“It’s Like a Death Sentence but It Really Isn’t” What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

Tate, Channing E.; Venechuk, Grace; Brereton, Elinor; Ingle, Pilar; Allen, Larry A.; Morris, Megan A.; Matlock, Daniel D.

doi:10.1177/1049909119897259

Cited by 6 publications

(8 citation statements)

References 34 publications

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“…We chose this approach because research indicates that patients and families want to engage in end-of-life conversations well before times of crisis. 7,33,34,46 Our goal was to provide information and facilitate conversations well before the emotion, distress, and urgency of end-of-life decision-making occurred during times of crisis. Our study found that our decision aid was neutral and not biased toward enrolling or not enrolling in hospice care and that 97% of patients found our PtDA helpful in making decisions about hospice.…”

Section: Discussionmentioning

confidence: 99%

“…[4][5][6] Additionally, bereaved family and caregivers often report wishing they had engaged hospice services much sooner to provide care for their loved ones. 7,8 Many clinicians and patients are misinformed about hospice care and its services, leading to underuse and late referrals which further complicates this issue. 7,9 Prior research shows there is a strong desire for patients and families to engage in conversations about hospice well before times of crisis, 7,[10][11][12] but many physicians are reluctant to initiate these difficult conversations and prefer for patients and families to initiate conversations.…”

Section: Introductionmentioning

confidence: 99%

“…21,22 Our prior work included a needs assessment to determine what information patients and families needed to make informed hospice decisions. 7 Next we developed a hospice specific PtDA to support these complex conversations. 7,8,10 Herein, we report pilot data evaluating whether a hospice PtDA can improve hospice knowledge, opinions of hospice care, and decision self-efficacy in two unique cohorts of participants.…”

Section: Introductionmentioning

confidence: 99%

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Evaluation of a Novel Hospice-Specific Patient Decision Aid

Tate,

Mami,

McNulty

et al. 2023

Am J Hosp Palliat Care

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Background: We tested a novel hospice-specific patient decision aid to determine whether the decision aid could improve hospice knowledge, opinions of hospice, and decision self-efficacy in making decisions about hospice. Methods: Two patient-level randomized studies were conducted using two different cohorts. Recruitment was completed from March 2019 through May 2020. Cohort #1 was recruited from an academic hospital and a safety-net hospital and Cohort #2 was recruited from community members. Participants were randomized to review a hospice-specific patient decision aid. The primary outcomes were change in hospice knowledge, hospice beliefs and attitudes, and decision self-efficacy Wilcoxon signed rank tests were used to evaluate differences on the primary outcomes between baseline and 1-month. Participants: Participants were at least 65 years of age. A total of 266 participants enrolled (131 in Cohort #1 and 135 in Cohort #2). Participants were randomized to the intervention group (n = 156) or control group (n = 109). The sample was 74% (n = 197) female, 58% (n = 156) African American and mean age was 74.9. Results: Improvements in hospice knowledge between baseline and 1-month were observed in both the intervention and the control groups with no differences between groups (.43 vs .275 points, P = .823). There were no observed differences between groups on Hospice Beliefs and Attitudes scale (3.29 vs 3.08, P = .076). In contrast, Decision Self-Efficacy improved in both groups and the effect of the intervention was significant (8.04 vs 2.90, P = −.027). Conclusions: The intervention demonstrated significant improvements in decision self-efficacy but not in hospice knowledge or hospice beliefs and attitudes.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Evaluation of a Novel Hospice-Specific Patient Decision Aid

Tate,

Mami,

McNulty

et al. 2023

Am J Hosp Palliat Care

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“…Wicher et al summarized that the knowledge of hospice care would influence its preference at the EOL stage among African Americans [36]. However, the lack of understanding of hospice care is pervasive among patients and their families [34,[37][38][39][40][41][42]. Therefore, more efforts should be made in increasing the awareness of hospice care among patients with life-threatening illnesses and their families.…”

Section: Discussionmentioning

confidence: 99%

Hospice preference of the family decision-makers for cancer patients in China: an exploratory study

2022

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Background The reasons for hospice underuse in China need 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 for 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 for healthcare when the patient was at the end-of-life stage was completed. Descriptive analysis, t-test, chi-square test, and multivariable logistic regression were conducted to analyze the data. Results Only 46.0% of the participants have heard of hospice care. Most participants (78.2%) reported no introduction to hospice care from their doctors. More than half of the participants (58.2%) did not have a preference for 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 preferring healthcare at the end-of-life stage (adjusted 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 (adjusted 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 (adjusted 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 patients’ families. Additionally, the impact of the at-home care burden on the hospice choice of families with cancer patients requires further study.

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“…None of the portals included in the review offered features addressing grief and bereavement or information about hospice or comfort care. Despite the evidence supporting the benefits of hospice care [ 60 - 62 ], lack of information and understanding remains one of the most common barriers to hospice use [ 63 - 65 ]. Furthermore, bereaved individuals and families often benefit from educational resources related to the grief process [ 66 ].…”

Section: Discussionmentioning

confidence: 99%

Patient Portals to Support Palliative and End-of-Life Care: Scoping Review

Ingle¹,

Valdovinos²,

Ford³

et al. 2021

J Med Internet Res

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Background Although patient portals are widely used for health promotion, little is known about the use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers. Objective This study aims to identify and assess the user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature. Methods We performed a scoping review of the academic literature directed by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) extension for Scoping Review and searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention; focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care; targeted adults with serious illness or caregivers; and were offered via a patient portal tethered to an electronic medical record. We independently screened the titles and abstracts (n=796) for eligibility. Full-text (84/796, 10.6%) sources were reviewed. We abstracted descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool from included sources (n=19). Results In total, 19 articles describing 12 tools were included, addressing the following PCEOL domains: ethical or legal (n=5), physical (n=5), and psychological or psychiatric (n=2). No tools for bereavement or hospice care were identified. Studies have reported high acceptability of tools among users; however, few sources commented on usability among older adults. Conclusions PCEOL patient portal tools are understudied. As medical care increasingly moves toward virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portal resources and evaluate their impact on health outcomes.

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“It’s Like a Death Sentence but It Really Isn’t” What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

Cited by 6 publications

References 34 publications

Evaluation of a Novel Hospice-Specific Patient Decision Aid

Evaluation of a Novel Hospice-Specific Patient Decision Aid

Hospice preference of the family decision-makers for cancer patients in China: an exploratory study

Patient Portals to Support Palliative and End-of-Life Care: Scoping Review

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