Does Culture Matter? Young and Middle-Aged Iranian-American Adults’ Perspectives Regarding End-of-Life Care Planning

2021 ◽  
pp. 104990912110368
Author(s):  
Zahra Rahemi ◽  
Veronica Parker
Keyword(s):  
End Of Life ◽  
Online Survey ◽  
English Language ◽  
Treatment Options ◽  
Care Planning ◽  
Middle Aged ◽  
Cross Sectional ◽  
Comfort Care ◽  
Iranian American ◽  
Eol Care

Background: An increase of cultural diversity and treatment options offer opportunities and challenges related to end-of-life (EOL) care for healthcare providers and policymakers. EOL care planning can help reduce confusion and uncertainty when individuals and family members need to make decisions about EOL care options. Objective: The purpose of this study was to investigate preferences, attitudes, and behaviors regarding EOL care planning among young and middle-aged Iranian-American adults. Methods: A cross-sectional national sample of 251 Iranian-American adults completed surveys. Paper and online surveys in English and Persian were offered to potential participants. Results: All the participants completed online survey in English language. In incurable health conditions, 56.8% preferred hospitalization and intensive treatments. From the 40.6% participants who preferred comfort care, most preferred care at home (29.5%) compared to an institution (11.1%). Those who preferred hospitalization at EOL mostly preferred intensive and curative treatments. The mean score of attitudes toward advance decision-making was moderately high (11.48 ± 2.77). Favorable attitudes were positively associated with acculturation (r = .31, p < .001), age (r = .15, p < .05), and number of years living in the U.S. (r = .26, p < .001). Conversely, spirituality and favorable attitudes were negatively associated (r = −.17, p < .05). Conclusion: Immigrant and culturally diverse individuals have experienced different living and healthcare environments. These differences can influence their EOL care planning and decisions. Knowledge of diverse perspectives and cultures is essential to design culturally congruent plans of EOL care.

Preferences Regarding and Communication About End-of-Life Care Among Older Iranian-American Adults

2019 ◽  
Vol 41 (10) ◽  
pp. 1499-1516 ◽  
Author(s):  
Zahra Rahemi ◽  
Lynn M. Dunphy ◽  
David Newman
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Regression Models ◽  
Culturally Diverse ◽  
Cross Sectional Study ◽  
Life Care ◽  
Sectional Study ◽  
Cross Sectional ◽  
Iranian American ◽  
Eol Care

Using a cross-sectional study, this article addresses end-of-life (EOL) care for older Iranian-American adults. The purposes are twofold: (a) to explore participants’ preferences for home or hospital care in the event they face EOL conditions and (b) to learn how participants prefer to communicate these preferences. Results showed that about half of the 130 participants had communicated their EOL care preferences through written documents and/or verbal discussions. A set of factors predicted the preferences (χ2(9) = 17.42, p < .042) and communications (χ2(9) = 19.54, p = .021). Regression models indicated that higher scores of social support ( p = .013) and greater numbers of cohabitants ( p = .021) were associated with a preference for home care, and experience of a loved one’s death was associated with participants being willing to communicate their preferences for type of care ( p = .015). This study can bridge the gap between culturally diverse older adults’ preferences and types of EOL care they ultimately receive.

Barriers to Palliative Care Referral and Advance Care Planning (ACP) for Patients With COPD: A Cross-Sectional Survey of Palliative Care Nurses

2021 ◽  
pp. 104990912110181
Author(s):  
Rebecca Disler ◽  
Amy Pascoe ◽  
Tim Luckett ◽  
Doranne Donesky ◽  
Louis Irving ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
Treatment Options ◽  
Chronic Obstructive ◽  
Free Text ◽  
Care Planning ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Advance Care

