Hospice Staff Members Research Articles

Exploring the gender gap in end-of-life care: ethical considerations for dementia patients

Abstract Background Dementia is a common, terminal disease that significantly reduces the quality of life. Home hospice services face ethical challenges when caring for patients in the final stages of the disease. While gender differences are known to exist in various aspects of care, limited research has explored gender variation in end-of-life care perceptions. This study aims to explore how home hospice staff consider gender, particularly regarding ethical issues. Methods The study used a phenomenological qualitative approach, conducting semi-structured interviews with 30 multi-professional home hospice staff members caring for dementia patients. Findings Caregivers tend to ignore gender when caring for elderly patients at the end of their lives. This non-gender-related approach is evident in their attitudes towards ethical issues, such as respecting patients, considering their welfare and dealing with communication difficulties. However, disregarding gender when caring for dementia patients within the home hospice framework raises questions regarding the dying person's perception of human dignity, their wishes, and their overall welfare. Conclusions Given that gender is a crucial component of a person's identity, the staff's non-gender-related approach towards end-of-life care reflects the non-gender-related social construction of the elderly. This raises concerns about the quality of care provided to end-of-life patients. To ensure that patients’ dignity is preserved in the final stages of their lives, it is necessary to provide training for caregiving staff on the importance of considering gender in end-of-life palliative care. Key messages • Home hospice staff tend to ignore gender when caring for dementia patients. Neglecting gender raises ethical concerns and questions about patient dignity and welfare. • Considering gender in end-of-life palliative care is crucial to ensure high-quality care for patients with dementia in the final stages of their lives.

New Zealand hospice staff perspectives on 'Xcellent Gowns' for big bodied palliative care patients: a qualitative study.

Introduction A handful of reports detail efforts to redesign traditional hospital gowns to address common concerns related to patient comfort and privacy for big bodied patients. Results suggest that improving gown design has the potential to improve both the patient and carer experience and satisfaction of care. Aim This study aimed to ascertain the utility of gowns purposely designed for big bodied patients (named Xcellent Gowns) from a staff perspective. Methods Qualitative semi-structured interviews were conducted in 2022 with 14 hospice staff members. Interview transcripts were uploaded to DedooseTM . Data were analysed utilising reflexive thematic analysis according to a six-phase process including data familiarisation, iterative data coding, and theme development and refinement. Results The qualitative analysis of the interview data identified four main themes: (1) the gown experience, (2) fit-for-purpose, (3) love and dignity, (4) design principles. Each theme is presented and discussed with illustrative quotes from participants' interview transcripts. Discussion The perspectives of the staff participants in this study confirm research findings from other healthcare settings, that the patient and carer experience may be improved through focused redesign of this vital item of patient clothing.

Toward a Practice-Informed Agenda for Hospice Intervention Research: What Are Staff Members' Biggest Challenges?

The translation of evidence-based interventions into routine hospice care is impeded by numerous barriers, including a disconnect between research priorities and clinical care. To inform the development of a more practice-informed agenda for hospice intervention research, our team conducted a qualitative descriptive study, posing the following research questions: 1) How do hospice staff members describe their most significant work-related challenges? and 2) What regulatory changes do hospice staff members report would most improve hospice care? To answer these research questions, we interviewed 22 hospice staff members and then conducted a template analysis of the interview content. In doing so, we identified themes that described challenges in 5 key areas: time, documentation, professional roles, recruitment and retention, and burn-out. In addition, we identified a perceived need among hospice staff members for more regulatory flexibility and clarity. Based on our findings, we conclude that a practice-informed agenda for hospice intervention research includes the development and testing of interventions that increase efficiency, explicitly speak to the humanity of hospice care, and elevate the roles of all members of the interdisciplinary team.

Reflections of Hospice Staff Members About Educating Hospice Family Caregivers Through Telenovela.

