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Palliative care approaches patients and their suffering with a bio-psycho-social-spiritual model. Thus, it is the strength of palliative care to complement the diagnosis driven approach of medical cancer care by a problem and resources-based assessment, participatory care plan and person-directed interventions. Interventions need to reflect timely prognosis, target population (the patient, the family carer, the professional) and level of trust and remaining energy. In palliative care the relevance of psycho-oncological aspects in the care of the terminally ill is considerable in the understanding of the overall suffering of patients approaching death and their loved ones and in their care and support. There is little evidence to date in terms of clinical benefit of specific psycho-oncological interventions in the last months or weeks of life, but there is evidence on effects of stress reduction and reduced anxiety if locus of control can stay within the patient as long as possible. One major challenge in psychosocial and palliative care research, however, is defining patient relevant outcomes.
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Neoplasias/psicologia , Cuidados Paliativos , Estresse Psicológico , Ansiedade , Cuidadores , Humanos , Neoplasias/terapiaRESUMO
BACKGROUND: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. AIM: To assess national models and methods for financing and reimbursing palliative care. DESIGN: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. RESULTS: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. CONCLUSION: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.
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Cuidados Paliativos na Terminalidade da Vida/economia , Modelos Econômicos , Cuidados Paliativos/economia , Mecanismo de Reembolso/economia , Inglaterra , Alemanha , Humanos , Hungria , Irlanda , Países Baixos , Nova Zelândia , Noruega , Polônia , Espanha , Suécia , Suíça , Estados Unidos , País de GalesRESUMO
Palliative care approaches the patient and his or her suffering with a biopsychosocial-spiritual model. Thus, it is the strength of palliative care to complement the diagnosis driven approach of medical cancer care by a problem and resources-based assessment, participatory care plan, and patient-directed interventions. Interventions need to reflect timely prognosis, target population (the patient, the family carer, the professional), and level of trust and remaining energy. In palliative care the relevance of psycho-oncological aspects in the care of the terminally ill is considerable in the understanding of the overall suffering of patients approaching death and their loved ones and in their care and support. There is little evidence to date in terms of clinical benefit of specific psycho-oncological interventions in the last months or weeks of life, but there is evidence on effects of stress reduction and reduced anxiety if locus of control can stay within the patient as long as possible. One major difficulty in psychosocial research at the end-of-life, however, is defining patient relevant outcomes.
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Neoplasias/psicologia , Cuidados Paliativos , Ansiedade/terapia , Depressão/terapia , Humanos , Neoplasias/terapia , Equipe de Assistência ao Paciente , Qualidade de VidaRESUMO
Background: In Switzerland, palliative care (PC) clinical training is well established at undergraduate and specialist postgraduate levels. However, postgraduate nonspecialist training curricula are less documented. Local Problem: A structured curriculum for nonspecialist rotation within internal medicine (IM) in specialized PC wards is lacking. Objective: To pilot two versions of a PC nonspecialist curriculum for IM residents in Swiss PC units. Methods: In the pilot phase, two curricula-short immersion (3-10 weeks, based on the University of Toronto's Internal-Medicine PC Rotation) and standard nonspecialist (11-18 weeks, based on the Canadian Society of Palliative Care Physician Competencies)-were assessed using a mixed-method online survey. One university and two nonuniversity sites participated. The analysis was descriptive. Results: Five residents and eight supervisors of five training rotations (July-October 2023) responded. Overall, curriculum quality and feasibility (content and time) received positive ratings across all groups, with high satisfaction concerning organization, educational design, learning support, climate, experience, and facilities. Nonuniversity sites were generally rated more positively than university sites. Qualitative feedback paralleled these findings, highlighting the curriculum's relevance and fit with learners' needs and suggesting potential simplifications and more personalized planning. Conclusions: Establishing short and standard duration curricula for a PC program is viable and well received by nonspecialist trainees. Future implementation should concentrate on personalized learning objectives and streamlining the content and structure of the competencies. Cooperation within various training settings (university and regional hospitals) as well as on an international level (e.g., Canada-Switzerland) may further improve the quality of the proposed training formats.