Background: Chronic obstructive pulmonary disease (COPD) is a progressive, life-limiting illness that requires end-of-life care planning, yet remains under-served. Understanding barriers to advance care planning (ACP) from different specialties’ perspectives will enable a co-ordinated, cross-disciplinary approach to improving ACP access. Methods: Australia and New Zealand palliative care nurses were invited to complete an anonymous online cross-sectional survey. Questions tested knowledge of validated ACP-related practice indicators and canvassed perspectives on barriers to ACP in COPD. Data are described and free-text thematically analyzed. Results: The 90 participants had high knowledge and positive attitudes to ACP in COPD, however, lacked consensus as to whether patients want to know their prognosis or discuss treatment options and end-of-life wishes. 59% discussed ACP in more than half their patients with COPD, and 77% and 73% routinely initiated or followed-up these discussions. Key barriers included: lack of confidence and training in COPD; reluctance to distress patients and families; referral late in the disease course; lack of consensus on referral timing; and lack of patient and clinician understanding of COPD prognoses. Many reported that lack of consensus in the treating team, paired with prognostic uncertainty, precluded timely ACP engagement. Conclusions: Palliative care nurses have substantial knowledge and positive beliefs regarding ACP, however, some beliefs and practices lack alignment with qualitative data on patients’ wishes in COPD. While palliative care nurses are well placed to facilitate early implementation for patients with advanced COPD, ACP training and practice guidelines specific to COPD may increase implementation in this life-limiting disease.

scholarly journals Discussions Between People With Dementia and Care Partners About End-of-Life Care Planning

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 162-162
Author(s):  
Megan Shepherd-Banigan ◽  
Cassie Ford ◽  
Emmanuelle Belanger ◽  
Courtney Van Houtven
Keyword(s):  
End Of Life ◽  
Linear Models ◽  
Positive Association ◽  
Living Will ◽  
Amyloid Pet ◽  
Care Planning ◽  
Care Plans ◽  
People With Dementia ◽  
Care Partners ◽  
Eol Care

Abstract Advanced care planning (ACP) leads to better end-of-life (EoL) care. Yet, some care-partners are unaware of the person with dementia’s (PwD) preferences. Care-partners play an important role in urging PwD to consider their EoL care wishes early in their disease course and to document those wishes. However, it is unknown whether discussions between care-partners and PwD are associated with documenting EoL care plans. We apply generalized linear models to baseline data from the CARE-IDEAS study which includes a sample of patients who received an amyloid PET scan and their care-partners (n=1,672). We examine the association between PwD report of having discussed EoL care with their care-partner and PwD report of having documented their plans through an advanced directive, a living will, or designating a health care proxy. PwD who reported speaking with their care-partners about EoL care were 10% (marginal probability (MP) 0.10; 95% CI: 0.8, 0.13) more likely to have documented their EoL care wishes. Furthermore, if PwD and care-partners agreed that they had discussed EoL care, PwD were 7% (MP 0.7; 95% CI 0.04, 0.10) more likely to report that they documented their EoL care plans. The positive association between communicating with care-partners about EoL care and having formal EoL care plans suggests that the ACP process could be a systematic approach to increase the care-partner’s knowledge of PwD EoL wishes. These results also suggest that increasing involvement of care partners in ACP may encourage patients to document their wishes at end of life.

Cannabis and End-of-Life Care: A Snapshot of Hospice Planning and Experiences Among Illinois Medical Cannabis Patients With A Terminal Diagnosis

2021 ◽  
pp. 104990912110186
Author(s):  
James Alton Croker ◽  
Julie Bobitt ◽  
Sara Sanders ◽  
Kanika Arora ◽  
Keith Mueller ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Fast Track ◽  
Hospice Care ◽  
Cannabis Use ◽  
Care Plan ◽  
Medical Cannabis ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Eol Care