Hospice family caregivers are seeking additional information related to patient care, pain and symptom management, and self-care. This study interviewed hospice staff about the potential dissemination of bilingual telenovelas to address these caregiver needs. Qualitative structured phone interviews were conducted with 22 hospice professionals from 17 different hospice organizations in 3 different Midwest states. The interviews were conducted from October to December 2019. Hospice staff volunteers were recruited from conferences, then individual interviews were audio-recorded, transcribed, and thematic analysis was conducted to gain an in-depth understanding of how to best implement telenovela video education into hospice care. Most participants were hospice nurses (36%) located primarily in Missouri (91%), with a mean of 9 years of experience. Three discrete themes emerged, the educational resources currently provided to patient/families, perceptions of the usefulness of telenovelas for education, and practical suggestions regarding the dissemination of telenovelas. The development of 4 telenovela videos covering different topics is described. Hospice staff responded favorably to the concept of telenovelas and identified important keys for dissemination.

A Survey of Hospice Professionals Regarding Medical Cannabis Practices.

Introduction: With medical cannabis (MC) remaining illegal at the federal level, hospice programs are unsure how to handle requests for MC, particularly since hospice is largely funded with federal dollars. The purpose of this survey was to determine respondents' comfort level with MC use in hospice, what processes and logistics hospice programs are employing when dealing with MC, and to determine what, if any, education hospice programs are providing to their staff. Methods: An anonymous online survey assessed a variety of factors surrounding hospice staff practice, experience, and opinions regarding MC. The survey was disseminated to employees of clients of a large hospice benefit manager as well as through a national hospice and palliative medicine professional organization. Results: Three hundred ten hospice professionals responded to the survey. More than half of the respondents were nurses followed by administrators and physicians. Regardless of legal status, hospice staff members were overwhelmingly in agreement that MC is appropriate for hospice patients to have access to and use. Several barriers to use were identified including discordant legal status between state and federal governments, concerns about clinical efficacy and safety, and a myriad of other societal factors. Wide variations in MC documentation and education practices between hospices were noted. Discussion: The data suggest overwhelming support for MC use in the hospice setting. Our findings highlight important opportunities to support hospice providers and their patients through education and the development of policies around MC.

End of Life Care for Older Russian Immigrants - Perspectives of Russian Immigrants and Hospice Staff.

This pilot study examined immigrant Russian seniors and adult children's views on end-of-life care, and hospice staff members' experiences providing care to diverse immigrant clients, in areas of North Carolina with a high proportion of immigrants. Data were collected through individual in-depth interviews with informants, including Russian immigrant seniors, Russian adult children, and hospice staff, and analyzed by qualitative techniques. Findings indicate that there is little awareness of end-of-life care options among the Russian immigrant community in North Carolina. End-of-life care is rarely discussed within the family of first generation Russian immigrants but second-generation families are more open to doing so. First generation immigrant Russian seniors in our study do not seem to want any specialized end-of-life care often due to lack of awareness, and prefer family care. Second generation seniors' attitudes are more accepting of this type of care. Hospice staff serve all those who seek care, receive training to serve diverse clients, and prioritize professional policies. There is sometimes potential for a gap between hospice policies regarding care and immigrant families' expectations for care. Results suggest a great need for community outreach to immigrant groups to raise awareness of end-of-life care, including advance directives and hospice care and the role of interpreters in health care settings.

Witnessing a body in decline: Men’s and women’s perceptions of an altered physical appearance

ABSTRACTThere has been a tendency within the literature to ignore how men and women who are very ill and at the end of life perceive and experience their visibly altered bodies. This article aims to provide new insights about this matter. A qualitative research approach was adopted. In-depth interviews were conducted with 10 hospice patients, 20 family members, and 20 members of hospice staff. Findings reveal that because of masculine and feminine norms, physical appearance is more a matter of concern to women than to men who are close to death. This contradicts theories that suggest that patients experience a disinvestment on their sense of masculinity and femininity alongside the process of bodily deterioration and decay prior impending potential death.

In-patient hospice: A qualitative study with Portuguese patients, family and staff

ABSTRACTThe present study aims to provide insights on the role of in-patient hospices, which are sometimes described as disconnecting spaces. Researchers complement participant observation with in-depth interviews with 10 hospice patients, 20 family members, and 20 members of hospice staff. The findings suggest that the hospice provides a space where patients could enjoy the company of their loved ones without concerns regarding the dying process. The study reveals that the hospice offers a proper alternative to the home setting even in countries characterized by a strong familialistic culture like Portugal.

