The color purple: Purple urine bag syndrome: Identifying the phenomenon to ease unnecessary anxiety, fear, and distress.

OBJECTIVES: Purple urine bag syndrome (PUBS) is a condition that causes an intense purple discoloration of the urine, predominately in frail, dependent, and bedridden persons who are chronically catheterized and have urinary tract infections. Despite being considered a benign syndrome, PUBS can cause great anxiety, fear, and distress in health professionals, chronically ill persons, and caregivers or family members who provide care. METHODS: We report the case of a 98-year-old institutionalized woman with Alzheimer's dementia with a long-term urinary catheter who developed PUBS. RESULTS: Although alarming and distressing for the resident and the health-care team, PUBS was resolved by treating the underlying urinary tract infection and applying good genital hygiene and catheter replacement. SIGNIFICANCE OF RESULTS: Identifying PUBS and its clinical features and management proved to be significantly helpful in ameliorating the anxiety, fear, and distress around the phenomenon.

Ketamine subcutaneous continuous infusion for depressive symptoms at home: A case report beyond pain use.

OBJECTIVES: Ketamine has been widely used in refractory pain as an opioid adjuvant. Evidence suggests that ketamine can also have an essential role in easing depressive symptoms. Its rapid onset of action makes it a valuable choice in palliative care. METHODS: We present a case of a 70-year-old man with stage IV renal carcinoma and bone metastasis. The main symptoms included neuropathic pain, depression, and a persistent and severe desire for death. RESULTS: We started continuous subcutaneous infusion with morphine 30 mg and ketamine 100 mg/day. The dose of ketamine was incremented to the maximum of 250 mg/day. During the 28-day treatment, we observed an overall improvement in neuropathic pain, depressive symptoms, and other end-of-life psychological aspects of distress. Only minor psychological side effects were identified, which were controlled by using midazolam in the continuous subcutaneous infusion. SIGNIFICANCE OF RESULTS: Some studies have already demonstrated the benefits of ketamine use in alleviating depression, using parental infusion or oral formulas, which are administered in hospice care. Our report enhances the benefit of the subcutaneous route for palliative patients cared for at home.

The European Portuguese Posthumous Dignity Therapy Schedule of Questions: Initial development and validation.

OBJECTIVE: Dignity therapy (DT) is a brief psychotherapeutic intervention with beneficial effects in the end-of-life experience. Since it provides a continuing bond between the bereaved and their loved ones, we speculated that it could be offered as a novel bereavement intervention following the patient's death. We aimed to develop, translate, and validate the Posthumous DT Schedule of Questions (p-DT-SQ), for administration with bereaved relatives or friends. METHOD: The original DT-SQ was adapted for application with bereaved relatives or friends. It was translated and back-translated to European Portuguese and revised by an expert committee. Content validity was assessed by the Content Validity Coefficient (CVC). The instrument was tested in a sample of 50 individuals from a large Senior Residence in Lisbon (10 elderly people and 40 healthcare professionals), who assessed face validity. RESULTS: The p-DT-SQ showed very good CVC (0.94) and face validity: it was considered clear, easy to understand, reasonable in length, and not difficult to answer. Participants felt comfortable answering the p-DT-SQ and felt it could positively affect the way themselves or others would remember their loved ones, allowing an understanding of the deceased's concerns, interests, and values. SIGNIFICANCE OF RESULTS: We created and validated an adapted version of the DT-SQ to be used posthumously by bereaved family and friends. The European Portuguese version of the p-DT-SQ is clear, comprehensible, and aligned with the fundamentals of DT. While our data suggest its beneficial effects for those who are bereft, future research is needed to examine the impact of p-DT-SQ for those who are grieving.

"Mãos de Conforto" (Hands of Comfort): A novel non-pharmacological intervention to ease agitation in elderly persons with dementia.

