Caregiver Challenges Seen From the Perspective of Certified Home Hospice Medical Directors

2021 ◽  
pp. 104990912110563
Author(s):  
Ankita Agarwal ◽  
Sulaiman Alshakhs ◽  
Elizabeth Luth ◽  
Ritchell Dignam ◽  
Manney C. Reid ◽  
...  
Keyword(s):  
Hospice Care ◽  
Financial Burden ◽  
Critical Role ◽  
Terminal Condition ◽  
Home Setting ◽  
Physical Burden ◽  
Hospice Patients ◽  
Medical Directors ◽  
Home Hospice Care ◽  
Eol Care

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants’ responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient’s terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient’s needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs’ expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.

scholarly journals Accounts of Family Conflict in Home Hospice Care: The Central Role of Autonomy for Informal Caregiver Resilience

2019 ◽  
Vol 25 (2) ◽  
pp. 190-218 ◽  
Author(s):  
Jacquelyn J. Benson ◽  
Debra Parker Oliver ◽  
George Demiris ◽  
Karla Washington
Keyword(s):  
Family Conflict ◽  
Health Care Professionals ◽  
Hospice Care ◽  
Secondary Analysis ◽  
Relational Dialectics ◽  
Relational Dialectics Theory ◽  
Hospice Patients ◽  
Stressful Experience ◽  
Home Hospice Care

End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts. Data used in this qualitative secondary analysis were originally collected as part of a randomized clinical trial of an IHC support intervention. Based on thematic analysis of data from 25 IHCs who reported family conflict, a conceptual model of caregiver resilience was developed from the themes and categories that emerged during the coding stage. Autonomy was identified as a central tension. IHCs used several strategies to address family conflict including communication, formal support, and emotional self-care.

Home Hospice Care and the Arts: Arts @ the Bedside

2013 ◽  
Vol 67 (1-2) ◽  
pp. 241-246
Author(s):  
Dayna Wood
Keyword(s):  
New York ◽  
Qualitative Data ◽  
Hospice Care ◽  
Healthcare Settings ◽  
Hospice Volunteers ◽  
The Arts ◽  
Hospice Patients ◽  
Home Hospice Care ◽  
Professional Artists ◽  
The Impact

The arts, in their multiplicity of forms, have shown to be of benefit to patients in healthcare settings and their family members. Benefits can include expression, relaxation, and distraction. Arts @ the Bedside, an initiative of the Visiting Nurse Service of New York Hospice Care, sought to train hospice volunteers with an art background, or interest, to safely and confidently introduce the arts in a variety of mediums to hospice patients and families. Monthly trainings sessions, led by professional artists, were offered to volunteers. Volunteers who participated in six or more trainings received a “Certificate of Completion.” The number of volunteer art visits, session reports, and the impact on volunteers were recorded. Qualitative data suggests that patients, staff, and volunteers gain from the introduction of the arts in home hospice care.

scholarly journals Association Between Nursing Visits and Hospital-Related Disenrollment in the Home Hospice Population

2017 ◽  
Vol 35 (2) ◽  
pp. 316-323 ◽  
Author(s):  
Veerawat Phongtankuel ◽  
Ronald D. Adelman ◽  
Kelly Trevino ◽  
Erika Abramson ◽  
Phyllis Johnson ◽  
...  
Keyword(s):  
Odds Ratio ◽  
Retrospective Cohort ◽  
Hospice Care ◽  
Care Transitions ◽  
Median Number ◽  
P Value ◽  
Medicare Data ◽  
Hospice Patients ◽  
Home Hospice Care ◽  
Patients Experience

Background: Over 10% of hospice patients experience a transition out of hospice care during the last months of life. Hospice transitions from home to hospital (ie, hospital-related hospice disenrollment) result in fragmented care, which can be burdensome for patients and caregivers. Nurses play a major role in delivering home hospice care, yet little is known about the association between nursing visits and disenrollment. Objectives: The study’s purpose is to examine the association between the average number of nursing visits per week and hospital-related disenrollment in the home hospice population. We hypothesize that more nursing visits per week will be associated with reduced odds for disenrollment. Design: A retrospective cohort study using Medicare data. Participants: Medicare hospice beneficiaries who were ≥18 years old in 2012. Outcome measured: Hospitalization within 2 days of hospice disenrollment. Results: The sample included 115 103 home hospice patients, 6450 (5.6%) of whom experienced a hospital-related disenrollment. The median number of nursing visits per week was 2 (interquartile range 1.3-3.2), with a mean of 2.5 (standard deviation ±1.6). There was a decreased likelihood of a hospital-related disenrollment when comparing enrollments that had <3 nursing visits per week on average to 3 to <4 visits (odds ratio [OR] 0.39; P value <.001), 4 to <5 visits (OR 0.29; P value <.001), and 5+ visits (OR 0.21; P value <.001). Conclusions: More nursing visits per week was associated with a decreased likelihood of a hospital-related hospice disenrollment. Further research is needed to understand what components of nursing care influence care transitions in the home hospice setting.

