Caregivers are critical in advanced care planning (ACP) discussions, which are difficult but necessary to carry out patients’ goals of care. We developed and evaluated the feasibility and acceptability of a communication training to equip caregivers of patients with malignant brain tumors with skills to navigate ACP conversations.

Caregivers completed a 2-h virtual training addressing ACP Discussions with Your Loved One and ACP Discussions with the Medical Team. A pre-training assessment was completed at baseline and a training evaluation was completed one day post-training. A subset of participants completed semi-structured interviews 2 months post-training.

Of 15 caregivers recruited, 9 attended the training and 4 completed qualitative interviews. Post-training, 40% felt confident in discussing ACP with loved ones and 67% felt confident doing so with healthcare professionals; 100% reported feeling confident in using skills learned in the training to facilitate these conversations. Data from qualitative interviews highlighted additional benefits of the training in empathic communication skills and fostering social support.

Our communication skills training shows promise in supporting caregivers’ skills and confidence in engaging in ACP discussions with patients and healthcare providers. A future randomized controlled trial with a larger and more diverse caregiving sample is needed to determine training efficacy.

Meaninglessness is one of the most common psychological problems in cancer patients, which can lead to anxiety, depression and psychological distress, and diminished quality of life. Recent evidence indicates that meaning-centered group psychotherapy (MCGP) effectively enhances the meaning in life among cancer patients. This study aimed to evaluate the impact of MCGP on the meaning in life, post-traumatic growth, psychological distress, and fear of recurrence among Chinese cancer patients with a favorable prognosis.

Sixty-six cancer patients were randomly assigned to either the MCGP group (n = 33) or the control group (n = 33). Participants in the MCGP group underwent a 4-week, 8-session MCGP, while those in the control group received usual care. Meaning in life, post-traumatic growth, psychological distress, and fear of recurrence were assessed at both baseline and postintervention to evaluate the impact of the intervention. The intervention outcomes were analyzed using paired t-tests or analysis of covariance, as appropriate.

Patients in the MCGP group demonstrated significant improvements in meaning in life, post-traumatic growth, and fear of recurrence from baseline to postintervention. In comparison to the control group, the MCGP group displayed positive effects on meaning in life and post-traumatic growth following the intervention. However, no significant effects were observed in terms of psychological distress and fear of recurrence.

Our research offers evidence supporting the effectiveness of MCGP in enhancing meaning in life and post-traumatic growth among Chinese cancer patients with a favorable prognosis.

The current study explored the impact of cancer-related fertility concerns on existential distress and meaning making among female breast cancer (BC) patients of childbearing age and assessed support needs.

The current study was embedded within a larger study. A seven-question online survey was administered to female BC participants to explore meaning and identity in their lives. Applied thematic analysis was used to analyze participants’ written responses.

A total of 98 participants completed the survey, the majority of whom identified as white, married or partnered, and employed full time and with stage I or II BC. More than 50% of the participants expressed a need for support from a counselor or support group during their cancer experience. Three subthemes emerged related to existential distress and cancer-related fertility concerns: (1) loss of womanhood: treatment-related physical changes impact on gender identity; (2) existential distress due to treatment decisions impacting fertility; and (3) shattered vision: cancer-related infertility impact on meaning and purpose. Four subthemes emerged related to meaning making with fertility-related existential concerns: (1) coping with loss of meaning, (2) re-evaluating priorities in life; (3) resilience to loss, and (4) persistent loss of meaning.

Study results offer valuable insights into the experiences of female BC survivors’ cancer-related fertility on existential distress and meaning making. Development of psychological interventions targeted to support this population to cope with existential distress due to cancer-related fertility concerns and meaning making are needed to improve the quality of life of this population.

Psychedelic-assisted therapies (PAT) are emerging as a promising treatment for psycho-existential distress in patients with serious illness. A recent qualitative analysis of perspectives of 17 experts in serious illness care and/or PAT research identified divergent views on the therapeutic potential and safety of PAT in patients with serious illness. This paper further analyzes the factors that may influence these views.

To identify factors underlying the attitudes of experts in serious illness care and/or PAT toward PAT and its potential role in serious illness care.

Semi-structured interviews of 17 experts in serious illness care and/or PAT from the United States and Canada were analyzed to identify factors cited as influencing their views on PAT.

