Effects of dignity therapy on psychological distress and wellbeing of palliative care patients and family caregivers - a randomized controlled study.

BACKGROUND: This study extended the original Dignity Therapy (DT) intervention by including partners and family caregivers (FCs) of terminally-ill cancer patients with the overall aim of evaluating whether DT can mitigate distress in both patients nearing the end of life and their FCs. METHODS: In this multicenter, randomized controlled trial (RCT), a total of 68 patients with life expectancy < 6 months and clinically-relevant stress levels (Hospital Anxiety Depression total score; HADStot ≥ 8) including their FCs were randomly assigned to DT, DT + (including their FCs), or standard palliative care (SPC) in a 1:1:1 ratio. Study participants were asked to complete a set of questionnaires pre- and post-intervention. RESULTS: The coalesced group (DT and DT +) revealed a significant increase in patients' perceived quality of life (FACIT-Pal-14) following the intervention (mean difference 6.15, SD = 1.86, p < 0.01). We found a statistically significant group-by-time interaction effect: while the HADStot of patients in the intervention group remained stable over the pre-post period, the control group's HADStot increased (F = 4.33, df = 1, 82.9; p < 0.05), indicating a protective effect of DT. Most patients and their FCs found DT useful and would recommend it to other individuals in their situation. CONCLUSIONS: The DT intervention has been well-received and shows the potential to increase HRQoL and prevent further mental health deterioration, illness burden and suffering in terminally-ill patients. The DT intervention holds the potential to serve as a valuable tool for facilitating end-of-life conversations among terminally-ill patients and their FCs. However, the implementation of DT within the framework of a RCT in a palliative care setting poses significant challenges. We suggest a slightly modified and less resource-intensive version of DT that is to provide the DT inventory to FCs of terminally-ill patients, empowering them to ask the questions that matter most to them over their loved one's final days. TRIAL REGISTRATION: This study was registered with Clinical Trial Registry (ClinicalTrials.gov -Protocol Record NCT02646527; date of registration: 04/01/2016). The CONSORT 2010 guidelines were used for properly reporting how the randomized trial was conducted.

A bioethical perspective on the meanings behind a wish to hasten death: a meta-ethnographic review.

BACKGROUND: The expressions of a "wish to hasten death" or "wish to die" raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the "wish to hasten death/die" based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and how the meanings behind the "wish to hasten death/die" relate to and are interpreted in light of ethical principles in palliative care. METHODS: We conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare's framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330. RESULTS: Out of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the "wish to hasten death" and/or "wish to die" were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the "wish to hasten death". Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles. CONCLUSIONS: This meta-ethnographic review shows a reduced number of qualitative studies on the "wish to hasten death" and/or "wish to die" explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed.

Exploring Audio Recording in Terminally Ill Patients Receiving Hospice Care: "Stories for Life Charity" Model.

Stories for Life is a UK charity that provides a free and confidential service for terminally ill patients to audio record their "life story." Patients are given a copy of the recording and, if they wish, can then pass a copy on to their family/friends. This study explored how a group of terminally ill patients, receiving hospice care, experienced the process of making a voice recording of their biographies. Interviews were conducted with 5 terminally ill patients and 1 family member. Study participants found that talking to a trained volunteer provided a neutral, nonjudgmental interviewer. Patients reported a feeling of catharsis while telling their story as well as being able to reflect on significant life events. However, it was challenging to convey difficult emotions while also being mindful of protecting family who may listen to the recording. Although there was some uncertainty about how the recording would be perceived by listeners, leaving a voice-recorded life account was felt to be beneficial for immediate family members, as well as maintaining a meaningful connection with future generations. Overall, recording an audio biography in terminal illness can allow patients a space for reflection and a meaningful connection with their families.

Paediatric palliative care for the generalist.

