To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges of implementing new communication tools into clinical practice.

A qualitative description study using individual interviews with a diverse group of pediatric clinicians who participated in 2.5-hour SICP training workshops at pediatric tertiary hospitals. Discussions were transcribed, coded, and arranged into overarching themes. Thematic analysis was conducted using interpretive description methodology.

Fourteen clinicians from 2 Canadian pediatric tertiary hospital settings were interviewed, including nurses (36%), physicians (36%), and social workers (29%), from the fields of neonatology (36%), palliative care (29%), oncology (21%), and other pediatric specialties (14%). Key themes included specific benefits of SICP, with subthemes of connecting with families, increased confidence in ACP discussions, providing tools to improve communication, and enhanced self-awareness and self-reflection. A second theme of perceived challenges emerged, which included subthemes of not having the conversation guide readily accessible, divergent team communication practices, and particular features of the clinical environment which limited the possibility of engaging in ACP discussions with parents.

A structured program to enhance serious illness communication supports clinicians to develop skills and tools to increase their confidence and comfort in conducting conversations about end-of-life issues. Addressing challenges of adopting the newly learned communication practices, by providing access to digital SICP tools and conducting SICP training for clinical teams may further support clinicians to engage in ACP.

This study aimed to explore in a naturalistic, real-life setting the dynamics of trust in oncological consultations.

Cases to study were purposively selected from a data set of audio-recorded and transcribed consultations between oncology physicians and patients with advanced cancer, and analyzed qualitatively. The analytical approach was deductive, relying on a thematic framework of dimensions of trust, and inductive, not restricted by this framework.

The multiple case study approach allowed to identify factors, which play a role in the dynamics of trust. These factors are the number of treating physicians and how they communicate, continuity of care and the capital of trust, the hierarchical position of the physician and the physician's self-trust, and the patient's personality.

The findings illustrate the importance to contextualize trust in the flow of oncological consultations and to conceive it comprehensively for each singular encounter between patients and clinicians.

Having a child with cancer is a burdensome experience for parents. Nurses need to better understand beliefs, hopes, and values of parents to holistically support them, which may have an impact on grief and depression. Thus, the aim of this paper was to highlight the social and spiritual dimensions of parental experiences on end-of-life care of their child with cancer.

A narrative literature review was conducted by systematically searching databases (CINAHL Complete, Academic Search Elite, MEDLINE) for relevant literature. The contents of included studies were critically appraised regarding their methodological quality.

Eleven studies were included. In terms of the social dimension, three categories emerged that are important for parents: Being a Parent, Being in Relationship with the Child, and Being in Relationship with Health Professionals. Parents tried to maintain normality and joy for their child, but also kept control over the situation. They wanted to protect their child from suffering but also felt the need to talk to them about dying. Parents had ambivalent experiences with helpful but also burdensome staff. The spiritual dimension comprised two main categories, Hope and Faith and a Unique Bond. Hope was found to be an important source of strength, while Faith was only mentioned by some parents. For parents the emotional connection with their child constituted a source of meaning as well as a foundation, on which they based their decisions on.

A therapeutic relationship and a supportive environment can be established by healthcare professionals by noticing, encouraging the unique bond between parents and their children, as well as by reflecting and addressing the parents’ challenging situation.

On October 5–6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: “Leave No One Behind — Equity in Access to Palliative Care.” We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3–4, 2022.

Description of the 2nd 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 around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines.

The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.

Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called “informal caregivers.” The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down. To achieve this goal, the written files of 2 Portuguese palliative care institutions were analyzed.

An inductive thematic analysis was conducted, focusing on the contact between health professionals and family caregivers and based on the notes taken by health professionals.

Three main overarching themes were identified: (1) burden, (2) intra-family impact of the illness, and (3) network vulnerabilities. Included in this are the emphasis on the role of the family and social support, the high levels of psychological morbidity and caregiver burden present over this period, and a great need for information about the illness.

This study provided a broader awareness regarding the daily struggle experienced by family caregivers, particularly those who juggle between “roles.” It is vital to understand the scope of the obstacles experienced by caregivers during the terminal phase of their loved one’s illness, given how important it is to address the family’s needs. Future studies and practitioners should consider these observations and topics when considering new approaches for this population, as they ought to be quite focused and short in time in order to meet people’s needs.

