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1.
Palliat Care Soc Pract ; 18: 26323524241260424, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39045295

RESUMO

Background: Due to modern therapies, survival in metastatic renal cell carcinoma (mRCC) has been significantly prolonged. Nevertheless, patients suffering from advanced disease often present with severe symptoms. Early integration of palliative care into anti-cancer treatment has been shown to improve quality of life and may even prolong survival. Therefore, it is recommended to offer palliative care to patients with complex symptoms at the beginning of an advanced disease stage. To our knowledge, so far, no study has been conducted to examine the role of palliative care in patients with mRCC. Objectives: This study aimed to assess the symptom burden and quality of life before and after an inpatient palliative care treatment. Design: The study design is a retrospective observational study. Methods: We included patients with mRCC, who were admitted to our palliative care unit between 2011 and 2017 due to severe symptoms. The symptom burden was assessed at admission, throughout treatment, and at discharge. The evaluation consisted of the palliative care base assessment and daily documentation of relevant symptoms. Results: We evaluated 110 hospitalizations of 58 RCC patients. On average, patients were admitted to the palliative care unit 7 years after initial diagnosis (range 1-305 months). The median age was 70.5 years, 69% of the patients were male, 3% female. The main causes for admission were pain (52%) and dyspnea (26%), and the most frequent patient-reported symptoms were fatigue/exhaustion (87%), weakness (83%), and need for assistance with activities of daily living (83%). Multidisciplinary palliative care treatment led to a significant reduction in the median minimal documentation system (MIDOS) symptom score (15.6-9.9, p < 0.001), the median numeric pain rating scale (3-0, p < 0.001), and a significant reduction in mean ratings of the distress thermometer (5.5-3.1, p = 0.016). Conclusion: Our analysis shows that the integration of palliative care treatment is effective throughout the disease in mRCC and could measurably reduce the symptom burden in our patient population. Palliative care should not be equated with end-of-life care but should rather be integrated throughout advanced disease, particularly as soon as a cure is impossible.

2.
Palliat Care Soc Pract ; 18: 26323524241260427, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39045293

RESUMO

Background: Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. Its goals are to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services and is grounded in equal partnerships between civic life, community members, patients and carers, and service providers. This takes many forms, including what we have termed the 'citizen organization'. Objectives: This paper reports on an evaluation of Little Haven's model of care and explores the organization's place as a 'citizen' of the community it services. Design: A co-designed evaluation approach utilizing mixed-method design is used. Methods: Multiple data sources obtained a broad perspective of the model of care including primary qualitative data from current patients, current carers, staff, volunteers and organizational stakeholders (interviews and focus groups); and secondary quantitative survey data from bereaved carers. Thematic analysis and descriptive statistics were generated. Results: This model of care demonstrates common service elements including early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users, with strong community engagement. These elements enable high-quality care for patients and carers who describe the support as 'over and above', enabling good quality of life and care at home. Staff and volunteers perceive the built-in flexibility of the model as critical to its outcomes; the interface between the service and the community is similarly stressed as a key service element. Organizational stakeholders observed the model as a product of local activism and accountability to the community. Conclusion: All participant groups agree the service model enables the delivery of excellent care. The construction of a community palliative care service as a citizen organization emerged as a new concept.


'Citizen organization': an Australian community-based palliative care service model Little Haven is a rural, community-based specialist palliative care service in Gympie, Australia. It aims to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services in equal partnerships between civic organizations, community members, patients and carers, and service providers. We undertook an evaluation of Little Haven's model of care by speaking with current patients, current and past carers, staff, volunteers and stakeholders about their experiences of Little Haven. We found that Little Haven's model contains the essential elements of a palliative care service and provides early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users. They have strong community engagement with a strong background in community activism. We identified that Little Haven's 'being in the community' goes beyond service provision or even sentiment. We observed a symbiotic relationship between the organization and the community it supports in what we have termed the 'citizen organization'. The distinctive characteristic of the citizen organization is its inseparability from the community in which it dwells.