Introduction: Between 2013 and 2019, Illinois limited cannabis access to certified patients enrolled in the Illinois Medical Cannabis Program (IMCP). In 2016, the state instituted a fast-track pathway for terminal patients. The benefits of medicinal cannabis (MC) have clear implications for patients near end-of-life (EOL). However, little is known about how terminal patients engage medical cannabis relative to supportive care. Methods: Anonymous cross-sectional survey data were collected from 342 terminal patients who were already enrolled in ( n = 19) or planning to enroll ( n = 323) in hospice for EOL care. Logistic regression models compare patients in the sample on hospice planning vs. hospice enrollment, use of palliative care vs. hospice care, and use standard care vs non-hospice palliative care. Results: In our sample, cancer patients ( OR = 0.21 (0.11), p < .01), and those who used the fast-track application into the IMCP ( OR = 0.11 (0.06), p < .001) were less likely to be enrolled in hospice. Compared to patients in palliative care, hospice patients were less likely to report cancer as their qualifying condition ( OR = 0.16 (0.11), p < .01), or entered the IMCP via the fast-track ( OR = 0.23 (0.15), p < .05). Discussion: Given low hospice enrollment in a fairly large EOL sample, cannabis use may operate as an alternative to supportive forms of care like hospice and palliation. Clinicians should initiate conversations about cannabis use with their patients while also engaging EOL Care planning discussions as an essential part of the general care plan.

Factors That Enable or Complicate End-of-Life Transitions in Critical Care

2005 ◽  
Vol 14 (6) ◽  
pp. 513-521 ◽  
Author(s):  
James M. Badger
Keyword(s):  
Intensive Care ◽  
End Of Life ◽  
Life Support ◽  
Treatment Options ◽  
Acute Care Hospital ◽  
Life Transitions ◽  
Care Hospital ◽  
Comfort Care ◽  
Life Threatening Illness ◽  
Medical Intensive Care

• Background Nurses in medical intensive care units are routinely involved in negotiations to maintain or withdraw life support. How nurses move from aggressively attempting to extend life to letting life end is not well understood. • Objective To explore nurses’ experiences of moving from cure- to comfort-oriented care and to describe factors that inhibit or facilitate such transitions. • Method A descriptive qualitative research design with brief observation of participants and focus group interviews was used. Participants were 19 female and 5 male nurses in an 18-bed medical intensive care unit in a 719-bed acute care hospital in the northeastern United States. • Results The transition point between cure- and comfort-oriented care was unclear. Nurses reported that the patient’s age, misunderstanding of the illness by the patient’s family, family discord, and shifting medical care decisions made end-of-life transitions difficult. Conversely, developing a consensus among patients, patients’ families, and staff about the direction of medical therapy; exhausting treatment options; and patients’ lack of response to aggressive medical interventions helped nurses move toward comfort care. • Conclusions The most distressing situations for staff were dealing with younger patients with an acute life-threatening illness and performing futile care on elderly patients. End-of-life transitions were difficult when patients’ families had conflicts or were indecisive about terminating treatment and when physicians kept offering options that were unlikely to change patients’ prognosis. The most important factor enabling nurses to move from cure- to comfort-oriented care was developing a consensus about the treatment.

scholarly journals Association Between Region of Birth and Advance Care Planning Documentation Among Older Australian Migrant Communities: A Multicenter Audit Study

2020 ◽  
Vol 76 (1) ◽  
pp. 109-120
Author(s):  
Craig Sinclair ◽  
Marcus Sellars ◽  
Kimberly Buck ◽  
Karen M Detering ◽  
Ben P White ◽  
...  
Keyword(s):  
Health Professional ◽  
Language Proficiency ◽  
Family Involvement ◽  
Advance Care Planning ◽  
English Language ◽  
Care Facility ◽  
Care Planning ◽  
Cross Sectional ◽  
Term Care ◽  
Advance Care