Palliative care has been defined as 'the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life'. Unfortunately, palliative care and especially paediatric palliative care remain a neglected area of medicine and are widely misunderstood, with few healthcare providers having any formal training in South Africa. To relieve health-related suffering, healthcare providers must understand that the field is not limited to end-of-life care for the terminally ill, and holistic care (physical, emotional, social and spiritual) should commence at the time of diagnosis of a serious illness. It is imperative that all healthcare providers develop the knowledge and skills to provide this essential care across all levels of care and disciplines. The article aims to raise awareness and show how to practically implement palliative care through case studies.

Associations of prognostic-awareness-transition patterns with emotional distress and quality of life during terminally ill cancer patients' last 6 months of life.

OBJECTIVE: Unprecedently investigate associations of prognostic-awareness-transition patterns with (changes in) depressive symptoms, anxiety symptoms, and quality of life (QOL) during cancer patients' last 6 months. METHODS: In this secondary analysis study, 334 cancer patients in their last 6 months transitioned between four prognostic-awareness states (unknown and not wanting to know, unknown but wanting to know, inaccurate awareness, and accurate awareness), thus constituting three transition patterns: maintaining-accurate-, gaining-accurate-, and maintaining-inaccurate/unknown prognostic awareness. A multivariate hierarchical linear model evaluated associations of the transition patterns with depressive symptoms, anxiety symptoms, and QOL determined at final assessment and by mean difference between the first and last assessment. RESULTS: At the last assessment before death, the gaining-accurate-prognostic-awareness group reported higher levels of depressive symptoms (estimate [95% confidence interval] = 1.59 [0.35-2.84]) and the maintaining- and gaining-accurate-prognostic-awareness groups suffered more anxiety symptoms (1.50 [0.44-2.56]; 1.42 [0.13-2.71], respectively) and poorer QOL (-7.07 [-12.61 to 1.54]; -11.06 [-17.76 to -4.35], respectively) than the maintaining-inaccurate/unknown-prognostic-awareness group. Between the first and last assessment, the maintaining- and gaining-accurate-prognostic-awareness groups' depressive symptoms (1.59 [0.33-2.85]; 3.30 [1.78-4.82], respectively) and QOL (-5.04 [-9.89 to -0.19]; -8.86 [-14.74 to -2.98], respectively) worsened more than the maintaining-inaccurate/unknown-prognostic-awareness group, and the gaining-accurate-prognostic-awareness group's depressive symptoms increased more than the maintaining-accurate-prognostic-awareness group (1.71 [0.42-3.00]). CONCLUSIONS: Unexpectedly, patients who maintained/gained accurate prognostic awareness suffered more depression, anxiety, and poorer QOL at end of life. Promoting accurate prognostic awareness earlier in the terminal-cancer trajectory should be supplemented with adequate psychological care to alleviate patients' emotional distress and enhance QOL. TRIAL REGISTRATION: ClinicalTrials.gov:NCT01912846.

En busca del buen morir / In search of a good death

La muerte siempre ha generado desconcierto, por lo que acompañar en este proceso de final de vida conlleva un alto compromiso existencial. Si a esta difícil tarea se le agregan los condicionantes hospitalarios o legales que sufren los enfermos en su agonía, estamos ante una muerte aterradora, muy distante de una partida que pueda ser considerada amorosa. Como sabemos, la palabra "clínica" hace referencia a la práctica de atender al pie de la cama del paciente, aliviando el dolor del que está por partir; sin embargo, el "corsé legal" de la muerte está alejando al médico de aquel que debiera recibir toda su atención y sus cuidados, atándole el brazo para acompañarlo en el buen morir. Deberíamos debatir y acordar una estrategia que enriquezca la experiencia del momento final de la vida, de modo que ese conjunto acotado de pacientes pueda elegir su forma de partir. Es de un valor incalculable despertar la compasión en este tema tan importante que preocupa al ser humano desde los inicios de la civilización. Sería muy fructífero que aprovechemos la transmisión de sabiduría de siglos de antiguas culturas que han sabido cuidar con humildad la vida hasta el instante de morir. (AU)