Areas of Control Desired by Patients and Families Referred to Hospice Care: Perspectives of Hospice Admissions Staff

2017 ◽  
Vol 38 (5) ◽  
pp. 656-672 ◽  
Author(s):  
Hyunjin Noh
Keyword(s):  
Hospice Care ◽  
Critical Role ◽  
Well Being ◽  
Future Research ◽  
Illness Trajectory ◽  
Staff Members ◽  
Specific Time Point ◽  
Care Health ◽  
Eol Care ◽  
Time Point

Sense of control in end-of-life (EOL) care plays a critical role in the patient’s well-being. However, little is known about the areas of control essential to patients and families at a specific time point in the illness trajectory: when patients stop curative treatments and are referred to hospice. This study qualitatively explored such areas. Sixteen admissions staff members from four hospice agencies were interviewed about their perceptions of areas in which patients and families worried about losing control by accepting hospice. The thematic analysis revealed four areas of control: changes to medical care, health care provider changes, use of life-sustaining treatments, and daily life. Participants of this study put a great emphasis on consistently communicating their willingness to honor patients’ and families’ control over their care decisions and lives. Future research should examine control in EOL care among diverse populations and effectiveness of hospice staff’s strategies to address desire for control.

scholarly journals The Burden of Having to Wonder: Minority Stress Experiences of LGBTQ+ Hospice Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 357-357
Author(s):  
Kristin Cloyes ◽  
Miranda Jones ◽  
Marilisa Vega ◽  
Megan Hebdon ◽  
Casidee Thompson ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Minority Stress ◽  
Hospice Care ◽  
Background Level ◽  
Support Needs ◽  
Presentation Of Self ◽  
Home Setting ◽  
Stress Theory ◽  
Home Hospice Care

Abstract Home hospice care relies heavily on informal caregivers, often patients’ family and close others. Hospice family caregivers report stress, burden, and unmet support needs associated with poor health and bereavement outcomes. These outcomes are sensitive to the quality of interactions with professional hospice providers, especially for historically marginalized groups, yet little research examines experiences of LGBTQ+ hospice family caregivers. Informed by minority stress theory, we conducted in-depth interviews with LGBTQ+ home hospice family caregivers across the U.S. (N=20). Participants reported demographics and described their caregiving experiences including interactions with hospice providers. Interviews were audio-recorded, transcribed, and content-analyzed. Participants were mostly white (n=15, 75%), non-Hispanic (n=19, 95%), cisgender (n=19, 95%), gender binary (n=19, 95%), lesbian (n=10, 50%), women (n=12, 60%); average age was 52.3 (range 25-67, SD=13.84). Along with known end-of-life caregiving stressors, participants experienced minority stress that complicated caregiver-provider communication. Distal stressors included lack of LGBTQ+ competent resources, inadequate legal protections, providers’ assumptions about relationships, and difficult dynamics with unaccepting relatives. Proximal stressors included perceived risks of disclosure, expectation of poor treatment, feeling the need to modify presentation of self or home, and wondering whether negative provider interactions were due to being LGBTQ+. This generated a background level of uncertainty, caution, and concern that was particularly distressing in the home setting. Minority stress affects LGBTQ+ people across the lifespan and generates added burdens and support needs for hospice family caregivers. Providers who understand these effects are better positioned to deliver safe, effective care to all families 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.

scholarly journals Supporting home hospice family caregivers: Insights from different perspectives

2017 ◽  
Vol 16 (2) ◽  
pp. 209-219 ◽  
Author(s):  
Lee Ellington ◽  
Kristin G. Cloyes ◽  
Jiayun Xu ◽  
Lanell Bellury ◽  
Patricia H. Berry ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Hospice Care ◽  
Critical Role ◽  
Further Education ◽  
Hospice Nurses ◽  
Caregiver Support ◽  
Team Members ◽  
Expert Teaching ◽  
Family Centered ◽  
Thought Leaders

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support.Method:Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups.Results:Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05).Significance of Results:Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

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