Abstract Objectives This study explored associations between birth region, sociodemographic predictors, and advance care planning (ACP) uptake. Methods A prospective, multicenter, cross-sectional audit study of 100 sites across 8 Australian jurisdictions. ACP documentation was audited in the health records of people aged 65 years or older accessing general practice (GP), hospital, and long-term care facility (LTCF) settings. Advance care directives (ACDs) completed by the person (“person completed ACDs”) and ACP documents completed by a health professional or other person (“health professional or someone else ACP”) were counted. Hierarchical multilevel logistic regression assessed associations with birth region. Results From 4,187 audited records, 30.0% (1,152/3,839) were born outside Australia. “Person completed ACDs” were less common among those born outside Australia (21.9% vs 28.9%, X2 (1, N = 3,840) = 20.3, p &lt; .001), while “health professional or someone else ACP” was more common among those born outside Australia (46.4% vs 34.8%, X2 (1, N = 3,840) = 45.5, p &lt; .001). Strongest associations were found for those born in Southern Europe: “person completed ACD” (odds ratio [OR] = 0.56, 95% confidence interval [CI] = 0.36–0.88), and “health professional or someone else ACP” (OR = 1.41, 95% CI = 1.01–1.98). English-language proficiency and increased age significantly predicted both ACP outcomes. Discussion Region of birth is associated with the rate and type of ACP uptake for some older Australians. Approaches to ACP should facilitate access to interpreters and be sensitive to diverse preferences for individual and family involvement in ACP.

Assessing the Educational Quality of Facebook Videos as an Informative Resource on Otitis Media

2020 ◽  
pp. 019459982093388
Author(s):  
Chase I. Kahn ◽  
Rita Wang ◽  
Kunal Shetty ◽  
Mikayla J. Huestis ◽  
Michael B. Cohen ◽  
...  
Keyword(s):  
Otitis Media ◽  
English Language ◽  
Treatment Options ◽  
Strong Positive Correlation ◽  
Video Content ◽  
Inclusion Criteria ◽  
Cross Sectional ◽  
Educational Value ◽  
Sectional Analysis

Objective This study analyzes the quality and reliability of otitis media (OM) videos on Facebook and investigates whether the videos shared within the Facebook community are considered to be a valuable educational tool. The results of this study are important for providing clinicians with the necessary understanding about the video content that their patients may be exposed to. Study Design Cross-sectional analysis of video content. Setting A new Facebook account was created to carry out a search for videos on OM. Methods Inclusion criteria were as follows: videos intended for educating patients or guardians on OM, videos in the English language, and videos with at least 1 share. Results A total of 364 videos were screened, and 62 fit our inclusion criteria for analysis. The majority (56%) of OM videos on Facebook focused on complementary and alternative medication without mentioning any current guidelines. A limited amount of videos (29%) made any mention to surgical treatment options for OM. There was a strong positive correlation (rho = 0.8419, P < .001) between a video’s content and its reliability. There was no correlation seen between a video’s content and its shares (rho = −0.142, P = .1359). Conclusions The majority of OM videos on Facebook are inadequate for educational value. Clinicians should know about the existence of videos on OM and the quality of information that parents are exposed to.

Identifying education, knowledge and communication gaps in biomarker testing between YO-CRC patients, caregivers, and their medical team.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e16115-e16115
Author(s):  
Kim Lynn Newcomer ◽  
Danielle Peterson ◽  
Ronit Yarden ◽  
Keyword(s):  
Online Survey ◽  
Medical Information ◽  
Treatment Plan ◽  
Treatment Options ◽  
Stage Iv ◽  
Public Health Issue ◽  
Medical Team ◽  
Cross Sectional ◽  
Patient Reported ◽  
Biomarker Testing