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BACKGROUND: Telemedicine in palliative care (PC) is increasingly being used, especially in outpatient settings with large geographic distances. Its proven benefits include improved communication, coordination quality and time savings. However, the effect on symptom control is less evident. Whether these benefits apply to the Swiss setting and the needs of healthcare professionals (HCPs) is unknown. OBJECTIVES: To identify the perceptions and needs of healthcare professionals (nurses and physicians) regarding telemedicine (generally and specifically for care conferences) in a Swiss outpatient palliative care network. METHODS: We conducted a cross-sectional, mixed-method online survey with purposefully sampled healthcare professionals from an outpatient palliative care team as baseline data during the planning phase of a quality improvement project (digital care conferences). FINDINGS/RESULTS: Of the 251 HCPs approached, 66 responded, including nurses (n = 37) and physicians (n = 29), with an overall response rate of 26.6%. These were distributed into two groups: general palliative care HCPs (n = 48, return rate 21.3%) and specialised palliative care HCPs (n = 18, return rate 69.2%). Generally, telemedicine was perceived as useful. Potential easy access to other HCPs and hence improved communication and coordination were perceived as advantages. Barriers included a lack of acceptance and physical contact, unsolved questions about potential data breaches and technical obstacles. Regarding digital care conferences, the perceived acceptance and feasibility were good; preferred participants were the specialised palliative care HCPs (nurses and physicians), primary physicians and home care nurses, as well as the leadership of a nurse. The needs of the HCPs were as follows: (a) clear and efficient planning, (b) usability and security and (c) visual contact with the patient. CONCLUSION: Digital care conferences are perceived as a feasible and useful tool by healthcare professionals in a local palliative care network in Switzerland. A pilot phase will be the next step towards systematic integration of this telemedicine modality into outpatient palliative care.
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Cuidados Paliativos , Médicos , Humanos , Pacientes Ambulatoriais , Estudos Transversais , Pessoal de SaúdeRESUMO
BACKGROUND: Quality in health care is a complex framework with many components. The word "quality" is used in different official settings and different contexts (public health, certification, patient safety). On individual and team levels, the perception of quality is heterogenous, and the term is often used beyond the theoretical framework. Therefore, it remains a challenge to describe the perceived quality of care in the clinical setting. The aim of this paper is to present a simple concept that can be used to visually define the perceived quality of care for the individual health care professional. METHODS/CONCEPT: An experience-based concept that uses different levels of "quality of care" individually to guide the supervision of health care professionals (residents) and quality goal setting in teams is presented, with the assumption that the ambition of any health care professional is to provide excellence in care. Three perceived levels of quality of care are defined, described, and visualized, namely, a) security, b) comfort, and c) perfection. The "comfort level" defines a sustainable level of care where the optimal balance between good patient care and resource use is achieved. Excellence of care is located between the comfort and the perfection level. The practical application of this proposed concept is described in three settings, namely, 1) the threshold for asking advice from the supervisor (resident physicians), 2) in supervision/coaching discussions between residents and supervisors, and 3) in the analysis of perceived quality of care and goals setting within the team. CONCLUSION: A simplified, purpose-built but well-defined concept to visually depict the perception of quality of care by clinicians can be useful in clinical practice, for the supervision of residents and for team dynamics.
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Pessoal de Saúde , Segurança do Paciente , Alemanha , HumanosRESUMO
BACKGROUND: Telemedicine in palliative care was initially developed in countries where geography or resources limit access to care services. Recently, largely owing to the COVID-19 pandemic, this technology is being increasingly used in highly urbanised countries such as Switzerland. However, there is still scepticism regarding whether these tools can be used effectively in palliative care, a relationship-based speciality that is generally highly dependent on compassion, communication and direct human interaction. The objective of this review was to analyse the needs, elements of feasibility, and reasons for acceptance or possible barriers before the implementation of a telemedicine intervention in Switzerland. METHODS: The method used was a scoping review, following the PRISMA-ScR reporting guidelines. We searched the PubMed, Ovid SP, Medline, Cochrane and Scopus databases for relevant reports. Charting and analyses of the data were done by a single researcher. A total of 520 records were screened and assessed for eligibility. Finally, 27 studies and 4 registry entries were included. Main reasons for exclusion were wrong population and intervention. RESULTS: The prevailing study type was the single-arm intervention study. Most studies originated from countries with geographic barriers to access. Feasibility was good in 69% of all studies. Good acceptability (84.1-100%) was confirmed in the majority of the studies. The needs of the patients or the healthcare professionals were directly addressed in only five (16%) studies. Three needs were consistently reported: communication, coordination and technical reliability. CONCLUSION: Despite a broad range of studies on telemedicine in palliative care, patients' needs are rarely addressed. Therefore, especially in countries such as Switzerland, a needs assessment is recommended before the implementation of a new telemedicine intervention, to guarantee high feasibility and acceptability.
