RESUMO
BACKGROUND: The need to integrate palliative/end-of-life care across healthcare systems is critical considering the increasing prevalence of health-related suffering. In burn care, however, a general lack of practice recommendations persists. Our burn unit developed practice recommendations to be implemented and this study aimed to examine the components of the practice recommendations that were utilised and aspects that were not to guide further training and collaborative efforts. METHODS: We employed a prospective clinical observation approach and chart review to ascertain the utilisation of the recommendations over a 3-year period for all burn patients. We formulated a set of trigger parametres based on existing literature and burn care staff consultation in our unit. Additionally, a checklist based on the practice recommendations was created to record the observations and chart review findings. All records were entered into a secure form on Google Forms following which we employed descriptive statistics in the form of counts and percentages to analyse the data. RESULTS: Of the 170 burn patients admitted, 66 (39%) persons died. Although several aspects of each practice recommendation were observed, post-bereavement support and collaboration across teams are still limited. Additionally, though the practice recommendations were comprehensive to support holistic care, a preponderance of delivering physical care was noted. The components of the practice recommendations that were not utilised include undertaking comprehensive assessment to identify and resolve patient needs (such as spiritual and psychosocial needs), supporting family members across the injury trajectory, involvement of a palliative care team member, and post-bereavement support for family members, and burn care staff. The components that were not utilised could have undoubtedly helped to achieve a comprehensive approach to care with greater family and palliative care input. CONCLUSION: We find a great need to equip burn care staff with general palliative care skills. Also, ongoing collaboration/ partnership between the burn care and palliative care teams need to be strengthened. Active family engagement, identifying, and resolving other patient needs beyond the physical aspect also needs further attention to ensure a comprehensive approach to end of life care in the burn unit.
Assuntos
Unidades de Queimados , Queimaduras , Unidades de Terapia Intensiva , Cuidados Paliativos , Assistência Terminal , Humanos , Queimaduras/terapia , Cuidados Paliativos/normas , Assistência Terminal/normas , Masculino , Gana , Feminino , Pessoa de Meia-Idade , Adulto , Unidades de Terapia Intensiva/normas , Unidades de Terapia Intensiva/organização & administração , Estudos Prospectivos , Unidades de Queimados/organização & administração , Idoso , Adulto Jovem , Adolescente , Guias de Prática Clínica como Assunto , Saúde Holística , Centros de Atenção Terciária , Lista de ChecagemRESUMO
Palliative care (PC) plays a critical role in managing the difficulties associated with genitourinary malignancies. Its primary aim is to improve the overall health of patients, provide support to both patients and their caregivers, and help individuals to navigate the complex decisions about treatment and end-of-life care. PC takes a holistic approach to patient care, recognizing that genitourinary malignancies affect multiple aspects of a person's life. By addressing physical, emotional, social, and spiritual needs, PC aims to provide comprehensive support that is consistent with the patient's values and preferences. The goal is to optimize comfort, minimize distress, and enhance the patient's quality of life throughout the course of the illness. PC is not a one-off intervention, but an ongoing source of support. This article aims to provide a thorough overview of the critical elements involved in addressing the challenges posed by genitourinary cancers, emphasizing the importance of palliative interventions. We will highlight the multifaceted aspects of care and explore strategies to optimize the overall well-being of patients throughout the course of treatment for genitourinary malignancies.