Death has always implied confusion, so accompanying this end-of-life process entails a highexistential commitment. If we add to this difficult task the hospital or legal constraints suffered bypatients in their agony, we are facing a terrifying death, very far from a departure that can be considered a loving one. As we know, the word "clinical" refers to the practice of caring for the patient very close to the bed, alleviating the pain of whom is about to leave; however, the "legal corset" of death is separating the doctor from the one who should receive all his attention and care, preventing him from accompanying the pacient in his/her good dying. We should discuss and agree on a strategy that enriches the experience of the end of life, so that patients could choose the way to leave. It is of incalculable value to awaken compassion on this important issue that has concerned human since the beggining of civilization. It would be very fruitful if we take advantage of the enormous wisdom of ancient cultures that have humbly cared for life until the moment of death. (AU)

Why People Think They Might Hasten Their Death When Faced With Irremediable Health Conditions Compared to Why They Actually Do so.

This study surveys the differences of relatively healthy proponents of end-of-life choices and people with irremediable health conditions having already made the decision to hasten their deaths on what each group considers important in influencing a desire to hasten death. Psychosocial factors were more important than physical ones for both groups; but those contemplating what might influence them to hasten their deaths in the future thought pain and feeling ill would be much bigger factors than they turned out to be for those deciding to do so. Those having decided to hasten their deaths cited the lack of any further viable medical treatments and having to live in a nursing home as bigger factors. Identifying these psychosocial factors influencing a desire for a hastened death suggests that caregivers and medical providers may want to review what compassionate understanding and support looks like for people wanting to hasten their death.

Dignity therapy, psycho-spiritual well-being and quality of life in the terminally ill: systematic review and meta-analysis.

OBJECTIVES: Dignity therapy (DT) is a brief, individualised psychotherapy that aims to alleviate psychosocial and spiritual distress in the final stages of life. It is unknown yet whether DT can enhance sense of dignity and improve psychological and spiritual well-being as well as quality of life of terminally ill patients. METHODS: We searched PubMed, EMBASE, CINAHL plus, ProQuest Health & Medical Complete, PsycINFO and the Cochrane Library, as well as Chinese databases including Weipu Data, Wanfang Data and China National Knowledge Infrastructure from inception to 30 April 2021, for randomised controlled trials (RCTs) assessing the effects of DT on dignity, psycho-spiritual well-being and quality of life of terminally ill patients receiving palliative care. RESULTS: We identified 507 unique records, and included 9 RCTs (871 participants). Comparator was standard palliative care. DT did not improve terminally ill patients' sense of dignity (p=0.90), hope (p=0.15), spiritual well-being (p=0.99) and quality of life (p=0.23). However, DT reduced anxiety and depression after intervention (standardised mean difference, SMD=-1.13, 95% CI (-2.21 to -0.04), p=0.04; SMD=-1.22, 95% CI (-2.25 to -0.18), p=0.02, respectively) and at 4 weeks post-intervention (SMD=-0.89, 95% CI (-1.71 to -0.07), p=0.03; SMD=-1.26, 95% CI (-2.38 to -0.14), p=0.03, respectively). CONCLUSION: DT can be offered as a psychological intervention for terminally ill patients to reduce their anxiety and depression. More studies are needed to further evaluate the effects of DT on terminally ill patients' dignity, spiritual well-being and quality of life.

Prognostic awareness and its association with health outcomes in the last year of life.

BACKGROUND: Little research has examined changes in prognostic awareness (PA) in the last year of life and the extent PA change was associated with anxiety, depression, and spiritual well-being among metastatic cancer patients. METHODS: Two surveys were administered in the last year of life to 176 conveniently sampled Singaporean patients with stage 4 solid cancers. PA was assessed by asking patients whether they were aware that their treatments were unlikely to cure their cancer. Multivariable linear regression models were used to investigate the association of PA change with anxiety, depression, and spiritual well-being. RESULTS: The proportion of patients with accurate PA increased (39.2%-45.5%; p < 0.05) from the second-last assessment to the last assessment before death. Those with inaccurate PA decreased (26.1%-20.4%; p < 0.05) while a third of patients remained uncertain at both assessments (34.7% and 34.1%). Compared to patients with inaccurate PA at both assessments, patients who reported accurate PA at both assessments reported worsened anxiety (ß = 2.08), depression (ß = 3.87), and spiritual well-being (ß = -4.45) while patients who reported being uncertain about their prognosis at both assessments reported worsened spiritual well-being (ß = - 6.30) at the last assessment before death (p < 0.05 for all). CONCLUSIONS: Interventions should dually focus on decreasing prognostic uncertainty at the end-of-life while minimising the psychological and spiritual sequelae associated with being prognostically aware. More research is needed to clarify the causes of prognostic uncertainty.

