To explore patients’ awareness levels of palliative care (PC) and how this awareness shapes their preferences regarding the timing and approach for discussing it.

The study, conducted at a prominent institution specializing in oncology care, enrolled women aged 18–75 years who had been diagnosed with breast cancer. Patients completed guiding questions: Do you know what PC is?, When is the most appropriate time and the most appropriate way to discuss PC?. The interviews were conducted exclusively via video call and were recorded, transcribed, and then deleted.

The study involved 61 participants, averaging 49 years old. Almost half (47.5%) had completed high school. Qualitative data analysis revealed 9 thematic categories. Regarding the first question, 2 divergent categories emerged: care for life and threatening treatment. For the second question, opinions diverged into 4 categories: At an early stage, mid-course of the disease, as late as possible, and no time at all. For the third question, 3 categories emerged: communication and support, care setting and environment, and improving the PC experience.

This study reveals diverse perspectives on patients’ awareness and preferences for discussing PC, challenging the misconception that it’s only for end-of-life (EOL) situations. Comprehending PC influences when and how patients discuss it. If tied solely to EOL scenarios, discussions may be delayed. Conversely, understanding its role in enhancing advance support encourages earlier conversations. Limited awareness might delay talks, while informed patients actively contribute to shared decision-making. Some patients prefered early involvement, others find mid-treatment discussions stress-relieving. Community support, quiet environments, and accessible resources, underscoring the importance of a calm, empathetic approach, emphasizing the importance of understanding its role in advance support and providing valuable implications for enhancing patient care practices, theories, and policies.

Dignity Therapy (DT) is a brief form of psychotherapy that helps people with life-threatening illnesses and their loved ones cope with emotional pain and demoralization. Unfortunately, not everyone has the opportunity to receive DT during their lifetime. Posthumous Dignity Therapy (PDT) was then devised to be administered to bereaved family members. However, PDT has not yet been validated or studied in the specific cultural and linguistic context of Portuguese-Brazilians. This study aims to fill this gap by validating PDT for the Portuguese (Brazilian) context.

Using Beaton’s methodology, including the processes of translation, synthesis, back-translation, evaluation by an expert committee, and pre-testing, the PDT Schedule of Questions underwent validation and cultural adaptation. The research was conducted in a Palliative Care Unit at a tertiary cancer hospital in Brazil.

The questionnaire was translated, back-translated, and evaluated by the panel of experts, obtaining a Content Validity Index of 0.97. During the pretest phase, it was observed that the participant’s interview method needed to be changed from remote (telephone or videoconference) to in-person. Additionally, it was necessary to modify some terms related to death and dying, as they caused discomfort to the participants. As a result of this process, the PDT was modified, and adapted to the Brazilian cultural and linguistic reality.

This validation study will be significant for future DT research from the caregivers’ perspective and for projects aiming to implement this therapeutic modality in palliative care units, in addition to helping participants remember their loved ones better by providing a tangible legacy document that assists them emotionally and materially in coping with the grieving process.

To identify the patients who are most likely to participate in discussions about palliative care (PC) and advance care planning (ACP), and to determine their preferred timing and approach of discussion.

The study included women aged 18–75 years diagnosed with breast cancer. In the quantitative phase, sociodemographic and clinical characteristics, knowledge, decision-making, and stigmas were evaluated. The qualitative phase included questions about patients’ understanding, timing, and method of discussing PC and ACP, which were analyzed by Bardin’s content analysis.

In Phase 1, a total of 115 participants were included, with 53.04% completing both phases and 46.96% declining further participation. Those who completed both phases exhibited higher rates of marriage and educational attainment, while those who declined Phase 2 had a higher prevalence of advanced-stage cancer and palliative treatment. Completion of both phases was associated with a greater knowledge of reality and increased awareness of PC and ACP. Furthermore, the qualitative analysis revealed 5 convergent themes: timing, demystification, patient empowerment, misconception elimination, and open communication. These themes informed the development of a conceptual model that provides a framework for discussing PC and ACP with patients at different stages of cancer diagnosis and treatment, highlighting appropriate and inappropriate approaches and timing.

Early discussion is beneficial, but withholding information or infringing on autonomy should be avoided. The study reveals that married and highly educated individuals tend to be more receptive to these discussions. However, patients with late-stage cancer tend to decline participation. Patients value open communication, demystification of PC, and empowering discussions that eliminate misunderstandings. Efforts should be made to reach patients with limited familiarity, particularly those with late-stage cancer, to increase their receptiveness to enable well-informed decision-making.

Dignity therapy (DT) was developed to help patients at their end of life to reframe and give meaning to their illness process. The DT question protocol focuses on personhood and important aspects of the individual’s life. This study aimed to translate and culturally adapt the Dignity Therapy Question Protocol (DTQP) to Brazilian Portuguese.

This was a descriptive and methodological study, and cross-cultural adaptation process comprised 4 stages: (1) translation and synthesis of English original version protocol into Brazilian Portuguese, (2) back translation, (3) experts committee, and (4) pretest.

The Portuguese version of the DTQP – Protocolo de Perguntas sobre Terapia da Dignidade – demonstrated a content validity index of 1 for all equivalences. The initial sample consisted of 41 participants (9 [21.9%] refused to participate and 1 [2.43%] dropped out). The pretest was applied to 30 (73.1%) participants, 15 of them were female and the mean age was 53.4 years. The final version consisted of 10 questions that were approved by the original authors who affirmed that the DTQP Brazilian Portuguese version maintained the original English characteristics.

The Brazilian cultural adaptation of the DTQP was well understood by patients. It will be very useful in palliative care clinical practice for patients nearing end of life. The adapted version to Brazilian Portuguese will facilitate future studies using the DTQP.