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Cuidados Paliativos , Qualidade de Vida , Neoplasias Urogenitais , Humanos , Gerenciamento Clínico , Cuidados Paliativos/métodos , Assistência Terminal , Neoplasias Urogenitais/terapiaRESUMO
Harmful use of illicit drugs and/or alcohol is linked to life-limiting illness and complex health and social care needs, but people who use substances and have complex needs do not receive timely palliative care and fail to achieve quality standards for a good death. They and their families often require support from multiple health and social care services which are shown to be poorly integrated and fail to deliver interdisciplinary care. This study aimed to identify the existing barriers and facilitators within and between services in providing this population with a good death. Using a mixed methods approach of survey, focus groups and semi-structured interviews, we explored the perspectives of practitioner and management staff across a range of health and social disciplines and organisations in one combined authority in a large city in the north west of England. Our findings indicate that practitioners want to provide better care for this client group, but face structural, organisational and professional boundary barriers to delivering integrated and shared care. Differences in philosophy of care, piecemeal commissioning and funding of services, and regulatory frameworks for different services, lead to poor and inequitable access to health and social care services. Ways forward for improving care are suggested as bespoke hostel-based accommodation for palliative care for this client group, and specialist link workers who can transcend professional and organisational boundaries to support co-ordination of services and support. We conclude that it is no longer adequate to call for more training, better communication and improved joint working. Complex care at the end of life requires creative and cohesive systemic responses that enable multi-disciplinary practitioners to provide the care they wish to give and enables individuals using substances to get the respect and quality service they deserve.
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Prestação Integrada de Cuidados de Saúde , Cuidados Paliativos na Terminalidade da Vida , Transtornos Relacionados ao Uso de Substâncias , Assistência Terminal , Humanos , Estudos de Coortes , Transtornos Relacionados ao Uso de Substâncias/terapiaRESUMO
CONTEXT: Despite making do-not-resuscitate or comfort care decisions during advance care planning, terminally ill patients sometimes receive life-sustaining treatments as they approach end of life. OBJECTIVES: To examine factors contributing to nonconcordance between end-of-life care and advance care planning. METHODS: In this longitudinal retrospective cohort study, terminally ill patients with a life expectancy shorter than six months, who had previously expressed a preference for do-not-resuscitate or comfort care, were followed up after palliative shared care intervention. An instrument with eight items contributing to non-concordant care, developed through literature review and experts' consensus, was employed. An expert panel reviewed electronic medical records to determine factors associated with non-concordant care for each patient. Statistical analysis, including descriptive statistics and the chi-square test, examines demographic characteristics, and associations. RESULTS: Among the enrolled 7871 patients, 97 (1.2%) received non-concordant care. The most prevalent factor was "families being too distressed about the patient's deteriorating condition and therefore being unable to let go" (84.5%) followed by "limited understanding of medical interventions among patients and surrogates" (38.1%), and "lack of patient participation in the decision-making process" (25.8%). CONCLUSIONS: This study reveals that factors related to relational autonomy, emotional support, and health literacy may contribute to non-concordance between advance care planning and end-of-life care. In the future, developing an advance care planning model emphasizes respecting relational autonomy, providing emotional support, and enhancing health literacy could help patients receiving a goal concordant and holistic end-of-life care.
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Planejamento Antecipado de Cuidados , Assistência Terminal , Humanos , Masculino , Feminino , Idoso , Estudos Retrospectivos , Estudos Longitudinais , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Ordens quanto à Conduta (Ética Médica) , Preferência do Paciente , Doente Terminal , Cuidados PaliativosRESUMO
The concept of relationship completion is embodied as the core belief for end-of-life care in Taiwan, known as the Four Expressions in Life. No studies have been published investigating and trying to understand how music therapy facilitates the Four Expressions in Life. This convergent mixed-methods study examined the effects of music therapy to facilitate relationship completion for patients at the end of life and their families in Taiwan, and explored their personal experiences in music therapy sessions. Thirty-four patients at end-of-life care and 36 of their family members participated in a single music therapy session with a one-group pretest-posttest design using standardized quality-of-life measures for patients at the end of life and families. A nested sample of 5 patients and 9 family members completed semi-structured interviews. Significant differences between the pre and post session scores were revealed for patients in the Life Completion subscale of the QUAL-E (pâ <â .001), and the global QoL Indicator (pâ <â .001), and for families in the Completion subscale of the QUAL-E (Fam) (pâ <â .001), and the Overall Quality of Life (pâ <â .001). Four themes around opportunities emerged from the interviews: the opportunity for exploration, for connection, for expression, and for healing. The integrated findings suggest that music therapy facilitated relationship completion and improved quality of life for both patients and their families. Furthermore, this study supports that the transformative level of music therapy practice within a single session for end-of-life care is attainable.