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COVID-19 , Telemedicina , COVID-19/terapia , Estudos de Viabilidade , Humanos , Cuidados Paliativos/métodos , Pandemias , Reprodutibilidade dos TestesRESUMO
PURPOSE: To develop and validate an electronic poor outcome screening (ePOS) score to identify critically ill patients with potentially unmet palliative care (PC) needs at 48 hours after ICU admission. MATERIALS AND METHODS: Retrospective single-centre cohort study of 1'772 critically ill adult patients admitted to a tertiary academic ICU in Switzerland between 2017 and 2018. We used data available from electronic health records (EHR) in the first 48 hours and least absolute shrinkage and selection operator (LASSO) logistic regression to develop a prediction model and generate a score to predict the risk of all cause 6-month mortality. RESULTS: Within 6 months of the ICU admission, 598 patients (33.7%) had died. At a cut-off of 20 points, the ePOS score (range 0-46 points) had a sensitivity of 0.81 (95% CI 0.78 to 0.84) and a specificity of 0.51 (0.48 to 0.54) for predicting 6-month mortality and showed good discriminatory performance (AUROC 0.72, 0.67 to 0.77). CONCLUSIONS: The ePOS score can easily be implemented in EHR and can be used for automated screening and stratification of ICU patients, pinpointing those in whom a comprehensive PC assessment should be performed. However, it should not replace clinical judgement.
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Estado Terminal , Unidades de Terapia Intensiva , Adulto , Estudos de Coortes , Eletrônica , Mortalidade Hospitalar , Humanos , Cuidados Paliativos , Estudos RetrospectivosRESUMO
BACKGROUND: The public's view of palliative care often involves its potential to improve of quality-of-life as well as its use as a last resource prior to death. OBJECTIVE: To obtain an idea of the image of palliative care held by the public in the German-speaking part of Switzerland, the authors sought to understand (1) the perceptions of palliative care and the (2) elements important when thinking about their own end of life. METHODS AND SAMPLE: A qualitative design with an inductive reasoning approach based on Mayring (2014) was chosen. Visitors at an exhibition about palliative care in six locations provided hand-written answers on provided cards to two statements: (1) if I hear the term 'Palliative Care' I think of and (2) when thinking about my own end of life, the following is important to me . RESULTS: Answers of 199 visitors (mean age 52, mostly in a good/very good health status) were analysed. In response to hearing the term palliative care, six areas were categorized: (1) the main focus; (2) ways of providing palliative care; (3) the best timing; (4) places where palliative care is provided; (5) who is seen as provider and (6) outcomes of palliative care. Five categories to the statement about their own end-of-life were identified: (1) the ability to look back on a fulfilled life and being satisfied; (2) maintaining trusting relationships until the end; (3) organizing affairs and having everything settled; (4) having their family being cared for and (5) relief of suffering with the support of knowledgeable people. CONCLUSION: Palliative care was mostly associated with positive terms acknowledging an interprofessional approach. Maintaining one's dignity as well as dying without suffering pointed at the persisting stigma that palliative care is mainly limited to end-of-life care. The results may help healthcare professionals to better understand how the public view palliative care.
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Palliative care focuses on symptom management, discussion of treatment and care decisions, network organization, and support of the family. As part of the advance care planning (ACP) process, staff nurses in the acute care setting are often involved in all of the above areas. It is yet unclear what nurses' roles and responsibilities are and what skills are needed in the ACP process. The themes that staff nurses and advanced practice registered nurses (APRNs) discuss in relationship to ACP are manifold. This scoping review demonstrates that staff nurses' core role is advocating for the wishes and values of patients with any life-limiting disease. Staff nurses also serve as facilitators, educators, and advocates to help start ACP conversations and ease patients' transitions between settings based on well-discussed decisions. To be able to engage in ACP discussions, APRNs must have excellent communication skills. Continuous training to improve these skills is mandatory. In the future, clarifying the contribution of staff nurses and APRNs in the ACP process in relation to other members of the interprofessional team can lay the groundwork for improved interprofessional collaboration.