Occupational performance and prioritized problematic everyday occupations among people with advanced cancer living alone versus living with someone.

BACKGROUND: People living at home with advanced cancer wish to maintain and preserve domestic life, but they experience several barriers in their everyday occupations and thereby occupational performance. There is little knowledge of these barriers experienced by people living alone versus people living with someone. OBJECTIVE/AIM: To investigate differences in self-perceived occupational performance and the prioritisation of getting self-reported problematic everyday occupations solved among people with advanced cancer, taking living status into consideration. METHOD: A cross-sectional study using baseline data from an RCT including 174 participants with advanced cancer living at home. Difficulty and priorisation of everyday occupations were assessed using the Individually Prioritised Problem Assessment (IPPA). RESULTS: In total, 731 problematic everyday occupations were reported, mainly related to the categories of housework, self-care and leisure. CONCLUSIONS/SIGNIFICANCE: Overall, no statistically significant difference in self-reported occupational performance was found. However, people living alone perceived statistically significantly more frequently showering/bathing and doing laundry as difficult and therefore important to address. In contrast, people living with someone prioritised social interaction and home maintenance statistically significantly more frequently.

Missed Opportunities to Ease Suffering: An Explanatory Model of Occupational Therapy Utilization in End-of-Life Care.

Background: With disease progression, a terminally ill person may experience loss of physical and cognitive skills required to perform everyday activities. Such functional loss can erode autonomy and cause existential suffering. Supported engagement in everyday activities may help terminally ill people stay involved in living and cope with dying. Occupational therapy enables people to engage in valued activities at the end of life, yet remains under-utilized. Objectives: To address the perceived under-utilization of end-of-life care occupational therapy, the authors investigated how utilization of occupational therapy in end-of-life care is determined from the perspective of decision-makers and occupational therapists and then developed a model of the process. Methods: Using a grounded theory method, authors conducted two semi-structured interviews with 20 decision-makers and 21 occupational therapists. Theoretical sampling followed by paradigm analysis, yielded a data-grounded model. Results: The authors developed The Model of Occupational Therapy Utilization in End-of-Life Care. Service utilization was primarily contingent upon the decision-makers' awareness of occupational therapy's role in end-of-life care and further influenced by place of care cost constraints and participants' ability to adjust focus of the occupational therapy to accommodate the patient's dying process. Conclusion: Limited awareness of occupational therapy's role in end-of-life care warrants research on whether modification of model constructs may increase awareness and utilization. Education is indicated to teach providers about suffering due to functional loss and how to adjust focus of occupational therapy to sustain occupational participation through decline, across different care settings, and along a range between rehabilitation-focused to participation-focused outcomes.

The connections of physical and psychosocial symptoms among patients with terminal illnesses: A network analysis.

BACKGROUND: Patients with terminal illnesses have different symptoms. The goal of palliative care is to alleviate the suffering induced by these symptoms. Available research on symptoms has focused on their prevalence or identification of clusters. Little is known about the central symptoms contributing to the maintenance of the whole system of symptoms or the mechanism of influence between symptoms, particularly between physical and psychosocial symptoms. AIM: The study used network analysis to explore symptom clusters among patients with terminal illnesses and identify the central symptoms, the bridge symptoms, and pathways between physical and psychosocial symptoms. DESIGN AND SETTING/PARTICIPANTS: This is a retrospective cohort study using baseline symptom assessment of 677 adults with terminal illnesses receiving care from the Integrated Community End-of-Life Care Support Teams. RESULTS: Three symptom clusters were identified: physical, psychological, and practical clusters. "Weakness or lack of energy" was identified as the crucial symptom affecting the changes of other symptoms, followed by depression and anxiety. Three connections between the psychological and physical symptoms were identified: anxiety-pain, depression-constipation, and perceived family anxiety-poor appetite pathways. Pathways of practical concern-peace and practical concern-depression were indicated between practical and psychological symptoms. CONCLUSIONS: This study is the first of its kind to investigate the connections and mechanism of influence between symptoms among patients with terminal illnesses. It offers clear pathways for intervention with the most influential symptoms of weakness, anxiety, and depression.