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Musicoterapia , Qualidade de Vida , Assistência Terminal , Humanos , Musicoterapia/métodos , Feminino , Masculino , Assistência Terminal/psicologia , Assistência Terminal/métodos , Taiwan , Pessoa de Meia-Idade , Idoso , Adulto , Família/psicologia , Idoso de 80 Anos ou maisRESUMO
BACKGROUND: Advance Care Planning interventions should be evaluated as broadly as possible to gain a holistic understanding of the Advance Care Planning process. However, validated early stage outcome instruments are lacking. Therefore, the Treatment-Preference-Measure-Advance Care Planning (Treat-Me-ACP) instrument was developed and validated as part of the cluster-randomized controlled trial STADPLAN (Study on Advance Care Planning in care-dependent community-dwelling older persons) to assess the effects of Advance Care Planning interventions on patients' medical treatment preferences. METHODS: The design of Treat-Me-ACP is based on the Emanuel Medical Directive and the Life Support Preferences Questionnaires. Using a multi-stage team approach a preliminary version of the Treat-Me-ACP was developed and pre-tested. The pre-tested instrument consists of one global medical care goal-item, five hypothetical scenarios with five hypothetical treatments, and one how would you feel-item within each scenario. A total of five scenario preference scores and five treatment preference scores can be formed. This version was subsequently applied to a subsample of the STADPLAN project (n = 80) to assess patient's preferences at baseline (T0) and at 12-month follow-up (T2). The further validation steps were based on this subsample and included: (1) acceptance by using completion rate and frequencies of missing data, (2) internal consistency by using Cronbach's α to test whether it was possible to create preference scores by scenario and treatment, (3) concurrent validation examining the association between the global medical care goal-item and the preference scores and the association between the how would you feel-items and the scenario preference scores, and (4) responsiveness of the instrument to changes in preferences for life-sustaining treatments by comparing preference scores from T0 to T2 between study groups. RESULTS: Acceptance of the instrument was high. Results of concurrent validation indicate that the five scenarios represent the global medical care goal well. The preference scores showed an average tendency for decreasing preferences for life-sustaining treatments across all scales for the intervention group during study follow-up. CONCLUSIONS: The Treat-Me-ACP can be used to evaluate the dynamics of patients' medical treatment preferences in Advance Care Planning. It has been validated for care-dependent community-dwelling older persons and can be used as an additional outcome measure in evaluating the effectiveness of ACP interventions. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00016886 on 04/06/2019.
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Planejamento Antecipado de Cuidados , Assistência Terminal , Humanos , Idoso , Idoso de 80 Anos ou mais , Diretivas Antecipadas , Assistência Terminal/métodos , Preferência do Paciente , Vida IndependenteRESUMO
BACKGROUND: As the proportion of older persons in society increases, there is a growing trend towards providing end-of-life care in their homes. Palliative care is a complex and knowledge-demanding form of care, and nurse assistants are those who work closest to the older person at the end-of-life in their own homes. However, nurse assistants sometimes have low educational and insufficient levels of knowledge in palliative care, which can affect the quality of care they provide. Moreover, nurse assistants' experiences are relatively unexplored in this context. The purpose of the study was to illuminate nurse assistants' experiences in caring for dying older persons at home. METHOD: An empirical, qualitative interview study was conducted with 14 nurse assistants with experience of palliative care in homecare. The material was analyzed using thematic content analysis. RESULTS: From the nurse assistant's experiences, one main theme emerged: doing everything possible for the dying older person despite challenges. Moreover, three sub-themes emerged: making a difference at a crucial time, death awakens emotions, and balancing personal and professional relationships. The nurse assistants' saw their role primarily as relieving symptoms but also focusing on next of kin. The following are described as essential parts of their role: carrying out practical nursing tasks, focusing on the physical environment, working alone and seeking help from colleagues due to a physical distance to the other members of the multidisciplinary team. The nurse assistants experienced a lack of support as there was no structured guidance or debriefing available in difficult emotional situations. Furthermore, they disclosed that they were left alone to deal with their feelings. CONCLUSION: This study demonstrates that nurse assistants strive to provide comprehensive care for dying older persons despite facing obstacles from their working conditions and work organization. They lack supervision and education in palliative care, but they rely on their experience-based knowledge to a large extent and provide care according to the four cornerstones of palliative care.
