Challenges and facilitators of hospice decision-making: a retrospective review of family caregivers of home hospice patients in a rural US–Mexico border region—a qualitative study

Ko, Eunjeong; Fuentes, Dahlia; Singh-Carlson, Savitri; Nedjat-Haiem, Frances R.

doi:10.1136/bmjopen-2019-035634

Cited by 7 publications

(10 citation statements)

References 45 publications

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“…Using these four themes, we constructed an individualised hospice service delivery model. Consistent with previous the research, 5 the HIC provides expert symptom management for acutely symptomatic hospitalised patients. Patients with the highest level of distress and complexity benefit from admission to the HIC units.…”

Section: Discussionsupporting

confidence: 69%

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Hospice delivery models and survival differences in the terminally ill: a large cohort study

Lai

Liu

Tsai

et al. 2021

BMJ Support Palliat Care

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ObjectiveA common difficulty at the end of life (EOL) is to determine an appropriate service model, such as hospice share care (HSC), hospice inpatient care (HIC) and hospice home care (HHC). This study aimed to recommend the appropriate hospice delivery model based on the physical, psychosocial and spiritual needs of patients referred for hospice care.MethodsThis cohort study included patients who received only one kind of hospice delivery model between 2006 and 2020. Data were analysed with descriptive statistics, Fisher’s exact test, non-parametric analysis of variance, Kaplan-Meier curves and Cox proportional hazards model that determined the patients’ clinical characteristics for a hospice delivery model and overall survival.ResultsA total of 8874 hospice patients were recruited, of which 7076 (79.7%) were HSC patients, 918 (10.4%) were HIC patients and 880 (9.9%) were HHC patients. There were significant differences in the physical symptoms and demographic, psychosocial and spiritual factors among the three groups (p<0.001). The patients who received the HHC were less to have dyspnoea (18.5%) and dysphagia (28.7%). The HIC patients showed higher severity of symptoms and experienced greater psychosocial distress (73.2%). The HSC is appropriate for noncancer patients . Patients with cancer were associated with less dyspnoea (32.4%) and dysphagia (46.5%). Patients with lung cancer who received the HHC had better survival than those who received other types of hospice care (HR=0.75, 95% CI: 0.66 to 0.86, p<0.001).ConclusionsThis study provides guidance regarding the appropriate hospice service model, based on individualised palliative needs, targeting improvement in EOL care.

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Section: Discussionsupporting

confidence: 69%

“…Pain was assessed on a scale from 0 to 10 (0: none; 10: worst possible pain). These scores were grouped into low (0-3), moderate (4)(5)(6) and high (7-10) categories. Other symptoms, such as dyspnoea, nausea, constipation and dysphagia, were also evaluated (0: none; 4: worst possible symptoms).…”

Section: Data Collectionmentioning

confidence: 99%

Hospice delivery models and survival differences in the terminally ill: a large cohort study

Lai

Liu

Tsai

et al. 2021

BMJ Support Palliat Care

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“…Hispanic/Latino patients residing in rural areas encounter various challenges in accessing and utilizing healthcare resources, including palliative/hospice care programs and trained palliative care specialists, often leaving cancer patients with limited opportunities to plan ACP and receive palliative/hospice care (Virnig et al, 2006; Lynch, 2012; Ko et al, 2020). Residing in a border town, proximity to country of origin (Mexico), cultural beliefs, and values that permeate the community may influence their ACP perspectives.…”

Section: Introductionmentioning

confidence: 99%

Rural Hispanic/Latino cancer patients’ perspectives on facilitators, barriers, and suggestions for advance care planning: A qualitative study