Five factors were identified as influencing experts’ attitudes toward PAT: perception of unmet need, knowledge of empirical studies of PAT, personal experience with psychedelics, professional background, and age/generation. In addition, an integrative theme emerged from the analysis, namely PAT’s disruptive potential at 4 levels relevant to serious illness care: patient’s experience of self, illness, and death; relationships with loved ones and health-care providers; existing clinical models of serious illness care; and societal attitudes toward death. Whether this disruptive potential was viewed as a therapeutic opportunity, or an undue risk, was central in influencing experts’ level of support. Experts’ perception of this disruptive potential was directly influenced by the 5 identified factors.

Points of disruption potentially invoked by PAT in serious illness care highlight important practical and philosophical considerations when working to integrate PAT into serious illness care delivery in a safe and effective way.

Palliative sedation (PS) and Medical Assistance in Dying (MAiD) are options for end-of-life (EOL) care in Canada, since the latter was legalized in 2016. Little research to date has explored the potential impact of MAiD on PS practices. This study investigated physicians’ perceptions of their practices surrounding PS and how they may have changed since 2016.

A survey (n=37) and semi-structured interviews (n=23) were conducted with palliative care providers throughout Ontario. Questions focused on PS practices and explored potential changes following the implementation of MAiD. Codes were determined collaboratively and applied line-by-line by 2 independent investigators. Survey responses were analyzed alongside interview transcripts and noted to be concordant. Themes were generated via reflexive thematic analysis.

Thematic analysis yielded the following themes: (1) Increased patient/family knowledge of EOL care; (2) More frequent/fulsome discussions; (3) Normalization/repositioning of PS; and (4) Conflation and differentiation of PS/MAiD. Across these themes, participants espoused increased patient, family, and provider comfort with PS, which may stem equally from the advent of MAiD and the growth of palliative care in general. Participants also emphasized that, following MAiD, PS is viewed as a less radical intervention.

This is the first study to investigate physicians’ perspectives on the impact of MAiD on PS. Participants strongly opposed treating MAiD and PS as direct equivalents, given the differences in intent and eligibility. Participants stressed that MAiD requests/inquiries should prompt individualized assessments exploring all avenues of symptom management – the results of which may or may not include PS.

Hospice patients and caregivers who are members of sexual and gender minority groups (i.e., LGBTQ+) have reported experiencing unmet needs at end of life (EOL). Negative experiences often stem from challenging interactions with healthcare providers due to ineffective or poor communication and providers’ heteronormative assumptions and biases. Few studies, however, examine hospice care team (HCT) providers’ knowledge, experience, and opinions related to EOL care for LGBTQ+ patients and caregivers despite this being identified as a gap in competency and education. We sought to examine HCT providers’ perceptions regarding (1) awareness of LGBTQ+ patients and caregivers; (2) knowledge of specific or unique needs; and (3) opinions on best care and communication practices.

Six focus groups conducted with HCT providers (n = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded (κ = 0.77), aggregated by topical categories, and descriptively summarized.

Participants were mostly white and non-Hispanic (n = 43, 89.6%), cisgender female (n = 42, 87.5%), heterosexual (n = 35, 72.9%), and religious (n = 33, 68.8%); they averaged 49 years of age (range 26–72, SD = 11.66). Awareness of LGBTQ+ patients and caregivers depended on patient or caregiver self-disclosure and contextual cues; orientation and gender identity data were not routinely collected. Many viewed being LGBTQ+ as private, irrelevant to care, and not a basis for people having specific or unique EOL needs because they saw EOL processes as universal, and believed that they treat everyone equally. Providers were more comfortable with patients of lesbian or gay orientation and reported less comfort and limited experience caring for transgender and gender-diverse patients or caregivers.

Many HCT members were unaware of specific issues impacting the EOL experiences of LGBTQ+ patients and caregivers, or how these experiences may inform important care and communication needs at EOL.

The study aims to describe inadequate, disrespectful, and abusive palliative and hospice care received by lesbian, gay, and bisexual (LGB) patients and their spouses/partners due to their sexual orientation or gender identity.

A national sample of 865 healthcare professionals recruited from palliative and hospice care professional organizations completed an online survey. Respondents were asked to describe their observations of inadequate, disrespectful, or abusive care to LGB patients and their spouses/partners.

