Go Wish card game-exploring end-of-life wishes of patients in oncology palliative care: a qualitative study.

BACKGROUND: Among the methods that promote quality of life and care, discussing and remembering end-of-life (EOL) wishes for future care may contribute to decision-making about care and the promotion of a good death. Our aim was to investigate the most significant EOL desires among Brazilian cancer patients receiving palliative care (PC). METHODS: This was an exploratory, descriptive, and qualitative study conducted in a Palliative Care Oncology Unit. Fifteen patients played the Go Wish card game (GWCG), choosing and categorizing cards into themes as very important, more or less important, and not important at all. The ten most important cards were discussed, and categories were defined for each card. Cards with the highest frequencies of choice were described. Patients were also asked, "What did playing the cards mean to you?". All data were analyzed using Bardin's content analysis and generated a word cloud to interpret the participants' narratives. RESULTS: Out of the 36 cards, card 19, "I want my family and friends close to me", was the most frequently chosen. Out of the 15 patients studied, only one reported that they initially did not enjoy playing the cards. In this study, the GWCG was effective in fulfilling 90% of the patients' wishes, and this was only possible with the support of the researchers, members of the multi-professional team, and patients' families. CONCLUSIONS: The use of the GWCG in the oncology PC setting made an important contribution to open discussions about patients' values and preferences, as well as being an easy-to-use, understandable, and flexible tool. Prioritizing the fulfillment of patients' wishes was one of the main strengths of this study. Our study suggests working with these wishes as a framework for person-centered care.

Preference and actual place-of-death in advanced cancer: prospective longitudinal study.

OBJECTIVES: To evaluate the preferred place-of-death (PPoD) among patients with advanced cancer over time, and the concordance between preferred and actual place-of-death. METHODS: Prospective cohort study. A total of 190 patients with advanced cancer and their caregivers (n=190) were interviewed every 3 months, from study enrolment to 12 months (M0, M1, M2, M3, M4). PPoD data were obtained under four different end-of-life scenarios: (1) severe clinical deterioration without further specification; (2) clinical deterioration suffering from severe symptoms; (3) clinical deterioration receiving home-based visits; and (4) clinical deterioration receiving home-based visits and suffering from severe symptoms. RESULTS: Home was the most common PPoD over time among patients in scenarios 1 (n=121, 63.7%; n=77, 68.8%; n=39, 57.4%; n=30, 62.5%; n=23, 60.5%) and 3 (n=147, 77.4%; n=87, 77.7%; n=48, 70.6%; n=36, 75.0%; n=30, 78.9%). PPoD in palliative care unit (PCU) and hospital were most frequent at baseline in scenario 2 (n=79, 41.6%; n=78, 41.1%), followed by hospital over time (n=61, 54.5%; n=45, 66.2%; n=35, 72.9%; n=28, 73.7%). During the curse of illness, 6.3% of patients change their PPoD in at least one of end-of-life scenario. About 49.7%, 30.6% and 19.7% of patients died in PCU, hospital and home, respectively. Living in rural area (OR=4.21), poor health self-perception (OR=4.49) and pain at the last days of life (OR=2.77) were associated with death in PPoD. The overall agreement between last preference and actual place-of-death was 51.0% (k=0.252). CONCLUSION: Home death was not the preferred place for a large number of patients when this option was presented within a clinical context scenario. The PPoD and actual place-of-death were depending on the clinical situation.

Burial or cremation? Factors associated with preferences among patients with cancer in Brazil: a cross-sectional study.