3.
Palliat Care Soc Pract ; 18: 26323524241263109, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39045294

RESUMO

Background: Palliative care affords numerous benefits, including improvements in symptom management, mental health, and quality of life, financial savings, and decreased mortality. Yet palliative care is poorly understood and often erroneously viewed as end-of-life care and hospice. Barriers for better education of the public about palliative care and its benefits include shortage of healthcare providers specializing in palliative care and generalist clinicians' lack of knowledge and confidence to discuss this topic and time constraints in busy clinical settings. Objectives: Explore and compare the knowledge, values, and practices of community-dwelling adults 19 years and older from Nebraska about serious illness and end-of-life healthcare options. Design: Secondary analysis of cross-sectional data collected in 2022 of 635 adults. We examined the fifth wave (2022) of a multiyear survey focusing on exploring Nebraskans' understanding of and preferences related to end-of-life care planning. Methods: Descriptive statistics and chi-square tests to compare results between groups. Univariable and multivariable logistic regression analyses examine associations of variables as to knowledge of hospice and palliative care. Results: While 50% of respondents had heard a little or a lot about palliative care, 64% either did not know or were not sure of the difference between palliative care and hospice. Those who reported being in poor health were not more likely to know the difference between palliative care and hospice compared to those reporting being in fair, good, or excellent health. Conclusion: This study offers insight into the knowledge and attitudes about palliative care among community-dwelling adults, 19 years and older living in Nebraska. More effort is needed to communicate what palliative care is, who can receive help from it, and why it is not only for people at end of life. Advance care planning discussions can be useful in offering clarity.

4.
BMJ Open Qual ; 13(3)2024 Jul 15.
Artigo em Inglês | MEDLINE | ID: mdl-39009462

RESUMO

BACKGROUND: Compassionate discharges (ComD), commonly known as rapid discharges, are urgent one-way discharges for critically ill hospitalised patients with death expected within hours or less than 7 days, to die at their place of choice-usually in their own home. Challenges abound in this time-sensitive setting when multiple parties must work together to prepare medically unstable patients for discharge, yet healthcare staff are largely unaware of the process, resulting in delays. METHODS: Process mapping, an Ishikawa diagram and a Pareto chart were used to identify barriers, which included timely acquisition of home equipment and medication and poor communication among stakeholders. In May 2020, the Quality Improvement (QI) team embarked on a pilot project to reduce family caregiver anxiety and delays in the ComD process while maintaining a success rate above 90% over a 12-month period. INTERVENTIONS: Three Plan-Do-Study-Act (PDSA) cycles were used to refine a ComD resource package that was developed; this consisted of a checklist, a kit and caregiver resources. This was to support nurses, doctors and families during this difficult and emotional transition. Items in the ComD resource package were revised iteratively based on user feedback, with further data collected to measure its usefulness. RESULTS: The 12-month ComD success rate over 3 PDSA cycles were 88.9%, 94.2% and 96.7%, respectively, after each cycle. There was a consistent reduction in the level of family anxiety before and after caregiver training and resources. Reasons for failed ComD included acute clinical deterioration or delays in obtaining home oxygen support. CONCLUSION: The ComD resource package allowed collaborative work across different disciplines, strengthening the safety and utility of ComD and allowing patients to die in their place of choice. These are ubiquitous across settings; this QI problem is thus relevant beyond our local institution.


Assuntos
Alta do Paciente , Melhoria de Qualidade , Humanos , Alta do Paciente/estatística & dados numéricos , Alta do Paciente/normas , Projetos Piloto , Empatia , Estado Terminal/psicologia , Estado Terminal/terapia , Assistência Terminal/métodos , Assistência Terminal/normas
5.
BMC Palliat Care ; 23(1): 177, 2024 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-39026237