Receiving bad news about one’s health can be devastating, yet little is known about how the therapeutic nature of the environment where bad news is delivered affects the experience. The current study aimed to explore how patients and their families were affected by the language and the built, natural, social, and symbolic environments when receiving bad news, through the Therapeutic Landscapes theoretical framework.

Patients diagnosed with a life-limiting illness living in regional Victoria who had a hospital admission within 24 months and a diagnostic/prognostic conversation were invited to participate, as well as a family member who witnessed the conversation. Participants were recruited through social media and snowballing, resulting in 14 online semi-structured interviews being conducted between November 2021 and March 2022, audio-recorded, and transcribed verbatim. Reflexive thematic analysis was used to develop the themes.

Fourteen semi-structured interviews were conducted with women aged between 30 and 77 years. Interviews lasted between 45 and 120 minutes, with an average of 69 minutes, and were conducted online or via mobile phone. Four central themes were developed: “Hearing bad news for the first time,” “Preferences for having hard conversations,” “Creating a sense of safety for ongoing care,” and “The therapeutic nature of the ward.”

This body of work will help inform practice and future policy regarding bad news delivery and the design and aesthetics of environments where bad news is delivered. It is essential that bad news is delivered within a quiet, calm, and emotionally safe environment within a supportive therapeutic relationship.

This research was conducted to determine the psychometric characteristics of the “Spiritual Needs Assessment Scale of Patients with Cancer” in Turkish patients with cancer.

This study used psychometric methods to test the adapted tool. The participants of this study were patients with a diagnosis of cancer in the outpatients and inpatients medical oncology and hematology clinics of a university hospital in Turkey. 400 patients determined by power analysis were included in the study. The data were collected in 2018. We used the descriptive form and “Spiritual Needs Assessment Scale of Patients with Cancer.” The obtained data were evaluated using Cronbach's α reliability coefficient, Pearson's correlation coefficient, and factor analysis.

In the present study, the factor loads of the items were sufficient and explained 39.18% of the total variance. Cronbach's α value of the scale was 0.85.

As a result, it was found that the validity and reliability of the “Spiritual Needs Assessment Scale of Patients with Cancer” were ensured and they could be used in Turkish patients.

Despite the clinical use of dignity therapy (DT) to enhance end-of-life experiences and promote an increased sense of meaning and purpose, little is known about the cost in practice settings. The aim is to examine the costs of implementing DT, including transcriptions, editing of legacy document, and dignity-therapists’ time for interviews/patient’s validation.

Analysis of a prior six-site, randomized controlled trial with a stepped-wedge design and chaplains or nurses delivering the DT.

The mean cost per transcript was $84.30 (SD = 24.0), and the mean time required for transcription was 52.3 minutes (SD = 14.7). Chaplain interviews were more expensive and longer than nurse interviews. The mean cost and time required for transcription varied across the study sites. The typical total cost for each DT protocol was $331–$356.

DT implementation costs varied by provider type and study site. The study’s findings will be useful for translating DT in clinical practice and future research.

Patients suffering from advanced disease face different care transitions. The transition from acute to palliative care is challenging and may lead to the discontinuity of care. Family caregivers become important sources of information, as patients begin to experience difficulties in coping with emotional transition events. The Care Transition Measure was developed to evaluate care transitions as experienced by the elderly. It has never been used in palliative care. The aim of this study was to test the validity and reliability of a modified version of the Palliative Care Transition Measure, specifically the Palliative Care Transition Measure for Caregivers (PCTM-C).

The study included two main phases. Phase I focused on the construction of a modified version of the Palliative Care Transition Measure through two focus groups and by computing the content validity index. Phase II focused on testing the psychometric properties of the PCTM-C on 272 family caregivers through confirmatory factor analysis.

The content validity index for each of the items was higher than 0.80, whereas that for the scale was 0.95. The model tested with confirmatory factor analysis fitted the data well and confirmed that the transition measures referred to communication, integrated care and a trusting-relationship, and therefore the core dimensions of continuity according to existing conceptual models. The internal consistency was high (Cronbach's alpha = 0.94).

The PCTM-C proved to be a suitable measure of the quality of such transitions. It may be used in clinical practice as a continuity quality indicator and has the potential to guide interventions to enhance family caregivers’ experience of care continuity.

To explore the expectations of Brazilian and German patients regarding metastatic cancer and palliative chemotherapy.