Behavioral symptoms associated with dementia, such as agitation, are frequent and associated with well-known negative consequences for patients, their carers, and their environment. Pharmacological treatments for agitation using sedatives and antipsychotics are known to have several undesirable side effects and modest efficacy. Non-pharmacological alternatives are recommended as first-line options for agitation in persons with dementia with few side effects, but there is limited evidence of efficacy. We developed a novel and simple non-pharmacological alternative for agitation in dementia residents based on a Brazilian intervention using warm water surgical gloves used in patients with COVID-19 in intensive care units during the pandemic. We coined it "Mãos de Conforto" - Hands of Comfort. We report a series of 7 cases in 3 residents with dementia who whore Hands of Comfort.

Translation and cross-cultural adaptation of the Dignity Therapy Question Protocol to Brazilian Portuguese.

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

"Hello. May I speak with someone, please? It's not about my physical pain.": A retrospective study about the factors associated with phone calls to a Portuguese home-based palliative care team.

OBJECTIVE: Telephone availability is integrated into our home-based palliative care team (HPCT) with the aim of helping terminally ill patients and their caregivers alleviate their physical and psychosocial suffering, in addition to the team's home visits. We aimed to compare the differences between non-callers (patients with no phone calls during the team's follow-up period) vs. callers (≥1 phone call during the team's follow-up period) across sociodemographic, clinical, physical, and psychosocial variables. METHOD: Retrospective analysis of all patients with and without phone call entries registered in our anonymized database, from October 2018 to September 2020. RESULTS: We analyzed 389 patients: 58% were male, and the average age was 71 years old; 84% had malignancies, with a mean palliative performance status of 45%. The majority of patients (n = 281, 72%) made at least one phone call to HPCT. On average, a mean of 2.5 calls (SD = 3.61; range: 0-26) per patient was registered. Callers compared with non-callers more frequently lived with someone (p = 0.030), preferred home as a place to die (p = 0.039), had more doctor (p = 0.010) and nurse home visits (p = 0.006), a prolonged HPCT follow-up time (p = 0.053), along with more frequent emergency room visits (p < 0.001) and hospitalizations (p = 0.043). Moreover, those who made at least one phone call to the HPCT had a higher frequency of conspiracy of silence (p = 0.046), anxiety (p = 0.044), and lower palliative performance status (p = 0.001). No statistically significant associations or differences were found for the other variables. SIGNIFICANCE OF RESULTS: Several factors seem to correlate with an increased number of phone calls, and physical suffering does not play a relevant role in triggering contacts, in contrast with psychosocial and other clinical factors.

Facial edema as an adverse drug reaction to olanzapine in a patient with cancer receiving palliative care.

OBJECTIVE: Atypical neuroleptics such as olanzapine are indicated for the treatment of various psychiatric disorders and have been used in the palliative care setting also for several clinical indications. Peripheral and facial edema are a rare side effect of the treatment with olanzapine. We report a case of an advanced cancer patient cared receiving palliative care who developed severe facial edema after initiating a low dose of olanzapine in monotherapy. METHOD: A patient with advanced cancer who presented with severe facial edema after initiating olanzapine for the treatment of her opioid use disorder. RESULTS: After excluding other differential diagnosis for facial edema, olanzapine was discontinued with complete resolution of the edema. SIGNIFICANCE OF RESULTS: To the best of our knowledge, this is the first case reporting facial edema due to olanzapine treatment in a patient with advanced cancer. Our report will help clinicians recognize the possible role of olanzapine in cases of rapid onset of facial edema, allowing its rapid resolution.

A Portuguese trial using dignity therapy for adults who have a life-threatening disease: Qualitative analysis of generativity documents.