RESUMO

BACKGROUND: Improving palliative care for inpatients is urgently needed. Data from patient-reported experience measures (PREM) can assist in identifying areas for focused improvement. This study aimed to describe patient reported experience of care in inpatients with palliative care needs, to inform a baseline understanding of care experience and identify key areas for improvement. METHODS: Cross-sectional study design where inpatients with palliative care needs were invited to complete 'consideRATE,' a patient reported experience measure of care, over six months in 2022. Inpatients with palliative care needs receiving care on an oncology, general medicine/renal and general medicine/respiratory ward (n = 3) at an Australian metropolitan hospital were screened for eligibility. Carers could provide proxy responses where inpatients were unable to participate. Descriptive statistics were used to analyse quantitative ratings, whilst free text responses were analysed using integrated thematic analysis. RESULTS: One-hundred and twenty participants (108 patients and 12 carers) completed consideRATE. The questions with the highest number of 'very good' responses were attention to symptoms, attention to feelings and attention to what matters most; the questions with the lowest number of 'very good' responses was attention to patients' affairs, what to expect, and the environment of care. Almost half (n = 57, 48%) indicated that attention to patients' affairs 'did not apply' to their inpatient stay. Analysis of 532 free text responses across 8 questions highlighted the importance of feeling supported, feeling informed, feeling heard and navigating the clinical environment. CONCLUSION: Enabling inpatients with palliative care needs to provide feedback about their experience of care is one method of ensuring improvements matter to patients. Supporting clinical teams to understand and use these data to make tailored improvements is the next step in this multi-phase research.


Assuntos
Pacientes Internados , Cuidados Paliativos , Humanos , Estudos Transversais , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Pacientes Internados/psicologia , Pacientes Internados/estatística & dados numéricos , Idoso de 80 Anos ou mais , Adulto , Austrália , Inquéritos e Questionários , Satisfação do Paciente , Medidas de Resultados Relatados pelo Paciente
6.
BMC Palliat Care ; 23(1): 178, 2024 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-39026303

RESUMO

BACKGROUND: Parenteral fluid (PF) therapy of patients in end-of-life (EOL) is controversial. The purpose of this study was to assess associations between PF, quality of the EOL care process and symptom burden in dying cancer patients, using a population-based approach. METHODS: This was a nationwide retrospective register study of all adult cancer deaths with documented information on PF in the last 24 h of life as reported to the Swedish Register of Palliative Care during a three-year period (n = 41,709). Prevalence and relief of symptoms during the last week of life as well as EOL care process quality indicators were assessed in relation to PF in those patients who had a documented decision to focus on EOL care (immediately dying, n = 23,112). Odds ratios were calculated, adjusting for place of death (hospital vs. non-hospital). RESULTS: PF was administered to 30.9% of immediately dying patients in hospitals compared to 6.5% outside of hospitals. PF was associated with a higher likelihood for breathlessness and nausea. In patients screened for EOL symptoms with a validated instrument, PF was inversely associated with the likelihood of complete relief of breathlessness, respiratory secretions, anxiety, nausea and pain. Several palliative care quality indicators were inversely associated with PF, including EOL conversations and prescriptions of injectable drugs as needed. These associations were more pronounced in hospitals. CONCLUSIONS: Parenteral fluid therapy in the last 24 h of life was associated with inferior quality of the EOL care process and with increased symptom burden in imminently dying cancer patients.


Assuntos
Hidratação , Neoplasias , Qualidade da Assistência à Saúde , Sistema de Registros , Assistência Terminal , Humanos , Neoplasias/terapia , Neoplasias/complicações , Masculino , Feminino , Sistema de Registros/estatística & dados numéricos , Idoso , Estudos Retrospectivos , Suécia , Pessoa de Meia-Idade , Assistência Terminal/métodos , Assistência Terminal/normas , Assistência Terminal/estatística & dados numéricos , Idoso de 80 Anos ou mais , Hidratação/métodos , Hidratação/normas , Qualidade da Assistência à Saúde/normas , Qualidade da Assistência à Saúde/estatística & dados numéricos , Adulto , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Carga de Sintomas
7.
J Pediatr Nurs ; 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39025711