Interviews with 48 metastatic cancer patients from Brazil and Germany were conducted. The interviews were transcribed and analyzed using the thematic analysis approach to identify common themes. The sociodemographic data were collected using an instrument developed by the authors.

A total of 48 patients participated in the study (58% were Brazilian and 42% were German). Of all participants, 35% were men and 65% were women. The participants’ mean age was 41 years. The general idea captured from the interviewees’ speech was that their diseases were curable or “while there is chemotherapy, there is life”; thus, the data analysis enabled the elaboration of the central theme, entitled “Mistaken expectations of metastatic cancer patients regarding palliative chemotherapy: While there is chemotherapy, there is life,” with 5 subthemes, namely: (1) communication and expectations; (2) normal life; (3) the person behind the disease; (4) religiosity and spirituality; and (5) the fortitude to choose between continuing or discontinuing treatment.

Regardless of cultural aspects, patients with metastatic cancer on palliative chemotherapy tend to believe in the healing potential of treatments. Dividing expectations only into curable or incurable is insufficient, as even patients who have acknowledged the incurability of their disease expect to live, as long as they remain under treatment as if the disease did not exist.

To investigate the spiritual care needs and their attributes among Chinese elders hospitalized for severe chronic heart failure (CHF) based on the Kano model, in order to provide a reference for improving the quality and satisfaction of spiritual care.

An observational design was implemented, and the STROBE Checklist was used to ensure quality reporting of the study. The demographic characteristics questionnaire, the Nurse Spiritual Therapeutics Scale, and the Kano model–based Nurse Spiritual Therapeutics Attributes Scale were used. A convenience sample of 451 patients were selected from 2 hospitals. Descriptive statistics, and Kano model were used to analyze the data.

The total score of spiritual care needs was 29.95 ± 7.51. Among the 12 items, 3 items were attractive attributes, all of which were located in Reserving Zone IV; 5 items were one-dimensional attributes, of which 3 were located in Predominance Zone I and 2 were located in Improving Zone II; 2 items were must-be attributes, all of which were located in Improving Zone II; and 2 items were indifference attributes, all of which were located in Secondary Improving Zone III.

The spiritual care needs among Chinese elders hospitalized for severe CHF were moderate. The must-be and one-dimensional attributes mainly focus on “creating a good atmosphere” and “sharing self-perception” dimensions, while attractive attributes mainly focus on “sharing self-perception” and “helping thinking” dimensions. It is suggested that hospital authority should develop and innovate attractive attributes on the basis of maintaining and perfecting must-be and one-dimensional attributes, and objectively analyze and optimize indifference attributes.

Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care.

In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0–10 visual analog scale. For each child, a health professional also rates the child’s emotional status using the same scale.

The average child’s emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children’s emotional well-being significantly higher than professionals (t-test = 4.6, p-value < .001). Health professionals rated the children’s emotional well-being significantly lower when the disease status was progressive than when the disease was not (t-test = 2.2, p-value = .037).

Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation.

The usefulness of the age-adjusted Charlson Comorbidity Index (ACCI) as a gauge of the impact of comorbidity on survival is known in the geriatric population. In palliative care, there is little research studying the correlation between comorbidity and survival in the advanced stages of oncological disease. The aim of our study was to explore the impact of comorbidity, measured with the ACCI, on survival in our patients. Our hypothesis was that higher ACCI scores would be associated with lower survival rates after the first visit.

We conducted a prospective observational study over one year. Patients were attended by palliative home care teams. The main variables were: survival from metastatic disease after the first visit and ACCI score on the first visit. We also employed a descriptive analysis and a Kaplan–Meier survival analysis, including different ranges of ACCI scores.

The final sample included 66 subjects. The standard patient was a 76-year-old man with lung cancer who had received chemotherapy. The overall average ACCI score was 10.45. Significant differences were found between the different locations of metastatic disease (greater survivals in breast, ovary, and prostate; p = 0.005) and some treatments (hormone and radiotherapy; p = 0.001 for each), but not from the first visit. We found lower survival rates among lung cancer patients with higher comorbidity (ACCI ≥ 11, p = 0.047), with no differences on other primary locations or overall values.

The data show that comorbidity measured by the ACCI may be an interesting prognostic factor during the late stages of disease, as we have found in lung cancer. More research is certainly needed.

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.