Clinician Communication in Hospice: Constructions of Reality Throughout the End-of-Life Process.

The current study examined qualitative data from hospice clinicians' perspectives on language, surrounding end-of-life (EOL), to understand challenges and opportunities for constructing a trajectory of communication leading towards a good death experience. Findings from two focus groups with nine clinicians' and 12 individual interviews, four of which were follow up interviews after the focus groups, were guided by framework analysis and revealed three themes, constructing language choices, roles and responsibilities, and socio-cultural considerations. We used the Opportunity Model for Presence during the End-of-Life Process (OMP-EOLP) to make sense of the findings and discuss implications for language use throughout the EOL process. We argue additional efforts should be made in recognizing the value of presence checks, re-constructing advance care planning, and utilizing different forms of media as an educational tool and connection mechanism for clinicians with patients and families to achieve a timely engagement of EOL conversations for all healthcare participants.

Problem-solving skills training in adult cancer survivors: Bright IDEAS-AC pilot study.

PURPOSE: Cancer patients experience significant distress and burden of decision-making throughout treatment and beyond. These stressors can interfere with their ability to make reasoned and timely decisions about their care and lead to low physical and social functioning and poor survival. This pilot study examined the impact of offering Problem-Solving Skills Training (PSST) to adult cancer survivors to help them and their caregivers cope more successfully with post-treatment decision-making burden and distress. PATIENTS AND METHODS: Fifty patients who completed their definitive treatment for colorectal, breast or prostate cancer within the last 6 months and reported distress (level > 2 on the National Comprehensive Cancer Network distress thermometer) were randomly assigned to either care as usual (CAU) or 8 weekly PSST sessions. Patients were invited to include a supportive other (n = 17). Patient and caregiver assessments at baseline (T1), end of intervention or 3 months (T2), and at 6 months (T3) focused on problem-solving skills, anxiety/depression, quality of life and healthcare utilization. We compared outcomes by study arm and interviewed participants about PSST burden and skill maintenance. RESULTS: Trial participation rate was 60%; 76% of the participants successfully completed PSST training. PSST patients reported reduction in anxiety/depression, improvement in QoL (p < 0.05) and lower use of hospital and emergency department services compared to CAU patients (p = 0.04). CONCLUSIONS: The evidence from this pilot study indicates that a remotely delivered PSST is a feasible and potentially effective strategy to improve mood and self-management in cancer survivors in community oncology settings.

Attitudes and Perceptions of End-of-Life Dreams and Visions and Their Implication to the Bereaved Family Caregiver Experience.

BACKGROUND: While the majority of research assesses the impact of end-of-life dreams and visions (ELDVs) on patients, more recent research has begun to explore their impact on family caregivers (FCG). OBJECTIVE: This study evaluates the relationship between general attitudes about dreams, perspectives of ELDV and their role the bereaved FCG experience. DESIGN: Mixed-methods using a cross-sectional survey and five focus groups. SETTINGS/SUBJECTS: A total of 500 FCGs of patients who died under hospice care were recruited for the survey. Focus group members were self-selected through identified interest from the survey. MEASUREMENTS: In addition to demographics and ELDV prevalence, general attitude toward dreams, ELDV perspectives, and impact on grief were assessed using ad hoc surveys. RESULTS: Participants reporting ELDVs were significantly more validating of everyday dreams (p < .001). Positive attitudes toward dreams strongly correlated with comfort from ELDVs for both patients and FCGs. Openness correlated positively with comfort from the ELDV for both the patient (r = .149, p = .038) and FCG (r = .217, p = 0.002) and negatively with fear/anxiety (r = -.141, p = 0.050). Negative ELDV perceptions (ex. ELDVs were caused by medications) affected grief in areas such as accepting the loss (r = -.235, p = .010) or maintaining connection (r = -.255, p = .010) with the deceased. Focus group discussions were thematically analyzed resulting in 4 themes: ELDV narrative, Connection, Reflection, and Other Experiences. CONCLUSIONS: Positive general attitudes toward dreams and positive ELDV perceptions are correlated with better bereavement outcomes. Therefore, patient and family education on ELDVs that focuses on awareness and understanding of ELDVs may enhance clinical outcomes for both family and patients.