OBJECTIVES: Dignity therapy (DT) is a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories, essential disclosures, and prepare a final generativity document. DT addresses psychosocial and existential issues, enhancing a sense of meaning and purpose. Several studies have considered the legacy topics most frequently discussed by patients near the end of life. To date, no Portuguese study has done that analysis. METHOD: We conducted a qualitative analysis of 17 generativity documents derived from a randomized controlled trial (RCT). Inductive content analysis was used to identify emerging themes. RESULTS: From the 39 RCT participants receiving DT, 17 gave consent for their generativity document to undergo qualitative analysis. Nine patients were female; mean age of 65 years, with a range from 46 to 79 years. Seven themes emerged: "Significant people and things"; "Remarkable moments"; "Acknowledgments"; "Reflection on the course of life"; "Personal values"; "Messages left to others"; and "Requests and last wishes". SIGNIFICANCE OF RESULTS: Generativity document analysis provides useful information for patients nearing death, including their remarkable life moments and memories, core values, concerns, and wishes for their loved ones. Being conscious of these dominant themes may allow health providers to support humanized and personalized care to vulnerable patients and their families, enhancing how professionals perceive and respond to personhood within the clinical setting.

Beyond striae cutis: A case report on how physical skin complaints unveiled end-of-life total experience.

BACKGROUND: End-of-life is a unique and multidimensional experience, and physical complaints can reveal other areas of distress. METHOD: A case report of a woman with terminal cancer with painful and deforming skin striae cared by a multidisciplinary team. RESULTS: After initially treating her physical pain, other end-of-life psychosocial, spiritual, and existential aspects could be addressed. SIGNIFICANCE OF RESULTS: Physical distress can unveil other essential areas of end-of-life experience when multidisciplinary teams caring for the terminally ill patients use holistic approaches.

The desire for death in Portuguese home-care palliative patients: Retrospective analysis of the prevalence and associated factors.

OBJECTIVE: Desire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC) unit. METHOD: Retrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020. RESULTS: Of the 163 patients anonymously registered in our database, 122 met entry criteria; 52% were male, the average age was 69 years old; 85% had malignancies, with a mean performance status (PPS) of 56%. The prevalence of DfD was 20%. No statistical differences were observed between patients with and without DfD regarding sex, age, marital status, religion, social support, prior PC or psychological follow-up, type of diagnosis, presence of advanced directives/living will, time since diagnosis and PC team's follow-up time. Statistically significant associations were found between higher PPS scores and DfD (OR = 0.96; 95% confidence interval (CI) [0.93-0.99]); Edmonton Symptom Assessment Scale scores for drowsiness (OR = 4.05; 95% CI [1.42-11.57]), shortness of breath (OR = 3.35; 95% CI [1.09-10.31]), well-being (OR = 7.64; 95% CI [1.63-35.81]). DfD was associated with being depressed (OR = 19.24; 95% CI [3.09-+inf]); feeling anxious (OR = 11.11; 95% CI [2.51-49.29]); HADS anxiety subscale ≥11 (OR = 25.0; 95% CI [2.10-298.29]); will-to-live (OR = 39.53; 95% CI [4.85-321.96]). Patients feeling a burden were more likely to desire death (OR = 14.67; 95% CI [1.85-116.17]), as well as those who were not adapted to the disease (OR = 4.08; 95% CI [1.30-12.84]). In multivariate regression analyses predicting DfD, three independent factors emerged: higher PPS scores were associated with no DfD (aOR = 0.95; 95% CI [0.91-0.99]), while the sense of being a burden (aOR = 12.82; 95% CI [1.31-125.16]) and worse well-being (aOR = 7.72; 95% CI [1.26-47.38]) predicted DfD. SIGNIFICANCE OF RESULTS: Prevalence of DfD was 20% and consistent with previous Portuguese evidence on DfD in PC inpatients. Both physical and psychosocial factors contribute to a stronger DfD.

"Truly holistic?" Differences in documenting physical and psychosocial needs and hope in Portuguese palliative patients.

OBJECTIVE: Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation. METHOD: The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018-January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question "Are you depressed?" (SQD), (3) the question "Do you feel anxious?" (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL). RESULTS: Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%).Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively). SIGNIFICANCE OF RESULTS: There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.

Portuguese Patient Dignity Question: A cross-sectional study of palliative patients cared for in primary care.