A multimethod analysis of shared decision-making in hospice interdisciplinary team meetings including family caregivers

Background: Much of the existing research on shared decision-making in hospice and palliative care focuses on the provider–patient dyad; little is known about shared decision-making that is inclusive of family members of patients with advanced disease. Aim: We sought to describe shared decision-making as it occurred in hospice interdisciplinary team meetings that included family caregivers as participants using video-conferencing technology. Design: We conducted a multimethod study in which we used content and thematic analysis techniques to analyze video-recordings of hospice interdisciplinary team meetings (n = 100), individual interviews of family caregivers (n = 73) and hospice staff members (n = 78), and research field notes. Setting/participants: Participants in the original studies from which data for this analysis were drawn were hospice family caregivers and staff members employed by one of five different community-based hospice agencies located in the Midwestern United States. Results: Shared decision-making occurred infrequently in hospice interdisciplinary team meetings that included family caregivers. Barriers to shared decision-making included time constraints, communication skill deficits, unaddressed emotional needs, staff absences, and unclear role expectations. The hospice philosophy of care, current trends in healthcare delivery, the interdisciplinary nature of hospice teams, and the designation of a team leader/facilitator supported shared decision-making. Conclusion: The involvement of family caregivers in hospice interdisciplinary team meetings using video-conferencing technology creates a useful platform for shared decision-making; however, steps must be taken to transform family caregivers from meeting attendees to shared decision-makers.

Making sense of a changed physical body: Why gender matters at end of life

The bodily experience of patients near end of life has been presented within sociological literature as largely undifferentiated. The attempt of this paper is to overcome this gap by exploring how gender intersects with the loss of bodily autonomy experienced by hospice patients. The study was conducted in two in-patient hospice units located near Lisbon, the capital of Portugal. A total of ten terminally ill patients were interviewed, along with twenty family members and twenty members of hospice staff. For the men in this study loss of bodily autonomy was a very dramatic experience as it contravened masculine norms. The women's reactions towards their loss of autonomy were less negative compared to those of men and they made a considerable effort to integrate the best as they could their physical condition. This reflected feminine traits. Findings suggested that the loss of bodily autonomy is gendered in the sense that men and women experience it in dissimilar ways.

How hospice staff members prepare family caregivers for the patient’s final days of life: An exploratory study

Background: There is widespread agreement that the families of hospice patients need to be prepared for the final days of life, yet current practices preparing families are not well described. Examining the gap between family needs and current practice will inform the development of effective preparatory interventions. Aim: The purpose of the study was to describe how hospice clinicians prepare family for the final days of life, including (1) the content of the preparatory information, (2) strategies and timing of preparation, and whether the preparation is tailored, and (3) who prepares families. Design: Conventional content analysis guided this study. Individual interviews using semi-structured questions were conducted. Setting/participants: In all, 19 hospice clinicians who provided care in the home setting from two hospice agencies in the United States participated. Results: Preparatory messages included information on signs of impending death, symptoms, implications of the symptoms, what to expect next, and instructions on what to do. Commonly used strategies included listening, engendering trust, repetition, collaboration with other disciplines, and demonstrations. Staff tailored content and delivery of messages on patient, family, and hospice factors. Preparation usually occurred over time. All hospice staff provided preparatory information, but there are some differences by discipline. Conclusions: Most content previous identified as necessary for preparedness is part of the current preparation. The knowledge of the current practice in preparing families can be used to develop systematic means of assessing the factors related to timing and tailoring, which may assist in developing preparatory messages that are effective and timely.

P74 Tears at the wedding

BackgroundA diagnosis of cancer can mean that the ‘taken for granted’ future is disrupted which impacts on self-image and social roles. People may strive to contribute to a meaningful life...