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Casas de Saúde , Assistência Terminal , Humanos , Idoso , Idoso de 80 Anos ou mais , Cuidados Paliativos/psicologia , Assistência Terminal/psicologia , Pesquisa Qualitativa , PercepçãoRESUMO
BACKGROUND AND OBJECTIVE: The indication "existential suffering (ES)" for palliative sedation therapy is included in most frameworks for palliative sedation and has been controversially discussed for decades. The appellative character of ES demands rapid relief and sedation often appears to be the best or only solution. ES is still poorly understood and so often neglected by health care professionals due to a lack of consensus regarding assessment, definition and treatment in the international medical literature. Based on a selective review of the literature on ES we propose a different view on the underlying processes of ES and the resulting consequences on medical treatment. METHODS: A narrative review was performed after PubMed search using key terms related to ES and sedation, covering the period from 1950 to April 2023, additionally a selective search in specialist literature on Existential Analysis. Reverse and forward snowballing followed. The language of analyzed publications was restricted to English and German. KEY CONTENT AND FINDINGS: ES is a multidimensional experience that tends to turn into despair and ultimately into a wish to die due to perceived hopelessness and meaninglessness. Pharmacological treatment or sedation do not meet the holistic needs of existential sufferers. The risk of harmful effects by continuous deep sedation seems to be significantly increased for existentially suffering patients. Professional caregivers are burdened by the appellative character of ES, limited treatment options and perceived empathic distress. Without a holistic understanding of the human condition in palliative care, ES cannot be fundamentally alleviated, and existential sufferers have no opportunity to transform and thus mitigate their condition. The recognition of underlying causes of suffering-moods is facilitated by the comprehensive approach of Existential Analysis. CONCLUSIONS: The presented concept of Existential Analysis and the triad of ES are useful instruments for health care professionals to recognize and support underlying moods of existentially suffering patients. Further studies are required. Comprehensive training for professional caregivers on ES is essential to enable them to reflect on their own existential concerns and finiteness as well as those of patients. Continuous deep sedation for ES must remain the exception, equivalent to a last resort option.