BACKGROUND: People living with life-limiting illnesses and their family caregivers consistently emphasize the importance of preparing for imminent death, with planned funerals being a common aspect of this preparation. Few studies have described the funeral rituals or post-mortem preferences of patients with cancer. OBJECTIVE: To evaluate the percentage of patients with cancer who wish to be cremated and to identify the factors associated with this preference. DESIGN AND SETTING: Cross-sectional study conducted at Barretos Cancer Hospital. METHODS: A total of 220 patients with cancer completed a Sociodemographic and Clinical Questionnaire, the Duke University Religiosity Index, and burial or cremation preferences. Binary Logistic Regression was performed to identify independent variables associated with cremation. RESULTS: Of the 220 patients, 25.0% preferred cremation and 71.4% preferred burial. Talks about death with family or close friends in their daily life (odds ratio, OR = 2.89; P = 0.021), patients that answered "other" (unsure, tends not be true and not true) for religious beliefs are what really lie behind my whole approach to life (OR = 20.34; P = 0.005), and education 9 to 11 years (OR = 3.15; P = 0.019) or ≥ 12 years (OR = 3.18; P = 0.024) were associated with cremation preference. CONCLUSION: Most patients with Cancer in Brazil prefer burial after death. Discussions about death, religious beliefs and involvement, and educational level seem to influence the preference for cremation. A deeper understanding of ritual funeral preferences and their associated factors may guide policies, services, and health teams in promoting the quality of dying and death.

Translation, Validity and Internal Consistency of the Quality of Dying and Death Questionnaire for Brazilian families of patients that died from cancer: a cross-sectional and methodological study

ABSTRACT BACKGROUND: The Quality of Dying and Death Questionnaire (QoDD) may prove to be an important evaluation tool in the Brazilian context, and, therefore, can contribute to a more precise evaluation of the dying and death process, improving and guiding the end-of-life patient care. OBJECTIVE: To translate and cross-culturally adapt the QoDD into Brazilian Portuguese and measure its validity (convergent and known-groups) and internal consistency DESIGN AND SETTING: A cross-sectional, methodological study was conducted at the Hospital de Câncer de Barretos, Brazil METHODS: A total of 78 family caregivers participated in this study. Semantic, cultural, and conceptual equivalences were evaluated using the content validity index. The construct validity was assessed through convergent validation and known groups analysis [presence of family members at the place of death; feel at peace with dying; and place of death (hospital versus home; hospital versus Palliative Care)]. Internal consistency was evaluated using Cronbach's alpha. RESULTS: The questionnaire was translated into Brazilian Portuguese and presented evidence of a clear understanding of its content. Cronbach's alpha values were ≥ 0.70, except for the domains of treatment preference (α = 0.686) and general concerns (α = 0.599). The convergent validity confirmed a part of the previously hypothesized correlations between the Palliative Care Outcome Scale-Brazil (POS-Br) total scores and the QoDD domain scores. The QoDD-Br domains could distinguish the patients who died in palliative care and general wards. CONCLUSION: The QoDD-Br is a culturally adapted valid instrument, and may be used to assess the quality of death of cancer patients.

Burial or cremation? Factors associated with preferences among patients with cancer in Brazil: a cross-sectional study

ABSTRACT BACKGROUND: People living with life-limiting illnesses and their family caregivers consistently emphasize the importance of preparing for imminent death, with planned funerals being a common aspect of this preparation. Few studies have described the funeral rituals or post-mortem preferences of patients with cancer. OBJECTIVE: To evaluate the percentage of patients with cancer who wish to be cremated and to identify the factors associated with this preference. DESIGN AND SETTING: Cross-sectional study conducted at Barretos Cancer Hospital. METHODS: A total of 220 patients with cancer completed a Sociodemographic and Clinical Questionnaire, the Duke University Religiosity Index, and burial or cremation preferences. Binary Logistic Regression was performed to identify independent variables associated with cremation. RESULTS: Of the 220 patients, 25.0% preferred cremation and 71.4% preferred burial. Talks about death with family or close friends in their daily life (odds ratio, OR = 2.89; P = 0.021), patients that answered "other" (unsure, tends not be true and not true) for religious beliefs are what really lie behind my whole approach to life (OR = 20.34; P = 0.005), and education 9 to 11 years (OR = 3.15; P = 0.019) or ≥ 12 years (OR = 3.18; P = 0.024) were associated with cremation preference. CONCLUSION: Most patients with Cancer in Brazil prefer burial after death. Discussions about death, religious beliefs and involvement, and educational level seem to influence the preference for cremation. A deeper understanding of ritual funeral preferences and their associated factors may guide policies, services, and health teams in promoting the quality of dying and death.