Hospice Patient Care Goals and Medical Students' Perceptions: Evidence of a Generation Gap?

BACKGROUND: The ability to perceive care goals of the dying may be an indicator of future quality patient-centered care. Research conducted on end-of-life goals indicates discrepancies between patients and physicians. OBJECTIVE: The aim of this study is to compare end-of-life care goals of hospice patients and medical student perceptions of patient care goals. DESIGN: Hospice patients and medical students were surveyed on their care goals and perceptions, respectively, using an 11-item survey of goals previously identified in palliative care literature. Medical student empathy was measured using the Interpersonal Reactivity Index. SETTINGS/PARTICIPANTS: Eighty hospice patients and 176 medical students (97 first-year and 79 third-year) in a New York State medical school. RESULTS: Medical students ranked 7 of the 11 care goals differently than hospice patients: not being a burden to family (p < .001), time with family and friends (p = .002), being at peace with God (p < .001), dying at home (p = .004), feeling that life was meaningful (p < .001), living as long as possible (p < .001), and resolving conflicts (p < .001). Third-year students were less successful than first-year students in perceiving patient care goals of hospice patients. No significant differences in medical student empathy were found based on student year. CONCLUSIONS: Medical students, while empathetic, were generally unsuccessful in perceiving end-of-life care goals of hospice patients in the psychosocial and spiritual domains. Differences impeding the ability of medical students to understand these care goals may be generationally based. Increased age awareness and sensitivity may improve future end-of-life care discussions. Overall, there is a need to recognize the greater dimensionality of the dying in order to provide the most complete patient-centered care.

Reaching Adolescent and Young Adult Cancer Patients Through Social Media: Impact of the Photographs of Meaning Program.

Purpose: This study assessed the feasibility and preliminary efficacy of the Photographs of Meaning Program for Adolescent and Young Adult cancer patients and survivors (POM-AYA). Methods: POM-AYA is a structured 10-week meaning-based intervention in which participants post photographs and accompanying narratives through a social media platform. Measures of depression, overall quality of life (QoL), and spiritual well-being were assessed on consent (T1), after completing the 10-week intervention (T2) and 2 months' postintervention (T3). Participants also completed a satisfaction questionnaire and follow-up semi-structured interviews. Results: Thirty AYA cancer patients and survivors (ages 17-36) were enrolled in the study. At T2, depressive symptoms were significantly lower and QoL was significantly higher compared with T1. These gains were maintained at T3. There were no significant differences in reported spiritual well-being across the study period. Overall, participants reported high rates of study satisfaction in both the survey and qualitative feedback. Conclusion: POM-AYA appears to be a potentially beneficial, widely accessible intervention in reducing depressive symptoms and increasing QoL in AYA cancer patients and survivors.

The Photographs of Meaning Program for Pediatric Palliative Caregivers and Its Impact on Meaning, Well-Being, and Perceived Social Support.

Background: Caring for a child or adolescent with palliative care needs can significantly influence the physical, mental, financial, and social well-being of caregivers. Due to this multifaceted impact, there is a demand for evidence-based support that meets the distinct needs of this population. Objective: This study aims to evaluate the effect the Photographs of Meaning Program (POM) has on meaning and purpose, well-being, and perceived social support of pediatric palliative caregivers (PPCGs). Design: Over an eight-week period, participants followed a meaning-making curriculum via social media. Following the social media portion of the intervention, a reflection and closure event and a community photograph exhibit were held. Participants completed pre- and post-test measures. Setting/Subjects: Eighteen PPCGs participated in POM. Settings included participant homes, the medical campus of the palliative care program, and a community art gallery. Measurements: Participant meaning and purpose were assessed through the Meaning in Life Questionnaire. The Flourishing Scale measured PPCG well-being, while the Social Provisions Scale assessed perceived social support. Participants were also given a satisfaction survey at study closure. Results: Presence (p = 0.003) and search (p = 0.023) for meaning were both positively impacted at post-test. Participants' ratings of well-being (p = 0.037), overall social support (p = 0.004), areas of attachment (p = 0.003), social integration (p = 0.026), reassurance of worth (p = 0.002), and guidance (p = 0.014) significantly increased from pre- to post-test. Conclusions: POM is an effective social media-based intervention for PPCGs. Future research should assess the effectiveness of this intervention in populations with differing demographics and its effect on other psychosocial indicators.