Hospice Staff Perspectives on Dignity Therapy

Dignity Therapy is a brief psychotherapy performed with patients at the end of life. Previous research has examined the effects of Dignity Therapy with patients and family, but none has examined hospice staff perceptions of the treatment. The study objective was to investigate hospice staff perspectives regarding the impact and value of Dignity Therapy when provided as a clinical service. Eighteen hospice staff members who referred patients for Dignity Therapy were asked to rate the value of the treatment. The staff also completed qualitative interviews to gather more detailed information about their most common reasons for referral; their perspectives regarding the therapy's impact on patients; and their beliefs about the costs, benefits, and barriers to treatment. The staff interview responses were qualitatively analyzed to measure the most common emergent themes. Hospice staff members rated Dignity Therapy as worthwhile, and somewhat able to reduce patients' pain and suffering. The vast majority (92%) of hospice staff members believed the treatment would help patients' families in the future, and 100% reported a desire to recommend the treatment to others. Qualitative analyses revealed that staff commonly viewed Dignity Therapy as a positive, affirming experience for patients and felt the emotional or time requirements of the treatment were justified. As a result of offering the service, the staff noted an increased connection with patients and related increases in job satisfaction. Hospice staff believe Dignity Therapy is a worthwhile service that offers a positive, quality-enhancing experience for patients at the end of life. The addition of this clinical service may further enhance staff members' job satisfaction and connection with patients. These findings provide useful information for clinicians or organizational leaders who consider offering Dignity Therapy in their setting.

LEAP OF FAITH?

This article is based on research undertaken for the degree of Doctor of Ministry. Its focus is the investigation of two phenomena raised by members of hospice staff as impediments to the delivery of spiritual care. These are the problems of discerning the spiritual aspect of interventions with patients, and the apprehension staff feel in being faced with the prospect of meeting those needs for which they consider themselves unprepared. These two phenomena were tested by sharing with staff, six pastoral conversations and recording the degree to which they were able to pick up the spiritual content of the conversation. The research discovered that staff, although highly motivated, do not always have the confidence or the knowledge to address the spiritual needs of patients at an appropriate level of sophistication.

Profit Status and Delivery of Hospice Care for Infants: The Mediating Role of Pediatric Knowledge

Infant mortality is a persistent problem in the United States, and yet, hospice care is rarely provided for infants at the end of life. To examine the influence of profit status on delivery of hospice care for infants, and to explore the mediating role of pediatric knowledge (pediatric program and pediatric knowledge) on the relationship between profit status and the delivery of infant care. Our study was a cross-sectional secondary analysis, using data from the 2008 California State Utilization Data File of Home Health Agencies and Hospice Facilities survey. Of the hospices in the sample, 13% delivered care for infants. Nonprofit hospices were more likely to delivery care for infants (B=0.67, p<0.05), have a specialized pediatric program (B=0.85, p<0.05) and have more experience caring for pediatric patients (B=1.49, p<0.05). Regarding the mediator variables, hospices with a pediatric program were no more likely to deliver care to infants than hospices without a pediatric program (B=0.82, p>0.05). Experience with greater numbers of any pediatric patients facilitated the delivery of hospice infant care in nonprofits (B=0.86, p<0.05). Hospices may need to explore ways to direct resources toward assisting hospice staff members in gaining pediatric experience.

Sex, drugs and the role of the ethics committee in hospices for children and young adults

<h3>Aims</h3> The concept of institutional ethics committees was born at least in part from difficulties faced making decisions at the end-of-life1. Our Hospice developed such a committee in 2004, prompted by the increasingly complex nature of the issues faced by clinical staff. The Committee comprises hospice staff and external members including legal and academic representation. Its terms of reference2 are broadly: ‘to provide guidance to staff and trustees when ethical issues make the course of action unclear, by: ▶Development of standards and guidelines. ▶Education of staff to enhance ethical decision making. ▶Ethical decision making on issues from allocation of resources to the referral process and aspects of care9. This study explores the value of a clinical ethics committee in a children9s and young adults9 hospice setting, and assess how far this committee has achieved its aims. <h3>Methods</h3> Data was collected retrospectively by analysing the minutes of the Committee9s meetings and relating this to its terms of reference. <h3>Results</h3> Thirty six regular quorate minuted meetings have taken place since 2004. Additionally, two extra-ordinary meetings were called. There has been a wide variety of topics on the agenda, covering actual dilemmas for the Care Team (see figure 1), and scenarios (see figure 2). Twelve research projects were assessed (2/3 from external researchers, 83% qualitative research). Five guidelines and one policy statement were agreed (see table 1). Issues relating to education were addressed directly in eight (22%) meetings. <h3>Conclusions</h3> The Committee meets regularly with good attendance, and a wide range of subject matter was submitted, with issues relating to sexuality and alcohol represented alongside more conventional palliative care topics. Significant work has also been contributed to the development of standards and guidelines. Having met two of its stated objectives, the next step for our committee will be furthering the educational impact for the institution as a whole, particularly as the literature on the benefits of such committees highlights the benefits of the educational role.13