There were 15.6% who reported observing disrespectful care to LGB patients, 7.3% observed inadequate care, and 1.6% observed abusive care; 43% reported discriminatory care toward the spouses/partners. Disrespectful care to LGB patients included insensitive and judgmental attitudes and behaviors, gossip and ridicule, and disrespect of the spouse/partner. Inadequate care included denial of care; care that was delayed incomplete, or rushed; dismissive or antagonistic treatment; privacy and confidentiality violations; and dismissive treatment of the spouse/partner.

These findings provide evidence of discrimination faced by LGB patients and partners while receiving care for serious illness. Hospice and palliative care programs should promote respectful, inclusive, and affirming care for the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community, including policies and practices that are welcoming and supportive to both employees and patients. Staff at all levels should be trained to create safe and respectful environments for LGBTQ patients and their families.

On 3–4 October 2022, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the Third Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to reflect on the event within the broader context of the international WHPCD theme: “healing hearts and communities.” We describe lessons learned in anticipation of the fourth annual conference to be held on 3–4 October 2023.

Description of the third annual event, conference planning team reflection, and attendee evaluation responses.

The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care globally. Since 2020, the conference has attracted an increasing number of attendees from around the world. Two primary aims continue to guide the event: community building and wisdom sharing. Fifty-two interprofessional palliative care experts, advocates, patients, and caregivers provided 13 unique interactive sessions. Four hundred and fifty-eight multidisciplinary registrants from at least 17 countries joined the program. Free registration for colleagues in low- and middle-income countries, students and trainees, and individuals experiencing financial hardship remains a cornerstone of inclusion and equitable access to the event.

The US WHPCD celebration provides a virtual platform that offers opportunities for scientific dissemination and collective reflection on hospice and palliative care delivery amid significant local and global changes in clinical practice, research, policy and advocacy, and population health. We remain committed to ensuring an internationally relevant, culturally diverse, and multidisciplinary agenda that will continue to draw increased participation worldwide during future annual events.

There is increasing concern regarding the quality of palliative nursing care. However, despite the growing number of studies identifying related variables, there is still a paucity of studies analyzing models of how these variables interrelate.

The study aimed to identify the role played in the quality of palliative care of nursing professionals by the variables meaning and death anxiety and to investigate the mediating role of psychological well-being and engagement.

176 palliative nursing professionals participated, selected by non-probabilistic convenience sampling using the snowball method. A simple mediation analysis and a multiple mediator model were performed in parallel, and data were collected using a paper and online questionnaire between January and May 2018.

Well-being mediated the impact of meaning (indirect effect = 0.096, SE = 0.044, 95% confidence interval (CI): 0.028, 0.213) and death anxiety (indirect effect = −0.032, SE = 0.013, 95% CI: −0.064, −0.010) on the quality of care. Engagement, on the other hand, only mediated the impact of meaning (indirect effect = 0.185, SE = 0.085, 95% CI: 0.035, 0.372), while the indirect effect of death anxiety with the quality of care through engagement was not statistically significant (indirect effect = 0.008, SE = 0.009, 95% CI: −0.004, 0.032).

Death anxiety is not directly related to the quality of care, but rather has an effect through psychological well-being, a variable acting as a mediator between the two. The effect of meaning on the quality of care is explained by the mediation of both engagement and psychological well-being, and its impact on the quality of care is thereby mediated by more variables than death anxiety.

Latino patients have been shown to engage in advance care planning (ACP) at much lower rates than non-Latino White patients. Coping strategies, such as the use of emotional support, may differentially relate to engagement in ACP among Latino and non-Latino patients. The present study sought to examine the moderating effect of ethnicity on the relationship between the use of emotional support as a coping strategy and completion of advance directives.

The present study employed a weighted sample (Nw = 185) of Latino and non-Latino White patient participants in Coping with Cancer III, an National Institutes of Health–sponsored, multisite, longitudinal, observational cohort study of patients with advanced cancer and their informal caregivers and oncology providers designed to evaluate Latino/non-Latino disparities in ACP and end-of-life cancer care. Main and interaction effects of Latino ethnicity and use of emotional support on patient use of advance directives were estimated as odds ratios.