Expanding the Understanding of Content of End-of-Life Dreams and Visions: A Consensual Qualitative Research Analysis.

Background: Research has established End-of-Life Dreams and Visions (ELDVs) as prevalent, meaningful valid experiences that may help patients cope with illness and approaching death. However, no inductive qualitative analysis has explored the phenomenology of ELDVs from the perspective of hospice homecare patients. Objective: The purpose of this study is to evaluate the content of ELDVs by using a rigorous qualitative approach. Design: Five hundred forty-eight ELDVs were collected from weekly interviews of hospice homecare patients and analyzed by using Consensual Qualitative Research Methodology. Settings/Subject: Participants were enrolled in a county-wide hospice homecare program between January 2013-March 2015. Results: The following domains emerged: (1) Interpersonal, (2) Affective Experience and Reflection, (3) Activities, and (4) Setting/Location. Conclusions: This study suggests that ELDV content may include a broader spectrum of experiences that reflect waking life than previously believed. Clinical implications suggest that it may be important for providers to engage with ELDVs, as they are psychologically significant experiences that may be a source of clinical insight.

End-of-Life Dreams and Visions and Posttraumatic Growth: A Comparison Study.

Background: End-of-life dreams and visions (ELDVs) can provide both meaning and comfort to individuals nearing death. While research has examined the prevalence and content of ELDVs, little is known on how dreaming at end of life may affect psychological processes. Objective: This study aimed to explore differences in posttraumatic growth (PTG) between hospice patients who experience ELDVs and hospice patients who do not experience this phenomenon. Design: This is a multimethod cross-sectional comparison study. Settings/Subjects: 70 hospice patients (35 with ELDV experiences and 35 without ELDV experiences) were recruited after being admitted to a hospice inpatient unit. Measurements: PTG was assessed using a modified version of the Posttraumatic Growth Inventory (PTGI). Demographic information, ELDV occurrence, and a brief description of ELDVs were also collected. Results: Significant differences emerged between groups in terms of personal strength (p = 0.012), spiritual change (p = 0.002), and overall PTG (p = 0.019). Patients with ELDV experiences had higher scores on all subscales as well as overall PTG compared to nondreaming patients. Conclusions: Dreams and visions at the end of life affect PTG of dying individuals in hospice care. Further research should be conducted between groups to examine the effects ELDVs may have on other psychological processes.

Family Caregiver Perspectives on End-of-Life Dreams and Visions during Bereavement: A Mixed Methods Approach.

Background: End-of-life dreams and visions (ELDVs) are prevalent experiences that provide comfort and meaning to dying individuals. Limited research has examined the impact of ELDVs on the bereaved. Objective: This study aimed to explore differences in self-reported grief for people whose loved ones shared ELDVs and those who did not, and to describe the role of ELDVs in the grieving process. Design: Mixed-methods cross-sectional survey. Settings/Subjects: A total of 228 bereaved family caregivers (FCGs) of patients who died while under the care of a comprehensive hospice program were recruited. Measurements: Demographics and ELDV prevalence were collected. Bereavement was assessed using the Core Bereavement Items (CBI) a validated measure. Impact on grief was also evaluated using an ad hoc tool. Results: Comfort from dreams significantly related to total CBI score (r = 0.224, p = 0.047) as well as the images and thoughts (r = 0.258, p = 0.025) and acute separation subscales (r = 0.224, p = 0.047). Comfort from dreams had a positive relationship with accepting the reality of loss (r = -0.511, p < 0.001), working through the pain of grief (r = -0.556, p < 0.001), adjusting to the new environment (r = -0.405, p = 0.001), and continuing bonds (r = -0.538, p < 0.001). CBI scores were not significantly different between caregivers who reported loved ones with ELDVs and others. Open-ended responses were thematically analyzed resulting in three emergent themes: comfort, reflection and emotions, and sense-making. Conclusions: ELDVs' impact extends beyond those experiencing them to bereaved loved ones. Bereaved FCGs report that comforting ELDVs experienced by their dying loved ones influenced their grief process in terms of the Worden's tasks of mourning.