More care, less pathway. . .More plans?

Treatment Escalation Plans (TEPs) risk becoming the next 'tick box exercise', if not supported by open and compassionate conversations by healthcare teams brave enough to adequately address the culturally taboo subject of death. This requires a wider system of ongoing support, education and clinical leadership to create a culture of open communication. While excellent to read the emphasis that palliative treatments should not be reserved for the terminally ill, further advancements would see 'Supportive Care' move from the lowest levels of escalation to becoming embedded as standard practice for all deteriorating patients. This supportive element of care, underpinned by clear communication, could accompany patients regardless of their level of escalation. Through adopting the Palliative and Supportive Care ethos, addressing not only physical symptom needs, but also exploring social, psychological and spiritual concerns, be it in the ICU or on a general ward, we may move closer towards offering the truly individualised plans of care that TEPs promise.

Considerações éticas relacionadas às condutas terapêuticas de pacientes terminais / Ethical considerations related to the therapeutic management of terminally ill patients / Consideraciones éticas relacionadas con la conducta terapéutica de los pacientes terminales

Objetivo: Conhecer as considerações éticas relacionadas às condutas terapêuticas das equipes de saúde frente aos pacientes terminais. Metodologia: Trata-se de um estudo exploratório de natureza qualitativa. Realizado no período de dezembro de 2020, através do acesso ao Banco de Teses e Dissertações da CAPES, considerando que este, coordena o Sistema de Pós-graduação brasileiro. Resultados: Foram identificadas seis classes semânticas, de modo que a mesma formulou a seguinte distribuição de contextos temáticos: Classe 1 Paciente terminal; Classe 2 Condutas médicas; Classe 3 Manejo terapêutico; Classe 4 Protocolos clínicos e aspectos metodológicos dos estudos; Classe 5 Dependências metodológicas e Classe 6 Suporte clínico na terminalidade Dependências metodológicas. Discussão: A morte e a vida tornam-se um impasse enfrentado pelos profissionais de saúde, pois existem fatores decisivos na vida de cada paciente em situação terminal com nenhuma esperança de cura, envolvendo assim questões éticas. Conclusão: Portanto, torna-se necessário que as instâncias de saúde assegurem protocolos, treinamentos e aporte psicológicos para esses profissionais que atuam diretamente com pacientes em situações terminais de vida, para que possa haver uma ressignificação do processo de cuidado com pacientes e segurança na tomada de decisões por parte dos profissionais de saúde, e assim possa preservar a ética.

Objective: To know the ethical considerations related to the therapeutic behavior of health teams towards terminal patients. Methodology: This is an exploratory study of a qualitative nature. Carried out in January 2020, through access to the CAPES Theses and Dissertations Bank, considering that it coordinates the Brazilian Postgraduate System. Results: Six semantic classes were identified, so that it formulated the following distribution of thematic contexts: Class 1 Terminal patient; Class 2 Medical conducts; Class 3 Therapeutic management; Class 4 Clinical protocols and methodological aspects of the studies; Class 5 Methodological dependencies and Class 6 Clinical support in terminality Methodological dependencies. Discusson: Death and life become an impasse faced by health professionals, as decisive there are factors in the life of each patient in a terminal situation with no hope of cure, thus involving ethical issues. Conclusion: Therefore, it is necessary that health institutions ensure protocols, training and psychological support for these professionals who work directly with patients in terminal situations, so that there can be a new meaning for the process of patient care and safety in decision-making by health professionals, and thus can preserve ethics.