RESUMO

PROBLEM: The terminal phase of childhood cancer poses profound physical and mental challenges for children, simultaneously influencing parents and rendering them particularly susceptible to psychosocial issues. ELIGIBILITY CRITERIA: This review included studies exploring the experiences of either: (1) paediatric terminal oncology patients aged under 18 years, (2) parents with a child facing terminal cancer undergoing palliative care, or (3) parents with a child who had undergone palliative care and died. English language, qualitative journal studies or grey literature of any care settings, geographical locations and publication years were included. Studies exploring the experiences of (1) paediatric terminal oncology not receiving palliative care from qualified healthcare professionals, and (3) non-biological parents or non-parental family members, were excluded. SAMPLE: A total of 22 studies were included, published between January 2000 and December 2023. Seventy-two children (aged between 5 and 18 years old) and 236 parents (aged between 24 and 57 years old) participated across all studies. Palliative care settings mostly comprised oncology centres, hospitals and homes. RESULTS: Two themes were identified from the 22 included studies: (1) Navigating rough waters and enduring hardships, and (2) Preparing for end-of-life amidst the looming threat of death. CONCLUSIONS: This review underscored the importance of integrating palliative childhood cancer care in a holistic, age-specific, family-centred, person-centred and timely manner. IMPLICATIONS: Paediatric oncology nurses should attend to physical and psychosocial needs of children and parents, fostering familial and social ties while recognising cultural and spiritual needs. Future research could recruit participants of varying ages, genders, and cultures.

8.
Am J Hosp Palliat Care ; : 10499091241266985, 2024 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-39028002

RESUMO

BACKGROUND: Information about patients with amyothrophic lateral sclerosis (ALS) followed at home is limited. OBJECTIVES: To assess patients's characteristics at admission to a home palliative care program based on a multidisciplinary team, and the temporal course along the trajectory of ALS disease. DESIGN: Retrospective. Setting/subjects: Charts of a consecutive number of ALS patients who were referred to a specialistic home palliative care were reviewed. MEASUREMENT: General data, referral, start of home palliative care, use of ventilator support and nutritional support, were recorded. The existence of advance directives and shared care planning was also collected. RESULTS: 82 patients were examined; 31 patients died before the term of the study and 51 patients were still living. No patient anticipately expressed their will regarding their treatments. However, a certain number of patients shared a care planning with ALS team, generally after starting home care. Most patients did not have ventilatory support at the beginning of home care assistance, but progressively received ventilatory support by NIV or MV, particularly those who were still living. NIV at start of home care was negatively correlated to frontotemporal dementia. (P = 0.015), and directly correlated to referral from hospital and GP (P = 0.031) and awareness of disease (P = 0.034). Gastrostomy at start of home care was positively correlated to referral from hospital (P = 0.046). Gastrostomy during home care was correlated to bulbar SLA (P = 0.017). The use of NIV during home care was positively correlated to shared care planning (P = 0.001). CONCLUSION: The continuous presence of a multi-specialist team may provide timely intervention, guarantee and trust on the part of the patient and family members.

9.
Int J Palliat Nurs ; 30(7): 380-388, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-39028314

RESUMO

METHODS: This qualitative interview study was part of a larger study that interviewed19 participants recruited among patients with cancer registered with Samoa Cancer Society, or patients recently discharged from the main tertiary hospital in Samoa. Interview transcripts were reviewed, and the research team identified the key palliative-care-related themes. RESULTS: Analysis led to the generation of the following key themes: living with pain; resource constraints; support from family and faith; and interactions with healthcare professionals. Most participants were experiencing unresolved pain as a result of poor health knowledge, lack of access to medications and practical issues, such as financial limitations and lack of transport. Participants also reported a lack of resources, including financial constraints, as a significant barrier to effective healthcare. Sources of support for patients with cancer were most commonly strong family relationships and religious faith. Although it was difficult for the participants to access care from healthcare professionals, they found that honest communication about their condition was comforting. However, they were frustrated if they felt communication was unsatisfactory. CONCLUSION: This study provides much needed evidence on the issues that affect the quality of life patients with cancer receiving palliative care and their families in Samoa. It also highlights the intersectionality of these issues and how this compounds the patient experience. Practical recommendations for improving palliative care lie in a few key areas, including a need for improved access to opioids and support for family caregivers. However, from a systemic perspective, the way forward should lie in harnessing the strengths of Samoan culture, including the strong sense of family and the role of religion, to provide support and care for palliative patients.


