Role of Post-Traumatic Growth in Bereavement Outcomes: An Inquiry of Family Caregivers in Hospice.

Background: Family caregivers (FCGs) encounter several physical, psychosocial, and financial struggles while caring for a dying loved one. After their loved one has passed, FCGs face new difficulties as they transition out of the caregiving role and into bereavement. Recent research has focused on the positive adaptive outcomes of bereavement. Objective: This study examined the relationship between core bereavement experiences and post-traumatic growth (PTG) for bereaved hospice FCGs. Design: This is a quantitative cross-sectional mail-in survey. Settings/Subjects: A total of 395 bereaved FCGs of patients who died while under the care of a comprehensive hospice program were surveyed. Measurements: Demographics were collected. Bereavement experiences were assessed using the core bereavement items, and PTG was assessed using the Posttraumatic Growth Inventory (PTGI). Both surveys are validated measures. Results: Two-tailed bivariate correlations were used to analyze the relationships between bereavement experiences and PTG. Significant positive relationships were found between all bereavement experiences and PTG variables (p = <0.01-0.011, r = 0.134-0.290), except for one variable pairing (grief × new possibilities). Participants who reported more intense bereavement experiences also reported greater PTG, especially in the areas relating to others and appreciation of life. Conclusion: FCGs who undergo more intense bereavement experiences tend to experience greater PTG. This information can be used in the future to develop a more comprehensive understanding of the multifaceted nature of grief and loss.

End-of-Life Dreams and Visions: Initial Guidelines and Recommendations to Support Dreams and Visions at the End of Life.

Background: End-of-life dreams and visions (ELDVs) are a common phenomenon in which dying patients experience dreams/visions often of deceased loved ones before death. Past research has highlighted the need for education and awareness to improve clinical engagement at the bedside in response to ELDVs. Objectives: To explore the perspectives of multidisciplinary hospice care providers who are ELDV subject matter experts. Design/Methods: Semi-structured interviews with 13 multidisciplinary hospice providers were conducted and analyzed using thematic qualitative analysis. Results: Analysis revealed six themes: Normalization, Rapport Building, Active Listening, Individualized Meaning Making, Barriers, and Education. A secondary thematic analysis focused on defining/describing ELDVs and resulted in two themes: Natural Part of Dying and ELDV Properties. Conclusions: Findings identified facilitators and barriers encountered when caring for a patient with ELDVs. Based on this, an initial set of recommendations for meaningful clinical engagement regarding ELDVs and initial operationalized definition has been proposed.

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.

Treatment of Positive Urine Cultures at End-of-Life and the Effect on Terminal Delirium Management.

Background: The decision to initiate antibiotics in hospice patients that are very near end-of-life is a complex ethical and stewardship decision. Antibiotics may be ordered to improve urinary tract infection-related symptoms, such as delirium. However, infection symptoms may be managed using antipsychotics, antipyretics, antispasmodics, and analgesics instead. Currently, there are no studies that compare symptom management between those who receive antibiotics and those who do not. Methods: A retrospective chart review was conducted for patients admitted to a hospice inpatient unit. Charts were included if the patient was admitted for delirium and had a Palliative Performance Scale score ≤40%, the urine culture was positive for organism growth, and the patient died while in the HIU. Clinical and demographic data was collected. Medication use was tallied for the 5 days prior to the date of death. Results: Sixty-one charts met the inclusion criteria. Thirty-five patients received antibiotics (ABX+) and 26 did not (ABX-). There was no difference in any medication consumption between groups during the 5 days prior to death. The ABX+ group died 8.2 days after obtaining the urine sample vs 6 days (P =0.046). The ABX+ group had more documented urinary tract-specific infection symptoms (66% vs 38%, P =0.042). More than half of antibiotic courses were discontinued prematurely. Conclusion: The results of this study do not show a difference in overall medication consumption between groups, which suggests that antibiotics may not help improve terminal delirium symptoms in those with a suspected urinary tract infection at end-of-life.

Single Subcutaneous Ketamine Dose Followed by Oral Ketamine for Depression Symptoms in Hospice Patients: A Case Series.