Keeney

Higgins

et al. 2021

Pall Supp Care

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Objective Hispanic/Latinos living in rural areas have limited healthcare resources, including palliative and hospice care. Moreover, little is known about advance care planning (ACP) among Hispanic/Latino cancer patients in rural areas. This study explores facilitators and barriers for ACP. It elicits suggestions to promote ACP among rural Hispanic/Latino cancer patients in a US/Mexico border region. Methods Hispanic/Latino cancer patients (n = 30) were recruited from a nonprofit cancer organization. Data were collected via in-person interviews. Interviews were transcribed and translated from Spanish to English. Data were uploaded into NVivo 12 and analyzed using thematic analysis. Results A common theme for facilitators and barriers for ACP was safeguarding family. Additional facilitators included (1) Desire for honoring end-of-life (EoL) care wishes and (2) experience with EoL care decision making. Additional barriers include (1) Family's reluctance to participate in EoL communication and (2) Patient–clinicians’ lack of EoL communication. Practice suggestions include (1) Death education and support for family, (2) ACP education, and (3) Dialogue vs. documentation. Significance of results ACP functions not only as a decisional tool; its utility reflects complex dynamics in personal, social, and cultural domains. ACP approaches with this underserved population must consider family relationships as well as cultural implications, including language barriers.

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“…The ndings indicate that cancer patients and their families may not consider the healthcare option at the EOL stage, even when the patient is at the advanced stage of cancer. EOL stage communication between the healthcare providers and the patients and their families is critical to initiate the family's consideration of their EOL stage care plan [25,26]. However, inadequate communication about prognosis, treatment choices, and healthcare options is common among patients with an advanced illness [27,28], which contributes to unrealistic expectations of the patients and their families regarding curability and delayed enrollment in hospice care [25,29,30].…”

Section: Discussionmentioning

confidence: 99%

“…Families need communication with their healthcare providers to help them understand the progression of the patients, what to expect, and available options for care [31]. Good EOL stage communication could facilitate the hospice decision of patients and their families [25]. A greater exploration of EOL stage communication between healthcare providers and families with cancer patients in China is thus needed in the future.…”

Section: Discussionmentioning

confidence: 99%

Hospice preference among families with cancer patients in China: An exploratory study

Yao

Chen

Lai

2022

Preprint

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Background: The reasons for hospice underuse in China needs exploration from the perspective of patients with cancer and their families. Furthermore, existing literature about hospice decision-making among Chinese families with cancer patients is limited. This study aimed to investigate the awareness of hospice care among families with cancer patients, their preference of healthcare at the end-of-life stage of care, and the predictors of hospice preference.Methods: This was an exploratory study conducted between July 2021 and January 2022. Overall, 300 decision-makers of cancer patients were recruited from the oncology ward of seven hospitals in Shanghai, China. Of these, 285 valid responses were included in the data analysis. A self-developed questionnaire about their preference of healthcare when the patient was at the end-of-life stage was completed. Descriptive analysis, t-test, chi-square test, and logistic regression were conducted to analyze the data.Results: Only 29.7% of the participants had heard of hospice care. Most participants (78.2%) reported no introduction of hospice care from their doctors. More than half of the participants (58.2%) did not have a preference of healthcare at the end-of-life stage. Seventy-eight (65.5%) of the 119 participants who had a preference chose hospice care, and the other 41 participants (34.5%) refused hospice care. Having heard of hospice care had a significant impact on having a preference for healthcare at the end-of-life stage (OR=14.346, 95%CI 7.219-28.509, p<0.001). Not being sure whether the doctor introduced hospice care before had a significant impact on having no preference for healthcare at the end-of-life stage (OR=0.180, 95%CI 0.052-0.617, p=0.006). Another family member being cared for at home had a significant impact on the participants’ hospice preference (OR=2.739, 95%CI 1.159-6.470, p=0.022).Conclusion: The end-of-life communication between healthcare providers and the families of cancer patients is insufficient. More efforts should be made in increasing the awareness of hospice care among patients with cancer and their families. Further study is needed to explore the reasons for a lack of discussion on hospice options between healthcare providers and the families. Additionally, the impact of at-home care burden on the hospice choice of families with cancer patients requires further study.

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Challenges and facilitators of hospice decision-making: a retrospective review of family caregivers of home hospice patients in a rural US–Mexico border region—a qualitative study

Cited by 7 publications

References 45 publications

Hospice delivery models and survival differences in the terminally ill: a large cohort study

Hospice delivery models and survival differences in the terminally ill: a large cohort study

Rural Hispanic/Latino cancer patients’ perspectives on facilitators, barriers, and suggestions for advance care planning: A qualitative study

Hospice preference among families with cancer patients in China: An exploratory study

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