Although the literature recognizes the participation of patients in medical decisions as an important indicator of quality, there is a lack of consensus regarding the influence of advance directives (ADs) on reducing aggressive measures during end-of-life care involving cancer patients.

A systematic review was conducted to analyze the influence of ADs on reducing aggressive end-of-life care measures for cancer patients.

We searched the Medline, Embase, Web of Science, and Lilacs databases for studies published until March 2018 using the following keywords, without language restrictions: “advance directives,” “living wills,” “terminal care,” “palliative care,” “hospice care,” and “neoplasms.” Article quality was assessed using study quality assessment tools from the Department of Health and Human Services (NHLBI).

A total of 1,489 studies were identified; 7 met the inclusion criteria. The studies were recently published (after 2014, 71.4%). Patients with ADs were more likely to die at the site of choice (n = 3) and received less chemotherapy in the last 30 days (n = 1). ADs had no impact on intensive care unit admission (n = 1) or hospitalization (n = 1). One study found an association between ADs and referral to palliative care, but other did not find the same result.

Of the seven articles found, four demonstrated effects of ADs on the reduction in aggressive measures at the end of life of cancer patients. Heterogeneity regarding study design and results and poor methodological quality are challenges when drawing conclusions.

To evaluate the psychometric properties of the Brazilian version of the Shame and Stigma Scale (SSS) in a sample of patients with head and neck cancers (HNC).

This is a validation study carried out in a Brazilian cancer hospital. Patients over 18 years old who knew about their HNC diagnosis were consecutively recruited, answering the SSS, the Functional Assessment of Cancer Therapy (General and Head and Neck supplement) questionnaire, and the University of Washington Quality of Life Questionnaire. Internal consistency, test-retest procedure, convergent validity, and responsiveness analysis were the psychometric properties evaluated.

A total of 122 HNC patients were included. The SSS showed appropriate internal consistency (alphas ranging from 0.71 to 0.86), test-retest reliability (higher than 0.92 with exception of the “Regret domain”), and convergent validity. The responsiveness analysis with 38 patients was able to discriminate the scores before and after prosthetic procedures.

The Brazilian Portuguese version of the SSS may be considered a valid and reliable instrument for the evaluation of Brazilian patients with HNC. Future SSS validation studies are welcome in other developing countries in order to make cancer health providers aware of these negative feelings in their HNC patients.

The objectives of the present study were to describe and compare the characteristics and reports of end-of-life experiences (ELEs) by healthcare professionals at different institutions and to investigate the influence of religious beliefs on these reports.

A multicenter study was carried out in Brazil that included six nursing homes (NHs), a cancer hospital (ONC), and a palliative care (PC) unit. Sociodemographic data, ELE reports (Fenwick's questionnaire), religiosity (the Duke Religion Index), spirituality (the Spirituality Self-Rating Scale), and mental health (the DASS-21 questionnaire) were assessed. The analysis was performed using ANOVA and chi-square tests in order to compare ELE perceptions in these different settings.

A total of 133 healthcare professionals (46 ONC, 36 PC, and 51 NH) were interviewed, 70% of whom recounted at least one ELE report in the previous five years. The most common ELEs were “visions of dead relatives collecting the dying person” (88.2%), “a desire to mend family rifts” (84.9%), and “visions of dead relatives near the bed providing emotional comfort” (80.6%). Most healthcare professionals (70–80%) believed that these experiences had a spiritual significance and were not due to biological effects. Comparison among settings revealed that those working in the PC unit had more reports, a greater openness about the issue, and more interest in training. Individual religious beliefs had no influence on perception of ELEs.

Our study revealed that ELE reports are not uncommon in clinical practice and seem to be little influenced by religious or spiritual beliefs. Although strongly reported in all settings, palliative care professionals tend to be more open to this issue and have a stronger perception of ELEs.

Although “fatigue” and “depression” are well-accepted clinical terms in the English language, they are ill defined in many other languages, including Portuguese. We aimed to investigate the most appropriate words to describe cancer-related fatigue (CRF) and depression in Brazilian cancer patients.

The interviewers read to patients two clinical vignettes describing fatigued patients and two others describing depressed patients. Participants were asked to choose from among “fatigue,” “tiredness,” “weakness,” “depression,” and “sadness” the best and worst terms to explain the vignettes. In addition, they were administered an instrument containing numeric rating scales (NRSs), addressing common symptoms, including the aforementioned terms. Pearson correlation analysis and accuracy diagnostic tests were conducted using the Hospital Anxiety and Depression Scale (HADS) and the Functional Assessment of Cancer Treatment–Fatigue (FACIT–F) as references.

Among the 80 participants, 40% reported that the best term to explain the concept of CRF was “tiredness,” and 59% chose “sadness” as the best descriptor of depression. Regarding diagnostic accuracy, the areas under the curve (AUCs) for “fatigue,” “weakness,” and “tiredness” were 0.71, 0.81, and 0.76, respectively; the AUCs for “depression” and “sadness” ranged from 0.81 to 0.91 and 0.73 to 0.83, respectively. Negative correlations were found among FACIT–F fatigue subscale scores and NRS scores for “fatigue” (r = –0.58), “tiredness” (r = –0.67), and “weakness” (r = –0.62). Regarding depression, there were positive correlations between HADS–D scores and both NRS for “depression” (r = 0.61) and “sadness” (r = 0.54).

“Tiredness” was considered the best descriptor of CRF. Taking into consideration the clinical correlation with depression scores, the term “depression” was accepted as the best term to explain the concept of depression.