The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program.

The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. During the social media portion of the POM-PPCG, participants were presented with weekly themes based on a meaning-making curriculum. In response, they took photographs, applied either audio or typed narratives, and shared them via social media. Ninety-five photographs with narratives were produced during the intervention. Through thematic qualitative analysis with consensual qualitative research components, 5 themes were identified: Love, Challenges, Loss, Coping, and The New Normal. This study adds to existing literature by shedding light on the experiences of caregivers of children with palliative care needs. Findings from this research contribute not only to the innovative use of qualitative methods but also to the clinical knowledge and practice regarding the pediatric palliative caregiver experience.

The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention.

BACKGROUND: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. OBJECTIVE: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers. DESIGN: Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close. SETTING/PARTICIPANTS: Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York. RESULTS: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants ( P = .022). Exit interviews conveyed satisfaction with the intervention. CONCLUSIONS: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.

"People don't understand what goes on in here": A consensual qualitative research analysis of inmate-caregiver perspectives on prison-based end-of-life care.

BACKGROUND: The age demographic of the incarcerated is quickly shifting from young to old. Correctional facilities are responsible for navigating inmate access to healthcare; currently, there is no standardization for access to end-of-life care. There is growing research support for prison-based end-of-life care programs that incorporate inmate peer caregivers as a way to meet the needs of the elderly and dying who are incarcerated. AIM: This project aims to (a) describe a prison-based end-of-life program utilizing inmate peer caregivers, (b) identify inmate-caregiver motivations for participation, and (c) analyze the role of building trust and meaningful relationships within the correctional end-of-life care setting. DESIGN: A total of 22 semi-structured interviews were conducted with inmate-caregivers. Data were analyzed using Consensual Qualitative Research methodology. SETTING/PARTICIPANTS: All inmate-caregivers currently participating in the end-of-life peer care program at Briarcliff Correctional Facility were given the opportunity to participate. All participants were male, over the age of 18, and also incarcerated at Briarcliff Correctional Facility, a maximum security, state-level correctional facility. RESULTS: In total, five over-arching and distinct domains emerged; this manuscript focuses on the following three: (a) program description, (b) motivation, and (c) connections with others. CONCLUSION: Findings suggest that inmate-caregivers believe they provide a unique and necessary adaptation to prison-based end-of-life care resulting in multilevel benefits. These additional perceived benefits go beyond a marginalized group gaining access to patient-centered end-of-life care and include potential inmate-caregiver rehabilitation, correctional medical staff feeling supported, and correctional facilities meeting end-of-life care mandates. Additional research is imperative to work toward greater standardization of and access to end-of-life care for the incarcerated.

Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study.

OBJECTIVE: Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life. BACKGROUND: Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction. METHODS: A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period. RESULTS: An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health. DISCUSSION: High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.

Screening for Delirium: Development and Validation of the Buffalo Delirium Scale for Use in a Home-Based Hospice Setting.