Translation, Validity and Internal Consistency of the Quality of Dying and Death Questionnaire for Brazilian families of patients that died from cancer: a cross-sectional and methodological study.

BACKGROUND: The Quality of Dying and Death Questionnaire (QoDD) may prove to be an important evaluation tool in the Brazilian context, and, therefore, can contribute to a more precise evaluation of the dying and death process, improving and guiding the end-of-life patient care. OBJECTIVE: To translate and cross-culturally adapt the QoDD into Brazilian Portuguese and measure its validity (convergent and known-groups) and internal consistency. DESIGN AND SETTING: A cross-sectional, methodological study was conducted at the Hospital de Câncer de Barretos, Brazil. METHODS: A total of 78 family caregivers participated in this study. Semantic, cultural, and conceptual equivalences were evaluated using the content validity index. The construct validity was assessed through convergent validation and known groups analysis [presence of family members at the place of death; feel at peace with dying; and place of death (hospital versus home; hospital versus Palliative Care)]. Internal consistency was evaluated using Cronbach's alpha. RESULTS: The questionnaire was translated into Brazilian Portuguese and presented evidence of a clear understanding of its content. Cronbach's alpha values were ≥ 0.70, except for the domains of treatment preference (α = 0.686) and general concerns (α = 0.599). The convergent validity confirmed a part of the previously hypothesized correlations between the Palliative Care Outcome Scale-Brazil (POS-Br) total scores and the QoDD domain scores. The QoDD-Br domains could distinguish the patients who died in palliative care and general wards. CONCLUSION: The QoDD-Br is a culturally adapted valid instrument, and may be used to assess the quality of death of cancer patients.

Anticancer Treatment Goals and Prognostic Misperceptions among Advanced Cancer Outpatients.

(1) Background: In the context of cancer incurability, the communication processes involving clinicians and patients with cancer are frequently complex. (2) Methods: A cross-sectional study that investigated outpatients with advanced cancers and their oncologists. Both were interviewed immediately after a medical appointment in which there was disease progression and/or clinical deterioration, and were asked about the patient's chance of curability and the goals of the prescribed cancer treatment. The patients were asked whether they would like to receive information about prognosis and how they would like to receive it. The analyses of agreement on perceptions were performed using the Kappa's test. (3) Results: the sample consisted of 90 patients and 28 oncologists. Seventy-eight (87.6%) patients answered that they wanted their oncologist to inform them about their prognosis; only 35.2% (n = 31) of them said they received such information at their present appointment. Regarding how they would prefer prognostic disclosure, 61.8% (n = 55) mentioned that the oncologist should consider ways to keep the patient's hope up; 73% (n = 65) of the patients reported odds >50% of cure. The agreement between oncologists' and their patients' perceptions regarding the treatment goals and curability was slight (k = 0.024 and k = 0.017, respectively). (4) Conclusions: The perceptions of patients and their oncologists regarding the goals of treatment and their chances of cure were in disagreement. New approaches are needed to improve the communication process between oncologists and patients with advanced cancer.

Where do Brazilian cancer patients prefer to die? Agreement between patients and caregivers.

CONTEXT: Preferred place-of-death (PPoD) is considered an important outcome for the development of appropriate models of care and for improving health policies in countries with underdeveloped palliative care (PC) OBJECTIVES: To determine the concordance between the PPoD of a sample of Brazilian seriously-ill cancer patients and their caregivers, and its associated factors under four different end-of-life (EOL) scenarios: 1) health deterioration in the overall context; 2) health deterioration with severe and uncomfortable symptoms; 3) health deterioration receiving home-based visits as needed; 4) health deterioration receiving home-based visits as needed, when suffering severe and uncomfortable symptoms METHODS: Cross-sectional study at a large Brazilian cancer center, between February 2019 and July 2021. 190 adult cancer patients and their caregivers (n = 190) were analyzed RESULTS: Patient and/or caregiver PPoD concordance for EOL scenario one: 64% vs. 43% for death at home, 22% vs. 30% for death in a PC unit, 14% vs. 27% for death in hospital. Higher patient and/or caregiver PPoD concordance was found for death in hospital (41%; 49%) in EOL scenario two, and for death at home for scenario three (77%; 74%). Agreement coefficient was moderate for scenario two (k = 0.430; P < 0.001), and fair for EOL scenarios one, three and four (k = 0.237, P < 0.001; k = 0.296, P < 0.001; k = 0.307, P < 0.001, respectively). Associated disagreement factors were: performance status (OR:3.03), self-perceived health (OR: 6.99), marital status (OR:2.92), and hospital and/or emergency room proximity (OR:4.11). The presence of relevant persons (42.3% vs. 44.2%), followed by spirituality (38.5% vs. 27.9%) and the place-of-death (14.0% vs. 18.4%), were the most important factors in the EOL, when comparing patients and care givers opinions, respectively CONCLUSION: Low agreement between patients and caregivers on PPoD was identified. EOL clinical factors and deterioration, and PC support seem to influence PPoD.