Assuntos
Neoplasias , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Neoplasias/psicologia , Samoa , Idoso , Cuidados Paliativos/psicologia , Adulto , Qualidade de Vida , Entrevistas como Assunto , Idoso de 80 Anos ou mais , Dor do Câncer/psicologia
10.
Int J Palliat Nurs ; 30(7): 398-403, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-39028316

RESUMO

BACKGROUND: Traditional models of palliative care have been tested by the challenges of caring for increasing numbers of people at the end stages of a chronic non-malignant illness. The COVID-19 pandemic and consequent reliance on telehealth services, has enabled the development of creative models of care. AIMS: To improve home-based palliative care for people with chronic illness using telehealth, and this was demonstrated using quality-of-life measures. METHODS: A total of 35 non-cancer referrals to a community palliative care service were recommended for the pilot project, with one specialist palliative care nurse as their contact. All were offered a telehealth service with a specially designed app to self-monitor their symptoms, a session on advance care directives, and self-rated quality-of-life measures using the RAND 36-Item Health Survey (Version 1.0), consisting of 36 items that cover nine domains. Statistical analysis was performed using SPSS software. FINDINGS: Over the 21 months of the pilot study, 13 people chose to participate in the pilot. For participants, telehealth meant more control over their symptoms, fewer emergency presentations and appointment travel time was alleviated. Quality-of-life surveys highlighted physical impairments, which did not change over time. CONCLUSION: This pilot programme demonstrated an innovative approach to addressing the demands of people dying of chronic illness, with further work required to explore the place of telehealth consultations in the overall healthcare system.


Assuntos
COVID-19 , Cuidados Paliativos , Telemedicina , Assistência Terminal , Humanos , Telemedicina/organização & administração , Doença Crônica , Projetos Piloto , COVID-19/epidemiologia , Masculino , Feminino , Austrália , Idoso , Cuidados Paliativos/organização & administração , Pessoa de Meia-Idade , Qualidade de Vida , Idoso de 80 Anos ou mais , SARS-CoV-2 , Pandemias , Serviços de Assistência Domiciliar/organização & administração
11.
Int J Palliat Nurs ; 30(7): 404-412, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-39028312

RESUMO

BACKGROUND: The literature on the use of inflammatory indexes for palliative care patients without malignancy is scarce. AIMS: To determine which inflammatory indexes are associated with the mortality risks of non-malignant patients hospitalised and receiving palliative care. METHODS: Discharged or deceased patients in a palliative care unit of a secondary care hospital were included. The laboratory values were obtained during the first 48 hours of hospitalisation. FINDINGS: As a result of univariate Cox regression analysis, 14-day mortality rate was affected by lymphocyte ratio, neutrophil-to-albumin ratio (NAR), C-reactive protein/albumin ratio (CAR), multi-inflammatory indexes (MII-1) and MII-2 (p<0.001, p=0.001, p=0.002, p=0.009 and p=0.003, respectively); NLR, CLR, NAR, CAR, MII-1 and MII-2 (respectively p=0.005, p<0.001, p<0.001, p<0.001, p=0.001 and p<0.001) affected 28-day mortality rate. Indexes that statistically significantly increased both 14-day and 28-day mortality rates independently of other variables were CLR, NAR, CAR, MII-1 and MII-2. CONCLUSION: High values in inflammatory indexes, including C-reactive protein and albumin increase the risk of 14-day and 28-day mortality rates in palliative care non-malignant patients.