INTRODUCTION: The Patient Dignity Question (PDQ) is a clinical tool developed with the aim of reinforcing the sense of personhood and dignity, enabling health care providers (HCPs) to see patients as people and not solely based on their illness. OBJECTIVE: To study the acceptability and feasibility of the Portuguese version of the PDQ (PDQ-PT) in a sample of palliative care patients cared for in primary care (PC). METHOD: A cross-sectional study using 20 palliative patients cared for in a PC unit. A post-PDQ satisfaction questionnaire was developed. RESULTS: Twenty participants were included, 75% were male; average age was 70 years old. Patients found the summary accurate, precise, and complete; all said that they would recommend the PDQ to others and want a copy of the summary placed on their family physician's medical chart. They felt the summary heightened their sense of dignity, considered it important that HCPs have access to the summary and indicated that this information could affect the way HCPs see and care for them. The PDQ-PT's took 7 min on average to answer, and 10 min to complete the summary. SIGNIFICANCE OF RESULTS: The PDQ-PT is well accepted and feasible to use with palliative patients in the context of PC and seems to be a promising tool to be implemented. Future trials are now warranted.

Adapting the Portuguese dignity question framework for adolescents: ages 10-18.

OBJECTIVE: Dignity therapy (DT) is well established in adult populations, and it is likely that it could benefit younger people. This study aimed to adapt the adult Portuguese DT question framework for adolescents (DT-QF-Adol) (ages 10-18). METHOD: Five stages were followed: (1) the Portuguese DT-QF for adults was adapted for adolescents with the original author's collaboration, (2) an expert committee provided feedback on the adapted version, (3) an initial consensus version of the DT-QF-Adol was created, (4) expert committee consult affirmed final consensus, and (5) validation stage with a sample of 17 adolescents followed in ambulatory psychology clinic. RESULTS: DT's original author endorsed the final Portuguese DT-QF-Adol, reinforcing that it captures the fundamental dimensions of DT. There was 100% agreement on the final consensus version and defined age group (10-18 years old). Twenty adolescents were invited to participate, and 17 were included after informed consent was obtained; 53% were female. The average age was 12.7 years. The interviewed adolescents reported that the DT-QF-Adol was clear, and they did not identify any ambiguity or difficulty in answering any of the questions. They assumed that this information could positively affect the way parents and friends see and cared for them, permitting others to understand their concerns and preferences. Participants felt that the DT-QF-Adol could be a good starting point for a conversation with their loved ones. Although they did not consider vital for health professionals to access their answers, they strongly felt that the DT-QF-Adol might be essential to sick adolescents and they would recommend it to others. SIGNIFICANCE OF RESULTS: We developed a DT-QF of nine questions for Portuguese adolescents (DT-QF-Adol), coined Protocolo de Perguntas da Terapia da Dignidade para Adolescentes - 10-18 anos. This tool can potentially be considered a good addition for pediatric palliative care.

A prospective intervention to improve happiness and reduce burnout in oncologists.

BACKGROUND: There is a paucity of data about effective interventions to improve happiness and reduce burnout in oncologists. Benjamin Franklin developed a 13-week program of "necessary activities" or "virtues" (temperance, silence, order, resolution, frugality, industry, sincerity, justice, moderation, cleanliness, tranquility, chastity, and humility) to follow, in his attempt at self-improvement. In this pilot study, we explored whether using a modified version of this was associated with any discernable impact on physician happiness, burnout, or compliance with each of the virtues. METHODS: Self-reported happiness (Oxford happiness scores) and burnout (Abbreviated Maslach Burnout Inventory) were completed at baseline (pre-study), week 13, and 1 month after completion of the program. Each day during the 13-week program, oncologists were emailed a list of virtues to focus on and scored how they felt they were complying with them. The oncologist's spouses also assessed how they felt the oncologist was complying with the virtues. RESULTS: Thirteen physicians completed the baseline scores, 11 completed Maslach/Oxford scores at the end of the study, and 8 the 1-month post-study assessment. No significant improvements in happiness and burnout (emotional exhaustion, depersonalization, personal accomplishment) scores were observed. Statistically significant changes in self-rated virtue scores were observed for temperance (p = 0.046), order (p = 0.049), and resolution (p = 0.014). Additionally, although not reaching statistical significance, 11 of 13 virtues (excepting sincerity and chastity) assessed by spouses indicated a positive change over time. CONCLUSION: In this hypothesis generating study, daily reflection on personal virtues was not associated with any statistically significant change in happiness or burnout scores. Alternative strategies should be considered.