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Planejamento Antecipado de Cuidados , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Enfermeiras e Enfermeiros , Cuidados Paliativos , Comunicação , HumanosRESUMO
Delirium is a frequent condition in patients in a palliative care situation and most often associated with substantial burden or even danger for the persons concerned as well as caregivers and health-care-professionals. Despite the lack of randomized-controlled-trials (RCTs) benzodiazepines and neuroleptic agents are used extensively in palliative care for the pharmacological management of delirium. A focused review for RCTs assessing pharmacotherapy with benzodiazepines and neuroleptics for the treatment of delirium in patients treated in a palliative care or hospice setting published in 2017 was performed in PubMed. A narrative summary of the findings of the RCTs and practical recommendation are presented. Of 42 publications, two RCTs could be included. One trial assessed the use of lorazepam (in addition to haloperidol) in case of agitation, the other placebo or risperidone or haloperidol in delirious palliative care patients. Neither risperidone nor haloperidol were superior compared to placebo, but were associated with higher mortality and morbidity. Lorazepam (along with haloperidol) reduced agitation in patients with delirium compared to placebo (along with haloperidol), but was unable to reduce the severity and incidence of delirium. It is of importance to note that psychopharmacotherapy with antipsychotics is mainly indicated for the hyperactive form of delirium and psychotic symptoms (e.g., delusions or hallucinations) in the hyper- and hypoactive delirium. Severe agitation and aggressivity can be an indication for neuroleptics, when non-pharmacological interventions fail, whereas the use of benzodiazepines has to be limited to critical situations where neuroleptics cannot be applied and cases of delirium due to alcohol withdrawal. Both substances can aggravate, precipitate or mask delirium, result adverse events with substantial distress or unfavorable survival outcomes for the patients. Thus, they should only be used in severely symptomatic patients and the duration of the medication has to be limited in time. When delirium symptoms decay the psychopharmacotherapy has to be tapered. More important than psychopharmacotherapy, the thorough investigation and treatment of potentially reversible causes of delirium (e.g., pharmacotherapy, infection) and the routine identification of patients at risk for delirium along with prophylactic measures are essential. The recently published landmarks RCTs provide moderate evidence to adopt recommendations from other medical specialties (i.e., intensive care, geriatrics) to the field of palliative care.
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Antipsicóticos/uso terapêutico , Benzodiazepinas/uso terapêutico , Delírio/tratamento farmacológico , Cuidados Paliativos/métodos , Idoso , Feminino , Humanos , Masculino , Ensaios Clínicos Controlados Aleatórios como Assunto , Resultado do TratamentoRESUMO
Anticipatory planning for end of life requires a common language for discussion among patients, families, and professionals. Studies show that early Palliative Care (PC) interventions based on a problem-oriented approach can improve quality of life, support decision-making, and optimize the timing of medical treatment and transition to hospice services. The aim of this quality-improvement project was to develop a pragmatic structure meeting all clinical settings and populations needs. Based on the Medical Research Council (MRC) framework, a literature review identifying approaches commonly used in PC was performed. In addition, more than 500 hospital-based interprofessional consultations were analyzed. Identified themes were structured and compared to published approaches. We evaluated the clinical usefulness of this structure with an online survey among professionals. The emerged 'SENS'-structure stands for: Symptoms patients suffer from; End-of-life decisions; Network around the patient delivering care; and Support for the carer. Evaluation among professionals has confirmed that the 'SENS'-structure covers all relevant areas for anticipatory planning in PC. 'SENS' is useful in guiding patient-centered PC conversations and pragmatic anticipatory planning, alongside the regular diagnosis-triggered approach in various settings. Following this approach, 'SENS' may facilitate systematic integration of PC in clinical practice. Depending on clearly defined outcomes, this needs to be confirmed by future randomized controlled studies.