Objetivo: Conocer las consideraciones éticas relacionadas con las conductas terapéuticas de los equipos de salud frente a los pacientes terminales. Metodología: Se trata de un estudio exploratorio de carácter cualitativo. Realizado en el período de diciembre de 2020, a través del acceso al Banco de Tesis y Disertaciones de la CAPES, considerando que este, coordina el Sistema de Pós-graduación brasileño. Resultados: Se identificaron seis clases semánticas, por lo que se formuló la siguiente distribución de contextos temáticos: Clase 1 Paciente terminal; Clase 2 Conductas médicas; Clase 3 Manejo terapéutico; Clase 4 Protocolos clínicos y aspectos metodológicos de los estudios; Clase 5 Dependencias metodológicas y Clase 6 Apoyo clínico en la terminalidad Dependencias metodológicas. Discusión: La muerte y la vida se convierten en un impasse al que se enfrentan los profesionales de la salud, porque hay factores decisivos en la vida de cada paciente en situación terminal sin esperanza de curación, lo que implica cuestiones éticas. Conclusión: Por lo tanto, se hace necesario que las instancias de salud garanticen protocolos, capacitación y apoyo psicológico para estos profesionales que trabajan directamente con los pacientes en situaciones de vida terminal, para que pueda haber una resignificación del proceso de atención al paciente y seguridad en la toma de decisiones por parte de los profesionales de la salud, y así poder preservar la ética.

Perfil clínico-epidemiológico dos pacientes em cuidados paliativos atendidos em um serviço de urgência geral / The clinical-epidemiological profile of patients in palliative care treated in an general emergency service

Os pacientes em cuidados paliativos procuram o pronto-socorro para alívio imediato da dor ou de outros sintomas físicos. Os profissionais que atuam em serviços de urgência são treinados para prestar cuidados focados no tratamento direcionado a doenças agudas, mas podem fornecer intervenções paliativas para gerenciar as exacerbações de doenças crônicas ou os cuidados próximos ao fim da vida. Conhecer o perfil dos pacientes em cuidados paliativos atendidos em serviço de urgência e emergência é imprescindível para implementação de medidas que melhorem a qualidade do atendimento deste grupo de pacientes e otimizem o serviço prestado. O objetivo do estudo é descrever o perfil clínico-epidemiológico dos pacientes em cuidados paliativos atendidos no pronto-socorro. Foi realizado um estudo transversal, observacional e retrospectivo, de pacientes adultos de ambos os sexos, em cuidados paliativos atendidos em uma unidade de pronto atendimento ­ UPA, num período de dez meses. O estudo teve aprovação do Comitê de Ética e Pesquisa. Foram analisados 83 pacientes com média de idade de 78,5 (±14,3) anos. Houve predominância do sexo feminino (61,4%). A maioria era procedente do domicílio (87,9%). Havia a presença de cuidador em 91.57% dos casos, predominando o cuidador familiar não-remunerado (76,3%). Sobre atendimento prévio, 44,58% haviam procurado o pronto-socorro no último mês. Quanto à doença de base, 31,3% era oncológica e 68,6% não-oncológica. O câncer de próstata representou a principal causa oncológica (30,7%), seguido de neoplasia hepática e das vias biliares (15,4%). Nos casos não-oncológicos, foi mais frequente a síndrome de fragilidade (42,10%) e sequela grave de acidente vascular cerebral (17,5%). O principal sintoma foi a dispneia em 38 pacientes (45,7%). A dor e a dispneia foram mais frequentes nos casos oncológicos (34,6% e 23,0%, respectivamente), seguidos de dispneia e delirium nos casos não-oncológicos (56,1% e 28,0%, respectivamente). No presente estudo, predominou a faixa etária idosa em cuidados paliativos com cuidador presente com maior frequência de doença de base não-oncológica, dispneia, dor e delirium (AU)

