners, who have attempted to expand traditional roles of the registered nurse.This article focuses on the legal issues raised by several major obstacles to the expansion of nurse practitioner services: licensing restrictions, third party reimbursement policies, and denial of access to medical facilities and physician back-up services. The successful judicial challenges to discriminatory practices against other allied health care providers will be explored as a solution to the nurse practitioners’ dilemma.


2020 ◽  
Vol 59 (04/05) ◽  
pp. 162-178
Author(s):  
Pouyan Esmaeilzadeh

Abstract Background Patients may seek health care services from various providers during treatment. These providers could serve in a network (affiliated) or practice separately (unaffiliated). Thus, using secure and reliable health information exchange (HIE) mechanisms would be critical to transfer sensitive personal health information (PHI) across distances. Studying patients' perceptions and opinions about exchange mechanisms could help health care providers build more complete HIEs' databases and develop robust privacy policies, consent processes, and patient education programs. Objectives Due to the exploratory nature of this study, we aim to shed more light on public perspectives (benefits, concerns, and risks) associated with the four data exchange practices in the health care sector. Methods In this study, we compared public perceptions and expectations regarding four common types of exchange mechanisms used in the United States (i.e., traditional, direct, query-based, patient-mediated exchange mechanisms). Traditional is an exchange through fax, paper mailing, or phone calls, direct is a provider-to-provider exchange, query-based is sharing patient data with a central repository, and patient-mediated is an exchange mechanism in which patients can access data and monitor sharing. Data were collected from 1,624 subjects using an online survey to examine the benefits, risks, and concerns associated with the four exchange mechanisms from patients' perspectives. Results Findings indicate that several concerns and risks such as privacy concerns, security risks, trust issues, and psychological risks are raised. Besides, multiple benefits such as access to complete information, communication improvement, timely and convenient information sharing, cost-saving, and medical error reduction are highlighted by respondents. Through consideration of all risks and benefits associated with the four exchange mechanisms, the direct HIE mechanism was selected by respondents as the most preferred mechanism of information exchange among providers. More than half of the respondents (56.18%) stated that overall they favored direct exchange over the other mechanisms. 42.70% of respondents expected to be more likely to share their PHI with health care providers who implemented and utilized a direct exchange mechanism. 43.26% of respondents believed that they would support health care providers to leverage a direct HIE mechanism for sharing their PHI with other providers. The results exhibit that individuals expect greater benefits and fewer adverse effects from direct HIE among health care providers. Overall, the general public sentiment is more in favor of direct data transfer. Our results highlight that greater public trust in exchange mechanisms is required, and information privacy and security risks must be addressed before the widespread implementation of such mechanisms. Conclusion This exploratory study's findings could be interesting for health care providers and HIE policymakers to analyze how consumers perceive the current exchange mechanisms, what concerns should be addressed, and how the exchange mechanisms could be modified to meet consumers' needs.


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