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Assistência Terminal , Humanos , Estresse Psicológico , Hipnóticos e Sedativos/uso terapêutico , Cuidados Paliativos/métodos , ExistencialismoRESUMO
BACKGROUND: In 2020, the Global Cancer Observatory reported 280,000 cases of childhood cancer worldwide, with a higher burden of disease and mortality rates in low- and middle-income countries. In 2022, the National Institute of Health reported 1708 new cases of childhood cancer in Colombia and an overall survival rate of approximately 55%. The aim of this study is to compare outcomes in children with cancer in the hospital setting during the last 72 h of life who received concurrent Pediatric Palliative Care (PPC) versus oncology care alone. METHODS: An observational descriptive study was conducted between January 2013 and June 2022 in a center for pediatric patients with oncological diagnoses. In 2017, the PPC team was created. Patients between 28 days and 17 years of age who were hospitalized at least 72 h before death were included. A retrospective review of the medical records of patients in the last 72 h of life was performed. Two cohorts were established: oncology-alone group received exclusive management by oncology, and oncology and PPC received concurrent oncology and PPC management since the diagnosis. RESULTS: We evaluated 257 medical records of deceased pediatric patients with cancer diagnoses. For the first cohort (2013-2017), 136 patients were included; for the second cohort (2018 and 2022), 121 patients were evaluated. The most frequent diagnosis was leukemia [47.1% (n = 121)]. No significant difference was found in either group between dyspnea, pain, and seizures. Dyspnea was the most frequent symptom in both groups. Agitation and anxiety were reported more frequently in children from the oncology-alone group (22.1% and 13.2%, respectively). The oncology and PPC group received more psychology and social work consultation (94.2% and 70.2% vs. 84.6 and 54.4% in the oncology alone group) and had a higher percentage of advance care planning (79.3% vs. 62.5% in the oncology alone group). CONCLUSIONS: This retrospective study highlights that PPC at the end of life (EoL) offers a holistic approach to the physical and psychosocial symptoms experienced by children with cancer; these patients received more comfort through symptom management and less aggressive treatment at the EoL. The availability of a PPC team may contribute to improvements in the quality of end-of-life care. TRIAL REGISTRATION: retrospectively registered.
Assuntos
Neoplasias , Assistência Terminal , Criança , Humanos , Cuidados Paliativos/psicologia , Estudos Retrospectivos , Assistência Terminal/psicologia , Neoplasias/complicações , Neoplasias/terapia , Dispneia , MorteRESUMO
BACKGROUND: The aim of this study was to describe the implementation of integrated palliative care (PC) and the intensity of care in the last 3 months before death for patients with metastatic breast cancer. MATERIALS AND METHODS: We conducted a multicentric study of all adult patients with metastatic breast cancer who died over a 4-month period. Complete data were collected and checked from clinical records, including PC interventions and criteria regarding EOL care aggressiveness. RESULTS: A total of 340 decedent patients from 12 comprehensive cancer centres in France were included in the study. Sixty-five percent met the PC team with a median time of 39 days between the first intervention and death. In the last month before death, 11.5% received chemotherapy, the frequency of admission to intensive care unit was 2.4%, and 83% experienced acute hospitalization. The place of death was home for 16.7%, hospitalization for 63.3%, PC unit for 20%. Univariate and multivariate analyses showed factors independently associated with a higher frequency of chemotherapy in the last month before death: having a dependent person at home, meeting for the first time with a PC teamâ <â 30 days before death, and time between the first metastasis and death below the median. CONCLUSION: PC team integration was frequent and late for patients with metastatic breast cancer. However, PC interventionâ >â 30 days is associated with less chemotherapy in the last month before death. Further studies are needed to better understand how to implement a more effective mode of PC integration for patients with metastatic breast cancer.
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Neoplasias da Mama , Cuidados Paliativos , Assistência Terminal , Humanos , Neoplasias da Mama/terapia , Neoplasias da Mama/patologia , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/mortalidade , Feminino , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Assistência Terminal/normas , Pessoa de Meia-Idade , Idoso , Metástase Neoplásica , Adulto , França , Idoso de 80 Anos ou maisRESUMO
BACKGROUND: Medical assistance in dying (MAiD) was legalized in Canada in 2016, but coordination of MAiD and palliative and end-of-life care (PEOLC) services remains underdeveloped. We sought to understand the perspectives of health leaders across Canada on the relationship between MAiD and PEOLC services and to identify opportunities for improved coordination. METHODS: In this quantitative study, we purposively sampled health leaders across Canada with expertise in MAiD, PEOLC, or both. We conducted semi-structured interviews between April 2021 and January 2022. Interview transcripts were coded independently by 2 researchers and reconciled to identify key themes using content analysis. We applied the PATH framework for Integrated Health Services to guide data collection and analysis. RESULTS: We conducted 36 interviews. Participants expressed diverse views about the optimal relationship between MAiD and PEOLC, and the desirability of integration, separation, or coordination of these services. We identified 11 themes to improve the relationship between the services across 4 PATH levels: client-centred services (e.g., educate public); health operations (e.g., cultivate compassionate and proactive leadership); health systems (e.g., conduct broad and inclusive consultation and planning); and intersectoral initiatives (e.g., provide standard practice guidelines across health care systems). INTERPRETATION: Health leaders recognized that cooperation between MAiD and PEOLC services is required for appropriate referrals, care coordination, and patient care. They identified the need for public and provider education, standardized practice guidelines, relationship-building, and leadership. Our findings have implications for MAiD and PEOLC policy development and clinical practice in Canada and other jurisdictions.