Assuntos
Proteína C-Reativa , Inflamação , Cuidados Paliativos , Humanos , Masculino , Feminino , Idoso , Inflamação/mortalidade , Pessoa de Meia-Idade , Proteína C-Reativa/análise , Idoso de 80 Anos ou mais , Adulto , Albumina Sérica/análise
12.
Int J Palliat Nurs ; 30(7): 370-378, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-39028315

RESUMO

BACKGROUND: Caring for patients with advanced cancer is complex and challenging, requiring varied expertise, including symptom management, communication skills, care coordination and emotional resilience. Within existing literature, the lived experiences of oncology nurses are poorly articulated in countries with a lower income where formal palliative care (PC) is absent. AIM: To explore the lived experiences of Gazan oncology nurses who provide care to patients with advanced cancer in healthcare systems, without formal palliative care infrastructure. METHODS: A phenomenological approach was adopted. Semi-structured interviews were conducted between January and April 2022, in the Turkish Palestinian Friendship Hospital. Thematic analysis used the themes (corporeality, relationality, spatiality and temporality) to facilitate reflection on the meaning of participants' lived experiences. RESULTS: Interviews were undertaken with 16 oncology nurses. The experience of the 'erosion of nurses' work when coping with anxious attachments to patients and families' was the overarching theme in nurses' views, characterised by five sub-themes: (1) inadequacy of PC training and resources, (2) serving humanity, (3) pride in their profession, (4) existential distress and the coping strategies used by nurses, and (5) reported stress and anxiety when caring for seriously ill patients and their families. CONCLUSIONS: The study sheds light on the challenges and powerful emotions experienced by oncology nurses who care for patients with advanced cancer, yet lack the necessary PC training and institutional resources. The findings indicate an urgent need for PC training for nurses within the Gazan healthcare system and other lower-income settings. Assessing nurses' emotions and relationships with patients and family caregivers is imperative to enable optimum care for patients with cancer and to foster resilience among their nurses.


Assuntos
Neoplasias , Enfermagem Oncológica , Humanos , Neoplasias/enfermagem , Adulto , Feminino , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Pesquisa Qualitativa , Adaptação Psicológica , Turquia , Entrevistas como Assunto
13.
Artigo em Inglês | MEDLINE | ID: mdl-38964428

RESUMO

BACKGROUND: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these parents are confronted with may lead to specific care needs. In this paper we explore the spiritual dimension of caring for a child with a life-threatening condition from the parents perspective. METHODS: We held an exploratory qualitative study with in-depth interviews with parents of children (0-21) with life-threatening conditions. Interviews were transcribed and subsequently thematically analyzed. RESULTS: Twenty-four parents of 21 children participated in the interviews. The spiritual dimension is an important, although not always visible, aspect of the experience of parents dealing with their child's illness. The main domains with regard to spirituality were: 1) identity; 2) parenthood; 3) connectedness; 4) loss or adjustment of goals; 5) agency; 6) navigating beliefs and uncertainties; and 7) decision-making. Parents also reflected on their spiritual care needs. CONCLUSION: The spiritual dimension plays a central role in the experiences of parents who care for children with life-threatening conditions, but they receive little support in this dimension, and care needs often go unnoticed. If we want to provide high-quality pediatric palliative care including adequate spiritual support for parents, we should focus on the wide range of their spiritual experiences, and provide support that focuses both on loss of meaning as well as on where parents find growth, joy or meaning.