Use of emotional support was associated with dramatically lower do-not-resuscitate (DNR) order completion to a greater extent among Latino as compared to non-Latino patients (interaction AOR = 0.33, p = 0.005). Interaction effects were not statistically significant for living will or health-care proxy form completion.

Use of emotional support is associated with lower odds of completing DNRs among Latino than among non-Latino patients. Seeking and/or receiving emotional support may deter Latino patients from completing DNR orders. Research is needed to address both emotional needs and practicalities to ensure high quality end-of-life care among Latino patients with cancer.

To describe the development and implementation of a novel tool designed to enhance nurse–patient communication in a major academic cancer center, which nurses can learn quickly, incorporate into their primary palliative care practice, and broadly disseminate in order to improve the patient experience.

An evidence-based empathic communication tool and educational program were designed to provide essential skills to oncology nurses in having discussions with patients about their personal values. Evaluation included nurse focus groups, pre- and post-course evaluations and interviews, and patient questionnaires.

Nurses were satisfied with the educational program and found the communication tool effective in a variety of clinical situations including discussions about personal values. Patients reported increased occurrences of these discussions when nurses utilized the framework (97% vs. 58%, p < 0.0001) and a higher quality of clinician communication (mean [SD] from 0 = very worst to 10 = very best: 7.18 [2.3] vs. 5.04 [2.9], p = 0.001).

Skilled, empathic communication is an essential component of high-quality primary palliative care. Oncology nurses are well suited to lead communication and provide this care as part of an interprofessional team. The training and tool described here are targeted and efficient, and prepare nurses to respond skillfully to emotion while facilitating important discussions about patient values.

The mutual influence between end-of-life cancer patients and their family caregivers is widely endorsed. The present study aimed to explore the relationship between end-of-life cancer patients’ dignity-related distress and the distress of their caregivers.

A cross-sectional approach was used. The sample consisted of 128 patients with a Karnofsky Performance Status (KPS) below 50 and a life expectancy of a few weeks, and their family caregivers. Personal and clinical data were collected and validated rating scales were administered: Patient Dignity Inventory (PDI) to terminal cancer patients; Hospital Anxiety and Depression Scale (HADS), Demoralization Scale (DS), Herth Hope Index (HHI), Caregiver Reaction Assessment (CRA), Short Form Health Survey 36 (SF-36), and Distress Thermometer (DT) to caregivers.

Findings highlighted significant correlations between patients’ scores on the Psychological Distress PDI subscale and the PDI Total Score and caregivers’ Emotional Role. Patients’ Psychological Distress, PDI Total Score, and Loss of Purpose and Meaning were associated with caregivers’ Disrupted Schedule. Finally, patients’ Physical Symptoms and Dependency, Loss of Purpose and Meaning, and PDI Total Score were correlated with caregivers’ Disheartenment.

The results highlighted the key role of dignity as a relational dimension during the end-of-life phase. Therefore, because of caregivers’ distress could affect patients’ dignity-related distress by influencing the interpersonal aspects of patients’ autonomy, it would be important to relieve caregivers’ distress in order to promote patients’ autonomy and minimize their fear of being a burden.

Serious illness conversations (SICs) can improve the experience and well-being of patients with advanced cancer. A structured Serious Illness Conversation Guide (SICG) has been shown to improve oncology patient outcomes but was developed and tested in a predominantly White population. To help address disparities in advanced cancer care, we aimed to assess the acceptability of the SICG among African Americans with advanced cancer and their clinicians.

A two-phase study conducted in Charleston, SC, included focus groups to gather perspectives on the SICG in Black Americans and a single-arm pilot study of a revised SICG with surveys and qualitative exit interviews to evaluate patient and clinician perspectives. We used descriptive analysis of survey results and thematic analysis of qualitative data.

Community-based and patient focus group participants (N = 20) reported that a simulated conversation using an adapted SICG built connection, promoted control, and fostered consideration of religious faith and family. Black patients with advanced cancer (N = 23) reported that SICG-guided conversations were acceptable, helpful, and promoted conversations with loved ones. Oncologists found conversations feasible to implement and skill-building, and also identified opportunities for training and implementation that could support meeting the needs of their patients with low health literacy. An adapted SICG includes language to assess the strength and affirm the clinician–patient relationship.