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Suicídio Assistido , Assistência Terminal , Humanos , Canadá , Pesquisa Qualitativa , Assistência Médica , Cuidados PaliativosRESUMO
This review highlights the significance of supportive care for elderly patients with cancer and their caregivers. Supportive care for older patients with cancer focuses on improving their quality of life by addressing physical, psychological, social, and spiritual aspects related to the treatment and care of the patient. Patient-reported outcomes and family involvement may play significant roles in providing holistic support. Interdisciplinary collaboration among healthcare professionals ensures effective treatment and enhances the patient's journey throughout the disease trajectory.
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Neoplasias , Assistência Terminal , Humanos , Idoso , Qualidade de Vida , Cuidados Paliativos , Assistência Terminal/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Cuidadores/psicologiaRESUMO
AIM: To describe uncertainty in surrogate decision-making regarding end-of-life care for people with dementia using Mishel's reconceptualized uncertainty in illness theory. DESIGN: Integrative literature review using Whittemore and Knafl's approach. DATA SOURCES: PubMed, CINAHL, EMBASE, Scopus and Web of Science were searched using terms such as uncertainty/unpredictability, decision-making/advance care planning/end-of-life care planning, surrogate/family/caregiver/proxy and dementia. The search was initially conducted on 28 September 2021 and updated on 31 July 2023. REVIEW METHODS: Through systematic screening, 20 research articles were included in the analysis. Content related to uncertainty in surrogate decision-making regarding end-of-life care was extracted and analysed, focusing on the reconceptualized uncertainty in illness theory. RESULTS: First, surrogate uncertainty exists in various areas of surrogate decision-making regarding end-of-life care. Second, antecedents of surrogate uncertainty include numerous intrinsic and extrinsic factors. Third, surrogates exhibited some negative psychological responses to uncertainty but continually processed and structured their uncertainty through certain approaches, leading them to grow as decision-makers. Finally, research-based evidence on surrogates' processing of uncertainty and shifts to new life perspectives remains limited. CONCLUSION: Surrogates' uncertainty in decision-making regarding end-of-life care for people with dementia is well characterized using the reconceptualized uncertainty in illness theory. Healthcare providers should help surrogates manage their uncertainty in surrogate decision-making more constructively throughout the dementia trajectory. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The findings highlight the importance of assessing how surrogates process uncertainty and gauging how to help them process uncertainty and transition to new life perspectives. IMPACT: This review contributes to healthcare professionals' understanding of surrogates' uncertainty in end-of-life care planning for people with dementia, especially what they are uncertain about, what influences their uncertainty and how they process it. REPORTING METHOD: This study adheres to the PRISMA reporting guidelines. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.