Patients seek emergency rooms for immediate relief from pain or other physical symptoms. Professionals in emergency rooms are trained to render focused care in the targeted treatment of acute diseases and provide palliative interventions to manage exacerbations of chronic illnesses or end-of-life care to patients under palliative care. Knowing the patient's profile for palliative care in the emergency room can be helpful for implementing targeted measures to provide better patient care. This study aims to describe the clinical-epidemiological profile on patients in palliative care treated in an emergency room. A transversal, observational, and retrospective study was carried out of adult patients of both sexes in palliative care treated at Unidade de Pronto Atendimento -UPA over ten months. Data were collected about admission, type of caregiver, pathology, and outcomes. The study was approved by the Research and Ethics Committee. In total, 83 patients with a mean age of 78.5 (±14.3) were analyzed. There was a predominance of female patients (61.4%), and most came from a residence (87.9%). Further, 91.57% had caregivers, predominantly unpaid family caregivers (76.3%). Regarding previous care, 44.58% had sought palliative care less than one month ago. As the base disease, 68.6% were oncological and 31.3% non-oncological. Prostate cancer constituted the primary oncological cause (30.7%), followed by hepatic neoplasia and bile ducts (15.4%). Fragility syndrome (42.10%) and severe complications after a stroke (17.5%) were more frequent in non-oncological base cases. The main symptom was dyspnea noted in 38 patients (45.7%). Pain and dyspnea were more frequent in oncological cases (34.6% and 23.0%, respectively), followed by dyspnea and delirium in non-oncological cases (56.1% and 28.0%, respectively). In the present study, predominantly older patients with a caregiver demonstrated a more significant frequency of non-oncological base disease, dyspnea, pain, and delirium (AU)

Machine learning models to detect social distress, spiritual pain, and severe physical psychological symptoms in terminally ill patients with cancer from unstructured text data in electronic medical records.

BACKGROUND: Few studies have developed automatic systems for identifying social distress, spiritual pain, and severe physical and phycological symptoms from text data in electronic medical records. AIM: To develop models to detect social distress, spiritual pain, and severe physical and psychological symptoms in terminally ill patients with cancer from unstructured text data contained in electronic medical records. DESIGN: A retrospective study of 1,554,736 narrative clinical records was analyzed 1 month before patients died. Supervised machine learning models were trained to detect comprehensive symptoms, and the performance of the models was tested using the area under the receiver operating characteristic curve (AUROC) and precision recall curve (AUPRC). SETTING/PARTICIPANTS: A total of 808 patients was included in the study using records obtained from a university hospital in Japan between January 1, 2018 and December 31, 2019. As training data, we used medical records labeled for detecting social distress (n = 10,000) and spiritual pain (n = 10,000), and records that could be combined with the Support Team Assessment Schedule (based on date) for detecting severe physical/psychological symptoms (n = 5409). RESULTS: Machine learning models for detecting social distress had AUROC and AUPRC values of 0.98 and 0.61, respectively; values for spiritual pain, were 0.90 and 0.58, respectively. The machine learning models accurately identified severe symptoms (pain, dyspnea, nausea, insomnia, and anxiety) with a high level of discrimination (AUROC > 0.8). CONCLUSION: The machine learning models could detect social distress, spiritual pain, and severe symptoms in terminally ill patients with cancer from text data contained in electronic medical records.

Sufficient Death Preparedness Correlates to Better Mental Health, Quality of Life, and EOL Care.