Effect of dignity therapy on end-of-life psychological distress in terminally ill Portuguese patients: A randomized controlled trial.

OBJECTIVE: Dignity therapy (DT) is a brief form of psychotherapy developed for patients living with a life-limiting illness that has demonstrated efficacy in treating several dimensions of end-of-life psychological distress. Our aim was to determine the influence of DT on demoralization syndrome (DS), the desire for death (DfD), and a sense of dignity (SoD) in terminally ill inpatients experiencing a high level of distress in a palliative care unit. METHOD: A nonblinded phase II randomized controlled trial was conducted with 80 patients who were randomly assigned to one of two groups: the intervention group (DT + standard palliative care [SPC]) or the control group (SPC alone). The main outcomes were DS, DfD, and SoD, as measured according to DS criteria, the Desire for Death Rating Scale, and the Patient Dignity Inventory (PDI), respectively. All scales were assessed at baseline (day 1) and at day 4 of follow-up. This study is registered with http://www.controlled-trials.com/ISRCTN34354086. RESULTS: Of the 80 participants, 41 were randomized to DT and 39 to SPC. Baseline characteristics were similar between the two groups. DT was associated with a significant decrease in DS compared with SPC (DT DS prevalence = 12.1%; SPC DS prevalence = 60.0%; p < 0.001). Similarly, DT was associated with a significant decrease in DfD prevalence (DT DfD prevalence = 0%; SPC DfD prevalence = 14.3%; p = 0.054). Compared with participants allocated to the control group, those who received DT showed a statistically significant reduction in 19 of 25 PDI items. SIGNIFICANCE OF RESULTS: Dignity therapy had a beneficial effect on the psychological distress encountered by patients near the end of life. Our research suggests that DT is an important psychotherapeutic approach that should be included in clinical care programs, and it could help more patients to cope with their end-of-life experiences.

Prevalence and factors associated with demoralization syndrome in patients with advanced disease: Results from a cross-sectional Portuguese study.

BACKGROUND: Demoralization syndrome (DS) within the context of the psychological experience at the end of life is an important and relevant medical issue and remains the subject of a growing area of research. METHOD: Ours was a cross-sectional study designed to assess the prevalence and associated demographic, physical, psychiatric, and psychosocial factors for demoralization syndrome in Portuguese patients with advanced disease. RESULTS: Some 80 terminally ill patients were included in the analyses over a 28-month period of time. The prevalence of DS was found to be 52.5%. No statistical differences were observed among prevalence of DS within categories of all studied variables, with the exception of depression using DSM-IV criteria (prevalence ratio PR = 1.8, CI 95% = [1.18-2.74]) and desire for death (PR = 1.8, CI 95% = [1.25-2.56]). In the Poisson regression analyses predicting DS, none of the latter factors emerged as significant (DSM-IV criteria: PR = 1.6, CI 95% = [0.84-3.08]; and desire for death: PR = 1.5, CI 95% = [0.74-2.99]). Thirty percent of participants met both criteria for demoralization syndrome and depression using the DSM-IV. SIGNIFICANCE OF RESULTS: Prevalence of demoralization syndrome was high in this patient sample. Based on our results, we cannot determine if DS and depression are two distinct psychological entities. Identifying factors associated with DS could help provide efficacious interventions capable of diminishing suffering in terminally ill patients.