BACKGROUND: Delirium is a challenging occurrence among people at end of life. It can be difficult to detect and treat because of its episodic nature. The Buffalo Delirium Scale (BDS) was designed to identify risk factors for hospice patients in the prodromal stage of delirium. OBJECTIVE: This study evaluated the psychometric properties of items assessing delirium risk factors related to cognitive problems, psychological distress, and sleep problems. METHODS: Hospice nursing staff assessed patients with the 11-item BDS over a 6-month period as part of standard weekly visits to monitor for emerging signs of delirium, for example, sleep patterns, cognition, and behavior. SETTING/PARTICIPANTS: The rating period produced 4992 assessments from 817 hospice home care patients. RESULTS: Factor analysis of nurses' ratings identified 3 factors: (1) cognitive problems, (2) distress, and (3) sleep problems. Coefficient αs for these factors and total score were moderate to high (range = .66-.82). Nurses' ratings of presence of delirium highly correlated with scores on distress ( r = .40, P < .01), while dementia highly correlated with cognitive problems ( r = .50, P < .01). Analysis of at-risk cases with high BDS total scores where no delirium was assessed indicated that quality sleep may mitigate delirium onset. CONCLUSION: Preliminary psychometric testing suggests BDS to be a valid and appropriate measure for hospice patients. Use of BDS may help differentiate individuals in prodromal stage of delirium versus dementia. Examination of BDS scores may help identify patients for whom sleep interventions may delay onset of or reduce the frequency of delirium.

A consensual qualitative research analysis of the experience of inmate hospice caregivers: Posttraumatic growth while incarcerated.

A growing number of correctional facilities train inmates to provide end-of-life care for dying inmates. This study explores the phenomenological perspective of inmate-caregivers participating in an inmate-facilitated hospice program (IFHP) with regard to meaning and purpose in life, attitudes on death and dying, and perceived personal impact of participation. Twenty-two inmate-caregivers were interviewed at a maximum-security state correctional facility in the United States. The interviews were transcribed verbatim and analyzed using the Consensual Qualitative Research Methodology. Results suggest that participating in an IFHP may facilitate personal growth and transformation that mirrors the tenets of posttraumatic growth.

Meaning-centered dream work with hospice patients: A pilot study.

OBJECTIVE: Hospice patients often struggle with loss of meaning, while many experience meaningful dreams. The purpose of this study was to conduct a preliminary exploration into the process and therapeutic outcomes of meaning-centered dream work with hospice patients. METHOD: A meaning-centered variation of the cognitive-experiential model of dream work (Hill, 1996; 2004) was tested with participants. This variation was influenced by the tenets of meaning-centered psychotherapy (Breitbart et al., 2012). A total of 12 dream-work sessions were conducted with 7 hospice patients (5 women), and session transcripts were analyzed using the consensual qualitative research (CQR) method (Hill, 2012). Participants also completed measures of gains from dream interpretation in terms of existential well-being and quality of life. RESULTS: Participants' dreams generally featured familiar settings and living family and friends. Reported images from dreams were usually connected to feelings, relationships, and the concerns of waking life. Participants typically interpreted their dreams as meaning that they needed to change their way of thinking, address legacy concerns, or complete unfinished business. Generally, participants developed and implemented action plans based on these interpretations, despite their physical limitations. Participants described dream-work sessions as meaningful, comforting, and helpful. High scores on a measure of gains from dream interpretation were reported, consistent with qualitative findings. No adverse effects were reported or indicated by assessments. SIGNIFICANCE OF RESULTS: Our results provided initial support for the feasibility and helpfulness of dream work in this population. Implications for counseling with the dying and directions for future research were also explored.

End-of-Life Dreams and Visions: A Qualitative Perspective From Hospice Patients.

End-of-life dreams and visions (ELDVs) are well documented throughout history and across cultures with impact on the dying person and their loved ones having profound meaning. Published studies on ELDVs are primarily based on surveys or interviews with clinicians or families of dead persons. This study uniquely examined patient dreams and visions from their personal perspective. This article reports the qualitative findings from dreams and visions of 63 hospice patients. Inductive content analysis was used to examine the content and subjective significance of ELDVs. Six categories emerged: comforting presence, preparing to go, watching or engaging with the deceased, loved ones waiting, distressing experiences, and unfinished business.