Management of depression symptoms in hospice patients is complicated by the fact that an appropriate trial of antidepressant therapy requires 4-6 weeks and most hospice patients receive hospice services for less than 8 weeks. Intravenously administered ketamine has been shown to produce rapid improvement in depression symptoms but is not an ideal route for hospice patients and oral ketamine appears to have a slower onset of antidepressant activity. We present a case series that illustrates the use of a single subcutaneous dose of ketamine (0.5 mg/kg) followed by daily oral ketamine (0.5 mg/kg daily) therapy to manage depression symptoms in three hospice patients. Clinical improvement of depression symptoms occurred quickly for all patients as measured by the PHQ-4, numeric ratings, and subjective reporting. A single subcutaneous dose of ketamine followed by oral therapy presents itself as an option to quickly reduce depression symptoms in hospice patients that do not also require additional pain management. Combining the use of the subcutaneous and oral routes takes advantage of the possibly faster onset, home administration, and milder side effects than intravenous dosing. Prospective studies are needed to determine which dosing strategy would be the most beneficial for hospice patients.

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.

Holding onto Hurt: The Prevalence of Interpersonal Hurt and Need for Forgiveness-Focused Solutions for Hospice Family Caregivers.

Background: Interpersonal hurt or offenses are common human experiences. Bereavement may be impacted for caregivers of a terminally ill loved one when these experiences occur. Objective: To determine the prevalence and impact of interpersonal hurt-based experiences for hospice caregivers and interest in forgiveness-based support. Design: Cross-sectional, mixed methods needs assessment. Settings/Subjects: Bereaved hospice caregivers (n = 162) and direct care hospice clinicians (n = 133) were surveyed through mail-in and online surveys. Measurements: Participants completed ad hoc surveys to assess prevalence and impact of interpersonal hurt experiences and interest in forgiveness-based support. Bereaved caregivers also completed the Core Bereavement Items (CBI). Results: 41.98% of the bereaved experienced an interpersonal hurt or offense during the care or passing of their loved one. Those with hurt experiences felt highly impacted (63.2%), "sometimes" or "often" revisited the experience (91.2%), felt that their bereavement was affected (61.5%), and experienced physical symptoms (46.3%). CBI scores positively correlated with the impact of the experience. Hurt caregivers had higher CBI scores compared with those who did not. Of those who had not forgiven the offender, 46.3% felt that they could benefit from forgiveness-based support services. Qualitative analysis revealed themes of Disagreements with Decisions, Lack of Support, Relational Interactions, and Impact on Bereavement. Clinician responses supported these results. Conclusions: Interpersonal hurt experiences can greatly impact the offended caregiver during caregiving and in bereavement. However, it should be noted that the decision to forgive is ultimately a personal choice and therefore forgiveness-based for forgiveness-specific interventions may not be appropriate for all individuals. Future research should assess the feasibility and usefulness of this type of support for caregivers and the bereaved.

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.

End-of-Life Dreams and Visions in Pediatric Patients: A Case Study.

Background: End-of-life dreams and visions (ELDVs) are a recognized phenomenon that can occur as part of the normal dying process. Data suggest that ELDVs can provide comfort, foster discussion of waking life concerns, and lessen the fear of death. Current literature on ELDVs focuses on the prevalence, content, and effects of ELDVs exclusively in adult populations. Methods: We present the case of a 15-year-old girl with terminal glioblastoma who was enrolled in a pediatric palliative care program and later in hospice care. During her end-of-life trajectory, the patient experienced two distinct ELDV experiences, from which she recalled vivid details regarding the setting, characters, and content. These ELDV experiences afforded comfort and meaning to the patient and her family through her end-of-life trajectory as well as provided relief for her grieving family. Conclusion: In the case presented, ELDVs appear to show similar characteristics and impact in the adolescent population as described in the previous literature examining adult ELDVs. In addition, this case demonstrates the potential benefits of ELDV awareness for the bereaved. Clinicians working with pediatric and adolescent end-of-life populations should take note of the potential for ELDVs and the impact they can have on both patients and families.

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.

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.

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 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.