CONTEXT: Patients can prepare for end of life and their forthcoming death to enhance the quality of dying. OBJECTIVES: We aimed to longitudinally evaluate the never-before-examined associations of cancer patients' death-preparedness states by conjoint cognitive prognostic awareness and emotional preparedness for death with psychological distress, quality of life (QOL), and end-of-life care received. METHODS: In this cohort study, we simultaneously evaluated associations of four previously identified death-preparedness states (no-death-preparedness, cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) with anxiety symptoms, depressive symptoms, and QOL over 383 cancer patients' last six months and end-of-life care received in the last month using multivariate hierarchical linear modeling and logistic regression modeling, respectively. Minimal clinically important differences (MCIDs) have been established for anxiety- (1.3-1.8) and depressive- (1.5-1.7) symptom subscales (0-21 Likert scales). RESULTS: Patients in the no-death-preparedness and cognitive-death-preparedness-only states reported increases in anxiety symptoms and depressive symptoms that exceed the MCIDs, and a decline in QOL from those in the sufficient-death-preparedness state. Patients in the emotional-death-preparedness-only state were more (OR [95% CI]=2.38 [1.14, 4.97]) and less (OR [95% CI]=0.38 [0.15, 0.94]) likely to receive chemotherapy/immunotherapy and hospice care, respectively, than those in the sufficient-death-preparedness state. Death-preparedness states were not associated with life-sustaining treatments received in the last month. CONCLUSION: Conjoint cognitive and emotional preparedness for death is associated with cancer patients' lower psychological distress, better QOL, reduced anti-cancer therapy, and increased hospice-care utilization. Facilitating accurate prognostic awareness and emotional preparedness for death is justified when consistent with patient circumstances and preferences.

The Patient Dignity Inventory and Dignity-Related Distress among the Critically Ill.

CONTEXT: Critical illness confers a significant risk of psychological distress, both during and after intensive care unit (ICU) admission. The Patient Dignity Inventory is a 25-item instrument initially designed to measure psychosocial, existential and symptom-related distress in terminally ill patients. OBJECTIVES: This study was conducted to validate the inventory as a means of identifying distress in inpatient critical care settings. METHODS: Single-center prospective cohort study of adult patients admitted to one of five ICUs within the University of Pennsylvania Health System for greater than 48 hours from January 2019 to February 2020. Patients completed the inventory in addition to the Patient Health Questionnaire-9 and the Generalized Anxiety Disorder-seven questionnaires. RESULTS: The tool's internal structure was assessed via principal components analysis. 155 participants consented, completed the surveys and were included for analysis. Scores on the inventory showed evidence of internal consistency when used in critical care settings (Cronbach's α=0.95). Moreover, principal components analysis elucidated four themes prevalent in critically-ill patients: Illness-related Concerns, Interactions with Others, Peace of Mind and Dependency. Construct validity was assessed through correlational analysis with depression and anxiety questionnaires. Scores on the inventory appear to be valid for assessing dignity-related psychological concerns in the critical care setting although there is overlap among components and with anxiety and depression scores. CONCLUSIONS: This study demonstrates that the inventory can be used to assess patient distress in critical care settings. Further research may elucidate the role of dignity-based interventions in treating and preventing post-intensive care psychological symptoms.

'Mums are sacred, and mums don't die': A mixed-methods study of adult child-parent dyadic relationships at the end of life.

OBJECTIVES: The aim of the present study was to report the specific challenges pertaining to the experiences and needs of (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children, regarding their relationship and relationship roles. The study sought to identify similar and differing relationship patterns between the two dyadic types. DESIGN: This prospective observational study used an exploratory mixed-methods approach. PARTICIPANTS: Patients and caregivers were recruited (Feb. 2018 - Nov. 2019) via general and specialist palliative care providers in Germany. METHODS: The study combined semi-structured interviews with quantitative questionnaires covering socio-demographic details, attachment style and emotional intimacy. FINDINGS: A total of 65 patients and 42 family caregivers participated in the study. Interview data indicate that illness situation and dependencies were perceived in both dyads to represent a relationship role reversal contrary to the 'natural order'. With respect to dyad 1, adult children stressed their need for autonomy, whereas caregiving parents strived for greater intimacy in the relationship. Within dyad 2, terminally ill parents and adult children experienced a new relationship intensity. Questionnaire data showed that emotional intimacy was perceived by patients in both dyads and adult child caregivers as significantly higher in the current illness situation compared to the pre-illness situation. CONCLUSIONS: This was the first study to contribute to an understanding of the different needs of terminally ill adult children/parents and their parent/adult child caregivers, thus contributing to an understanding of the different needs of these parties, both within and between the dyadic forms. The results suggest that the dyads share similar themes, which should be integrated into general support interventions; however, some themes appear more relevant for one dyad, only. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: For both dyads, we recommend psychological counseling to support open communication and understanding between parties.