15.
Support Care Cancer ; 32(8): 518, 2024 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-39017732

RESUMO

PURPOSE: A large volume of literature suggests that timely integration of palliative care (PC) enhances the well-being, quality of life and satisfaction of patients and their families. It may also positively impact clinical outcomes and healthcare costs throughout the disease trajectory. Therefore, reviewing clinical practice to reflect real-life situations regarding timely PC integration is essential. METHODS: This study, conducted at the Vienna General Hospital between March 2016 and August 2022, retrospectively examined PC consultation (PCC) requests. It aimed to assess the timeliness of PC integration by analysing the duration between diagnosis and the first PCC request, as well as the interval between the first PCC request and death. RESULTS: This study included 895 PCCs. The median time from diagnosis to the first PCC was 16.6 (interquartile range (IQR): 3.9-48.4) months, while the median time from the first PCC to death was 17.2 (IQR: 6.1-50.7) days. The median time from diagnosis to first PCC was 10.4 months in females (confidence interval (CI): 6.0-14.8) compared to 10.6 months in males (CI: 8.1-13.1; p = 0.675). There were no gender disparities in the time from first PCC to death, with a median of 23.3 days (CI: 15.6-31.0) for females and 22.3 days (CI: 16.2-28.4) for males (p = 0.93). Fifty percent of patients died between 5 and 47 days after the first PCC. CONCLUSION: These findings highlight the discrepancy between the clinical perception of PC as end-of-life care and the existing literature, thereby emphasising the importance of timely PC integration.


Assuntos
Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/organização & administração , Estudos Retrospectivos , Masculino , Feminino , Idoso , Pessoa de Meia-Idade , Fatores de Tempo , Qualidade de Vida , Áustria , Idoso de 80 Anos ou mais , Neoplasias/terapia , Encaminhamento e Consulta , Adulto
16.
Sci Rep ; 14(1): 16524, 2024 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-39019922

RESUMO

Recent clinical trials have found that the serotonergic psychedelic psilocybin effectively alleviates anxiodepressive symptoms in patients with life-threatening illnesses when given in a supportive environment. These outcomes prompted Canada to establish legal pathways for therapeutic access to psilocybin, coupled with psychological support. Despite over one-hundred Canadians receiving compassionate access since 2020, there has been little examination of these 'real-world' patients. We conducted a prospective longitudinal survey which focused on Canadians who were granted Section 56 exemptions for legal psilocybin-assisted psychotherapy. Surveys assessing various symptom dimensions were conducted at baseline, two weeks following the session (endpoint), and optionally one day post-session. Participant characteristics were examined using descriptive statistics, and paired sample t-tests were used to quantify changes from baseline to the two-week post-treatment endpoint. Eight participants with Section 56 exemptions (four females, Mage = 52.3 years), all with cancer diagnoses, fully completed baseline and endpoint surveys. Significant improvements in anxiety and depression symptoms, pain, fear of COVID-19, quality of life, and spiritual well-being were observed. Attitudes towards death, medical assistance in dying, and desire for hastened death remained unchanged. While most participants found the psilocybin sessions highly meaningful, if challenging, one reported a substantial decrease in well-being due to the experience. These preliminary data are amongst the first to suggest that psilocybin-assisted psychotherapy can produce psychiatric benefits in real-world patients akin to those observed in clinical trials. Limited enrollment and individual reports of negative experiences indicate the need for formal real-world evaluation programs to surveil the ongoing expansion of legal access to psychedelics.


Assuntos
Alucinógenos , Psilocibina , Psicoterapia , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ansiedade/tratamento farmacológico , Canadá , Ensaios de Uso Compassivo , Depressão/tratamento farmacológico , Alucinógenos/uso terapêutico , Estudos Longitudinais , População Norte-Americana , Estudos Prospectivos , Psilocibina/uso terapêutico , Psicoterapia/métodos , Qualidade de Vida
18.
Radiography (Lond) ; 30(5): 1308-1316, 2024 Jul 24.
Artigo em Inglês | MEDLINE | ID: mdl-39053187