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Tomada de Decisões , Demência , Procurador , Assistência Terminal , Humanos , Demência/psicologia , Demência/enfermagem , Demência/terapia , Assistência Terminal/psicologia , Incerteza , Procurador/psicologia , Planejamento Antecipado de Cuidados , Idoso , Cuidadores/psicologia , Masculino , Feminino , Idoso de 80 Anos ou maisRESUMO
OBJECTIVES: Within the multidisciplinary team, there can sometimes be lack of clarity as to the specific different contributions of each of the psycho-social-spiritual professionals: social workers, psychologist, and spiritual caregivers. This study examined the content of their end-of-life conversations with patients. METHODS: A total of 180 patients with terminal cancer received standard multidisciplinary care, including conversations with a social worker, psychologist, and spiritual caregiver. After each patient's death, these professionals reported using a structured tool which content areas had arisen in their conversations with that patient. RESULTS: Across all content areas, there were significant differences between social work and spiritual care. The difference between social work and psychology was slightly smaller but still quite large. Psychology and spiritual care were the most similar, though they still significantly differed in half the content areas. The differences persisted even among patients who spoke with more than 1 kind of professional. The 6 content areas examined proved to subdivide into 2 linked groups, where patients speaking about 1 were more likely to speak about the others. One group, "reflective" topics (inner and transpersonal resources, interpersonal relationships, one's past, and end of life), included all those topics which arose more often with spiritual caregivers or psychologists. The second group, "decision-making" topics (medical coping and life changes), was comprised of those topics which arose most commonly with social workers, bridging between the medical and personal aspects of care and helping patients navigate their new physical, psychological, and social worlds. SIGNIFICANCE OF RESULTS: These findings help shed light on the differences, in practice, between patients' conversations with social workers, psychologists, and spiritual caregivers and the roles these professionals are playing; can aid in formulating individualized care plans; and strengthen the working assumption that all 3 professions contribute in unique, complementary ways to improving patients' and families' well-being.
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Terapias Espirituais , Assistência Terminal , Humanos , Espiritualidade , Serviço Social , Cuidadores/psicologia , Morte , Assistência Terminal/psicologiaRESUMO
The advancement in the knowledge and skills required by the Specialist Community Practitioner District Nurse (SCPDN) is integral in supporting end-of-life care. An integrated and multi-disciplinary team approach is pivotal for high quality patient care delivery, which involves individuals and their significant others in decision-making at a sensitive time. Advanced care planning and the use of therapeutic communication by the SCPDN can help to support autonomy in individuals during uncertain times, enabling them to express their end-of-life wishes. The SCPDN, guided by the evidence base, must provide holistic care and manage palliation while ensuring the patient is at the centre of all decisions.
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Planejamento Antecipado de Cuidados , Assistência Terminal , Humanos , Morte , PacientesRESUMO
End-of-life (EOL) care is a unique area of medicine that emphasizes holistic patient-centered care. It requires clinicians to consider a patients' mental, emotional, spiritual, social and physical comforts and engage patients and their families in complex discussions and decisions. It is an area of medicine that requires sensitivity in communication in order to respond to a wide range of emotions from patients and their families. Given these intricacies, it is essential that healthcare professional trainees are exposed early in their careers so they can be better equipped to address EOL situations effectively. While many medical schools have integrated this important element in pre-clinical education, a formalized and standardized curriculum could allow for students to better engage in EOLcare scenarios that they will face as future physicians. In this editorial, we discuss potential strategies to incorporate EOL care didactics and experiential learning earlier in medical education as well as the consequences of inadequate EOL care education, particularly in medical schools, in its current state.