e16115 Background: The proportion of new young-onset colorectal cancer (YO-CRC) cases diagnosed in young people (20-49) had doubled over the past 3 decades, and it is becoming an alarming public health issue. YO-CRC patients face unique clinical challenges, as many are diagnosed at advanced stages of the disease and subjected to aggressive treatments. With the increase of targeted therapies and precision medicine available, NCCN and ASCO guidelines recommend that all stage IV, metastatic CRC patients be tested for 4 biomarkers in addition to MSI-H. However, not all eligible patients benefit from biomarker testing and biomarker-driven therapies. Methods: We conducted an online survey to assess patients, survivors and caregivers’ knowledge and understanding of biomarker testing and whether they feel empowered to discuss with their doctor different treatment options based on their unique tumor characteristics and their preferences. Results: The cross-sectional study was completed by patients and survivors (N = 885) and unrelated caregivers of YO-CRC patients (N = 203). The median age of patients and survivors was 42, and the median age of caregivers was also 42. The majority of the participants were college graduates. Although 82% of stage IV, YO-CRC patients felt informed before treatment began, only 70% indicated their tumor was tested for biomarkers, and 54% of them received biomarker testing before treatment initiation. Only 33% of patients reported they became aware of biomarkers by their medical team while others indicated resources such as internet searches, family and friends, or patient navigators. Many of the caregivers who reported that they served as a liaison between patients and medical information retrieval felt that they did not fully understand the critical aspects of the patients' medical treatment plan. Conclusions: Multiple studies have shown that patient-centered care improves patients’ outcomes. Our organization encourages patients and their families to use medical information to navigate their journey. Our patient-reported study suggests that there are gaps in patients’ and caregiver’s understanding of biomarker testing that may hinder patient's empowerment for reaching evidence-based shared-decision treatment plan together with their physicians.

The Influence of Hypothetical Death Scenarios on Multidimensional End-of-Life Care Preferences

2016 ◽  
Vol 35 (1) ◽  
pp. 52-59 ◽  
Author(s):  
Kara B. Dassel ◽  
Rebecca Utz ◽  
Katherine Supiano ◽  
Nancy McGee ◽  
Seth Latimer
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Treatment Options ◽  
National Sample ◽  
Health Related Quality ◽  
Location Of Death ◽  
Related Quality ◽  
Health Related ◽  
Eol Care

Background: Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. Aim: The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). Design: General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. Setting/Participants: A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. Results: The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants’ multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. Conclusion: Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.

scholarly journals Association Between Training Experience and Attitudes Toward Advance Care Planning Among Healthcare Professionals: A Cross-Sectional Study

2020 ◽  
Author(s):  
Helen Yue-lai Chan ◽  
Annie Oi-ling Kwok ◽  
Kwok-keung Yuen ◽  
Derrick Kit-sing Au ◽  
Jacqueline Kwan-yuk Yuen
Keyword(s):  
Advance Care Planning ◽  
Online Survey ◽  
Healthcare Professionals ◽  
Decisional Conflict ◽  
Cross Sectional Study ◽  
Care Planning ◽  
Training Experience ◽  
Cross Sectional ◽  
Cultural Taboos ◽  
Advance Care

Abstract Background: Training has been found effective in improving healthcare professionals’ knowledge, confidence, and skills in conducting advance care planning (ACP). However, its association with their attitudes toward ACP, which is crucial to its implementation, remained unclear. To fill this gap, this paper examines the association between their attitudes toward ACP and relevant training experiences.Methods: An online survey about attitudes toward ACP of healthcare professionals, including physicians, nurses, social workers, and allied healthcare professionals, currently working in hospital and community care in Hong Kong was conducted.Results: Of 250 respondents, approximately half (51.6%) had received ACP-related training. Those with relevant training reported significantly more positive in the perceived clinical relevance, willingness, and confidence in conducting ACP and levels of agreement with 19 out of the 25 statements in a questionnaire about attitudes toward ACP than those without (ps ≤ 0.001–0.05). Respondents who received training only in a didactic format reported a significantly lower level of confidence in conducting ACP than did others who received a blended mode of learning (p = 0.012). Notwithstanding significant differences between respondents with and without relevant training, respondents generally acknowledged their roles in initiating conversations and appreciated ACP in preventing decisional conflict in surrogate decision-making regardless of their training experience.Conclusions: This paper revealed the association between training and positive attitudes toward ACP among healthcare professionals. The findings showed that training is a predictor of their preparedness for ACP in terms of perceived relevancy, willingness, and confidence. Those who had received training were less likely to consider commonly reported barriers such as time constraints, cultural taboos, and avoidance among patients and family members as hindrances to ACP implementation.

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