RESUMO

INTRODUCTION: Patients receiving end-of-life care often undergo medical imaging examinations in hospitals to inform symptom management and care. Yet little is known about the experiences of the radiography workforce who deliver it. This study aims to describe and explore experiences of the UK radiography workforce delivering medical imaging as part of patients' end-of-life care. METHODS: A mixed method cross-sectional online survey disseminated via social media and national organisations from September 2023 to January 2024. Diagnostic radiographers, assistant practitioners and radiology assistants involved in the medical imaging of patients receiving end-of-life care in UK hospitals. RESULTS: 120 valid responses were received. Most respondents received no education/training (91.6%) on the role of medical imaging in end-of-life care, despite 87.7% expressing a need for education, particularly around adopting supportive/palliative-centric communication techniques. Although most respondents (89.2%) had heard of end-of-life care, some had difficulty understanding the role of medical imaging in end-of-life care. Insufficient information provided on imaging requests hindered the workforces' ability to determine and understand the appropriate use of medical imaging during end-of-life care. These uncertainties exacerbated negative emotions, with 80.8% of respondents indicating that they felt emotional during or after imaging patients on end-of-life care. CONCLUSION: Educational and policy needs were identified around facilitating more supportive/palliative-centric communication techniques and providing the radiography workforce with the knowledge to better understand, explain, deliver and where necessary, challenge the use of medical imaging in end-of-life care. IMPLICATIONS FOR PRACTICE: This study has evidenced the important role the radiography workforce play in generalist end-of-life care. However, there is a need for training to support practitioners as well as appropriate policies to develop supportive and high-quality end-of-life care in medical imaging.

19.
Curr Oncol ; 31(7): 4093-4104, 2024 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-39057177

RESUMO

Despite sparse evidence and limited guidance on indications, use, and dosing, midazolam is widely used in palliative care. We aimed to describe and compare the use of midazolam in three different countries to improve clinical practice in palliative care. We performed an online survey among palliative care physicians in Norway, Denmark, and the United Kingdom (UK). The focus was indications, dosing, administration, and concomitant drugs. A web-based questionnaire was distributed to members of the respective national palliative medicine associations. The total response rate was 9.4%. Practices in the UK, Norway, and Denmark were overall similar regarding the indications of midazolam for anxiety, dyspnoea, and pain treatment in combination with opioids. However, physicians in the UK used a higher starting dose for anxiety, dyspnoea, and pain treatment compared to Norway and Denmark, as well as a higher maximum dose. Danish physicians preferred, to a higher degree, on-demand midazolam administration. Despite practice similarities in the UK, Norway, and Denmark, differences exist for midazolam dosing and administration in palliative medicine. We demonstrated a lack of consensus on how midazolam should be used in palliative care, setting the stage for future studies on the topic.


Assuntos
Midazolam , Cuidados Paliativos , Humanos , Midazolam/uso terapêutico , Midazolam/administração & dosagem , Cuidados Paliativos/métodos , Inquéritos e Questionários , Reino Unido , Dinamarca , Noruega , Medicina Paliativa , Padrões de Prática Médica/estatística & dados numéricos
20.
Clin Ter ; 175(4): 252-258, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39010810

RESUMO

Abstract: The right to live with dignity during the final stages of existence, enshrined in national and supranational Charters of Rights, represents a significant step towards humanizing medicine and is integral to the right to health. Palliative Care, rooted in health, dignity, and therapeutic self-determination, has emerged as a fundamental human right and a moral imperative within health systems. It seeks to alleviate suffering, emphasizing the holistic well-being of patients with life-limiting illnes-ses. This paper provides an analysis of the current situation of Palliative Care in Italy and examines its critical aspects, also in relation to the issues found in other European and non-European countries. In Italy, although laws have been enacted to ensure the provision of Palliative Care, its availability remains inconsistent across different regions. Financial constraints and insufficient support hinder the comprehensive dissemination of these services. Recognizing the significance of Palliative Care, the Catholic Church also endorses its implementation as a response to human suffering and an approach to end-of-life care. Efforts to strengthen Palliative Care are critical to meeting the rising demand and ensuring access to compassionate and dignified care for all individuals in need. Through legislative advancements and adequate resources, Italy can make significant strides in advancing the provision of Palliative Care.


Assuntos
Direitos Humanos , Cuidados Paliativos , Itália , Cuidados Paliativos/legislação & jurisprudência , Cuidados Paliativos/ética , Humanos , Direitos Humanos/legislação & jurisprudência , Catolicismo
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