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Educação Médica , Cuidados Paliativos na Terminalidade da Vida , Médicos , Assistência Terminal , Humanos , Assistência Terminal/psicologia , Currículo , Cuidados PaliativosRESUMO
BACKGROUND: Timely recognition of dying is important for high quality end-of-life care however, little is known about how clinicians recognise dying. Late recognition is common and can lead to futile treatment that can prolong or increase suffering and prevent a change in the focus of care. AIM: To explore how clinicians caring for dying people recognise that they are in the last days or hours of life, as well as the factors that influence the recognition of dying. DESIGN: A systematically constructed integrative review of the literature. METHODS: Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, PsycInfo and Allied and Complementary Medicine were searched in July 2022. Papers were included if they were original research, discussed how clinicians recognise dying, available in English language and published in 2012 or later. A constant comparison approach was applied to the analysis and synthesis of the literature. RESULTS: 24 papers met the inclusion criteria. There were 3 main categories identified: 'Clues and signals' refers to prompts and signs that lead a clinician to believe a person is dying, incorporating the sub-categories 'knowing the patient over time', and 'intuition and experience'. 'Recognition by others' is where clinicians come to recognise someone is dying through others. This can be through a change in the context of care such as a tool or care plan or by communication with the team. 'Culture, system and practice' refers to the cultural beliefs of a setting that influences awareness of dying and denial of death as a possibility and avoidance of naming death and dying directly. System and practice of the setting also impact on recognition of dying. This involves work pace and intensity, shift systems and timing of senior reviews of patients. Uncertainty and its impact on recognition of dying are evident throughout the findings of this review. The seeking of certainty and the absence of the possibility of dying contributes to late recognition of dying. DISCUSSION: Recognition of dying is a complex process that occurs over time, involving a combination of intuition and gathering of information, that is influenced by contextual factors. A culture where dying is not openly acknowledged or even named explicitly contributes to late recognition of dying. A shared language and consistent terminology for explicitly naming dying are needed. Uncertainty is intrinsic to the recognition of dying and therefore a shift to recognising the possibility of dying rather than seeking certainty is needed. REGISTRATION: (PROSPERO) CRD42022360900. Registered September 2022.
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Assistência Terminal , Humanos , Incerteza , Comunicação , Idioma , Cuidados PaliativosRESUMO
Background: Antimicrobials are frequently administered at end-of-life (EOL) and their non-beneficial use may subject patients to unnecessary harms. Studies analyzing factors for antimicrobial prescribing in solid tumor cancer patients at the EOL are lacking. Thus, we aimed to identify factors and patterns associated with antimicrobial use in hospitalized adults with cancer at EOL. Methods: We used a retrospective cohort design to review electronic medical records of terminal hospitalized patients ≥18 years with solid tumors admitted to non-intensive care units in a metropolitan comprehensive cancer center during 2019 and assessed antimicrobial use in the last 7 days of life. Results: Among 633 cancer patients, 59% (n = 376) received antimicrobials (AM+) within the last 7 days of life. AM + patients were older (P = .012), mostly of male gender (55%), and non-Hispanic ethnicity (87%). AM + patients were significantly more likely to have a foreign device, suspected signs of infection, neutropenia, positive blood culture result, documented advance directive; receive laboratory or radiologic testing, and a palliative care or infectious disease consultation (all P < .05). No statistically significant differences were observed in the presence of documented goals of care discussions, or EOL discussions/EOL care orders. Conclusion: Antimicrobial use at the EOL is common in solid tumor cancer patients at the EOL and is associated with increased utilization of invasive interventions. There is an opportunity for infectious disease specialists to build primary palliative care skills and partner with antimicrobial stewardship programs to better advise patients, decision makers, and primary teams on the use of antimicrobials at the EOL.
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Anti-Infecciosos , Doenças Transmissíveis , Neoplasias , Assistência Terminal , Adulto , Humanos , Masculino , Estudos Retrospectivos , Cuidados Paliativos , Neoplasias/tratamento farmacológico , Neoplasias/diagnóstico , Morte , Anti-Infecciosos/uso terapêuticoRESUMO
BACKGROUND: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life. METHODS: A scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0-19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death). RESULTS: Of the 7377 studies identified, 12 were included for data extraction and content thematic analysis. The themes and subthemes include: 1) valuing the whole person; 2) living while dying; 3) authentic death talk; 4) a supportive approach (with lack and presence of support as subthemes); and, 5) a personalist approach. CONCLUSIONS: There is a pressing need for research into the meaning of dying and death for children, their carers and families in Canada. Lack of holistic care, authentic death talk, specialized pediatric palliative care providers, a personalist approach and communities of support present major gaps in care for Canadian children. Research is urgently needed to address these knowledge gaps to generate policy and support practice for dying children in Canada.