Volunteers as Facilitators of Communication About Pain

Often unskilled for the hospice caregiving role, family members who provide patient care at home need support to facilitate pain management. Volunteers who serve as members of the hospice team may be able to complement staff efforts to discuss pain with caregivers. A pilot project was developed to determine if volunteers could be trained to facilitate communication about pain with family caregivers. Two hospice volunteers were trained and three family caregivers received the intervention in their homes. Caregivers and volunteers were interviewed about the experience. Both caregivers and volunteers reported a rewarding and positive experience. Caregivers prioritized the need to talk with someone, and volunteers preferred working with caregivers instead of administrative support duties. Volunteers could be trained to deliver the intervention material, but information from volunteer visits was not immediately reported to hospice staff members. Future research should assess the benefits of using hospice volunteers to support clinical efforts.

‘They’re part of the team’: participant evaluation of the ACTIVE intervention

This study used participant feedback to qualitatively evaluate an intervention (Assessing Caregivers for Team Intervention through Videophone Encounters [ACTIVE]) that used videophone technology to include patients and/or their family caregivers in hospice interdisciplinary team meetings. Data were generated during individual interviews with hospice staff members and family caregivers who participated in ACTIVE intervention. Modified grounded theory procedures served as the primary analysis strategy. Results indicated that ACTIVE intervention enhanced team functioning in terms of context, structure, processes and outcomes. Participants discussed challenges and offered corresponding recommendations to make the intervention more efficient and effective. Data supported the ACTIVE intervention as a way for hospice providers to more fully realise their goal of maximum patient and family participation in care planning.

Uncovering Beliefs and Barriers: Staff Attitudes Related to Advance Directives

Although the 1990 Patient Self-determination Act was enacted to insure that patients' wishes regarding advance directives were known and respected, it has had little impact in quality or aggressiveness of care for patients nearing death. The purpose of this descriptive study was to explore staff attitudes related to Advance Directives. A short survey was distributed to 650 hospital, home care, hospice, assisted living, and long term professional and staff members. Analysis was completed on 413 surveys (return rate 63.3%). Findings suggest that although staff members believe that Advance Directives are an important tool, they have found both logistical and process challenges to following them. The results provide needed information for improving processes for completion and utilization of Advance Directives.

Quality of Life at the End of Life for Nursing Home Residents: Perceptions of Hospice and Nursing Home Staff Members

This study examined whether the perceptions of nursing staff members about the importance of quality-of-life domains and their perceived ability to influence those domains for residents at the end of life were affected by their institutional affiliation, level of training, or residents' cognitive status. Respondents were 146 Certified Nursing Assistants (CNAs) and Registered Nurses (RNs) from nursing homes and hospices. Magnitude estimation scales were used to rate the importance of and perceived ability to influence 11 quality-of-life domains for both cognitively intact and cognitively impaired residents. Overall, respondents' scores indicated a high level of importance of all quality-of-life domains and similarly positive perceptions that they could influence quality-of-life domains for hypothetical nursing home residents. Analysis of variance revealed that respondents reported lower average importance and ability to influence ratings when considering residents with cognitive impairment. Respondents affiliated with hospice agencies also reported lower average importance and ability to influence ratings on some domains, although the high ratings overall limit the clinical significance of these differences. Importance ratings were not affected by the level of education, but CNAs reported higher perceived ability to influence ratings on four domains than did RNs. Future studies should explore whether the domains measured adequately capture the end-of-life experience in nursing homes.