Prevalence of burnout and predictive factors among oncology nursing professionals: a cross-sectional study

ABSTRACT BACKGROUND: Burnout is a syndrome that mostly affects professionals working in contact with patients and their caregivers. In oncology care, nursing professionals are constantly required to provide emotional support for patients and their caregivers, throughout the process of becoming ill, suffering and dying. OBJECTIVE: To evaluate the prevalence and factors associated with burnout in a sample of nursing professionals at a cancer hospital. DESIGN AND SETTING: Cross-sectional study conducted at Hospital de Câncer de Barretos. METHODS: The study population comprised 655 nursing professionals. Burnout syndrome was assessed using the Maslach Burnout Inventory Human Service Survey. Univariate analysis and binary logistic regression models were used to identify independent predictors associated with burnout. RESULTS: Among 304 nursing professionals included in the study, 27 (8.9%) were classified as presenting burnout according to the two-dimensional criteria, and four (1.3%) were classified based on the three-dimensional criteria. Workplace characteristics were not associated with burnout, while single marital status (odds ratio, OR = 2.695; P = 0.037), perceived workplace stressors, such as impatience with colleagues (OR = 3.996; P = 0.007) and melancholy (OR = 2.840; P = 0.021) were considered to be predictors of burnout. Nursing professionals who would choose the profession again (OR = 0.214; P = 0.001) were least likely to present burnout. CONCLUSION: Perceived workplace stressors are strongly associated with burnout. Strategies focusing on restructuring of daily work processes and on activities that stimulate positive relationships are important for professionals' health because motivation to continue working in oncology nursing has a protective effect against burnout.

Prevalence of burnout and predictive factors among oncology nursing professionals: a cross-sectional study.

BACKGROUND: Burnout is a syndrome that mostly affects professionals working in contact with patients and their caregivers. In oncology care, nursing professionals are constantly required to provide emotional support for patients and their caregivers, throughout the process of becoming ill, suffering and dying. OBJECTIVE: To evaluate the prevalence and factors associated with burnout in a sample of nursing professionals at a cancer hospital. DESIGN AND SETTING: Cross-sectional study conducted at Hospital de Câncer de Barretos. METHODS: The study population comprised 655 nursing professionals. Burnout syndrome was assessed using the Maslach Burnout Inventory Human Service Survey. Univariate analysis and binary logistic regression models were used to identify independent predictors associated with burnout. RESULTS: Among 304 nursing professionals included in the study, 27 (8.9%) were classified as presenting burnout according to the two-dimensional criteria, and four (1.3%) were classified based on the three-dimensional criteria. Workplace characteristics were not associated with burnout, while single marital status (odds ratio, OR = 2.695; P = 0.037), perceived workplace stressors, such as impatience with colleagues (OR = 3.996; P = 0.007) and melancholy (OR = 2.840; P = 0.021) were considered to be predictors of burnout. Nursing professionals who would choose the profession again (OR = 0.214; P = 0.001) were least likely to present burnout. CONCLUSION: Perceived workplace stressors are strongly associated with burnout. Strategies focusing on restructuring of daily work processes and on activities that stimulate positive relationships are important for professionals' health because motivation to continue working in oncology nursing has a protective effect against burnout.