An adapted structured communication tool to facilitate SIC, the SICG, appears acceptable to Black Americans with advanced cancer and seems feasible for use by oncology clinicians working with this population. Further testing in other marginalized populations may address disparities in advanced cancer care.

Knowledge, beliefs, and attitudes toward palliative care (PC) constitute barriers to its access. Few studies have focused on the intrinsic relationship between these variables, and none has examined the relationship between them and self-care self-efficacy.

To examine the direct and indirect effects of self-care self-efficacy, knowledge, and beliefs on attitudes toward PC.

A cross-sectional predictive study was conducted. Self-care self-efficacy, knowledge, attitudes, and beliefs about PC were analyzed using information from the Health Information National Trends Survey (HINTS 5, cycle 2, 2018). Data from 1,162 participants were considered. Structural equation modeling (SEM) was used to represent the statistical mediation model with latent and observable variables.

The structural model presents positive coefficients indicating that self-care self-efficacy significantly predicts knowledge (β = 0.127, p < 0.001) and beliefs (β = 0.078, p = 0.023). Similarly, knowledge is associated with attitudes (β = 0.179, p < 0.001) and beliefs (β = 0.213, p < 0.001). The beliefs measure is also significantly related to attitudes (β = 0.474, p < 0.001). In addition, this structural multiple mediation model shows optimal goodness-of-fit indices: χ2/df = 3.49, CFI = 0.983, TLI = 0.976, RMSEA = 0.046 [90% CI: 0.037–0.056], SRMR = 0.038.

Self-care self-efficacy is significantly associated with knowledge and beliefs about PC, which in turn are related to each other. Altogether, these variables predict positive attitudes toward PC. Understanding the relationship between these variables is relevant for targeting-specific populations and designing timely strategies to improve access to PC.

One of the issues that has increasingly become relevant to medical practice is the ability to communicate well with patients. Better communication results in better care for the patient, as well as greater satisfaction for the physician. For this reason, the aim of this study was to assess the efficacy of a communication skills training program for medical residents (MR).

Eighty-six MR underwent a 6-month training program in three phases: a 12-h theory and practice workshop, a period of real practice, and a 4-h workshop in which the most challenging scenarios were role played with an actress. In each phase (T0, T1, and T2), participants’ beliefs about their competence in caring for patients’ psychosocial aspects and their self-confidence in communication skills were assessed.

No differences were found between T0 and T1 in participants’ beliefs of self-competence in psychosocial care. However, this competence significantly improved after completion of the entire program. Only 7 of the 12 areas explored in communication skills significantly improved between T0 and T1. However, after T2 completion, significant improvements were observed in all 12 areas.

The research results highlight the usefulness and importance of training young doctors to foster their psychosocial approach to patient care and improve their confidence in their own communication skills. The results also show the appropriateness of the structure of the training: the key features of the programme were the follow-up of the participants in three phases over 6 months, and a focus on the needs of the residents and the resolution of difficult clinical cases, with the support of an actress. Therefore, the training presented in this study may become a guide for other trainings in other contexts with similar objectives.

Final conversations (FCs) go beyond how patients want to be cared for at the end of life (EOL) and focus on messages of love, identity specific, and unique to an individual and relationship that requires self-examination, everyday talk that normalizes a difficult situation, religious/spiritual messages, and if needed, difficult relationship talk to heal broken relationships. The purpose of the Catalyzing Relationships at the End of Life (CAREol) program was to provide interdisciplinary education to nursing and medical students and clinical faculty about facilitating FCs among patients and families.

This two-part, quasi-experimental program consisted of a cognitive (online) and experiential (live simulation) curriculum experience. Program curriculum, including video vignettes, readings, and live simulation (utilizing actors), was developed by the study team. Reflective journaling and researcher designed pre- and post-tests were used to assess comfort, confidence, importance, and distress regarding FCs and collaboration with other disciplines.

The pre-/post-test questions demonstrate statistical significance based on a paired t-test with effect sizes supporting the practical importance of the findings for effect size. Preliminary content and thematic analysis of qualitative responses describe categories of the mock team meeting experience and interaction with the actors to change patient and family outcomes.

Early intervention with the CAREol program provides a framework to help students and clinical faculty facilitate FCs that may result in peace and comfort for patients and families during a difficult time.