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PURPOSE: To offer evidence-based clinical recommendations concerning prognosis in advanced cancer patients. METHODS: A Working Group of the Research Network of the European Association for Palliative Care identified clinically significant topics, reviewed the studies, and assigned the level of evidence. A formal meta-analysis was not feasible because of the heterogeneity of published studies and the lack of minimal standards in reporting results. A systematic electronic literature search within the main available medical literature databases was performed for each of the following four areas identified: clinical prediction of survival (CPS), biologic factors, clinical signs and symptoms and psychosocial variables, and prognostic scores. Only studies on patients with advanced cancer and survival < or = 90 days were included. RESULTS: A total of 38 studies were evaluated. Level A evidence-based recommendations of prognostic correlation could be formulated for CPS (albeit with a series of limitations of which clinicians must be aware) and prognostic scores. Recommendations on the use of other prognostic factors, such as performance status, symptoms associated with cancer anorexia-cachexia syndrome (weight loss, anorexia, dysphagia, and xerostomia), dyspnea, delirium, and some biologic factors (leukocytosis, lymphocytopenia, and C-reactive protein), reached level B. CONCLUSION: Prognostication of life expectancy is a significant clinical commitment for clinicians involved in oncology and palliative care. More accurate prognostication is feasible and can be achieved by combining clinical experience and evidence from the literature. Using and communicating prognostic information should be part of a multidisciplinary palliative care approach.
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Medicina Baseada em Evidências , Expectativa de Vida , Neoplasias/patologia , Neoplasias/terapia , Guias de Prática Clínica como Assunto , Assistência Terminal , Biomarcadores/análise , Humanos , Saúde Mental , Neoplasias/complicações , PrognósticoRESUMO
PURPOSE: To evaluate the predictive accuracy of the Palliative Prognostic (PaP) score in patients with advanced cancer under the care of an oncologist. PATIENTS AND METHODS: The PaP score was calculated in 100 consecutive patients with advanced cancer hospitalized under the care of a medical or radiation oncologist at a university teaching hospital in Australia. The attending oncologist predicted the survival duration for the purpose of the scoring. The positive predictive value of the PaP score was evaluated. Survival analysis was performed to compare the survival of the three prognostic groups. RESULTS: Assessable survival data were available for 98 patients. The overall median survival was 12 weeks (interquartile range, 7 to 25 weeks). The PaP score divided the heterogeneous patient sample into three isoprognostic groups related to the chance of surviving 1 month, with 64 patients in group A (> 70% chance), 32 patients in group B (30% to 70% chance), and four patients in group C (< 30% chance). The estimated median survival of the three groups was 17 weeks (95% CI, 12 to 26 weeks), 7 weeks (95% CI, 4 to 12 weeks), and less than 1 week (95% CI, < 1 to 3 weeks), respectively. These survival differences were highly significant (log-rank test of trend, chi1(2) = 25.65; P < .0001). The 1-month survival of the groups was 97%, 59%, and 25%, respectively. CONCLUSION: When oncologists' survival estimates are used, the PaP score is able to identify accurately three isoprognostic patient groups, irrespective of the cancer type. The PaP score may help reduce the uncertainty of formulating a prognosis in patients with advanced cancer.
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Avaliação de Estado de Karnofsky , Neoplasias/diagnóstico , Neoplasias/mortalidade , Cuidados Paliativos/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Hospitalização , Hospitais Universitários , Humanos , Masculino , Oncologia/métodos , Pessoa de Meia-Idade , Neoplasias/terapia , Valor Preditivo dos Testes , Prognóstico , Sensibilidade e Especificidade , Índice de Gravidade de Doença , Análise de Sobrevida , Assistência Terminal/métodos , Doente Terminal , Fatores de TempoAssuntos
Cuidados Paliativos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , PrognósticoRESUMO
PURPOSE OF REVIEW: In clinical practice, assessment and adequate treatment of depression in the last month of life remain a difficult task. Although assessment instruments and criteria for depression are available for use in the palliative care population, few have been applied for the last weeks of life. The same is true for clinical management including antidepressants. RECENT FINDINGS: Assessment aids such as Hospital Anxiety and Depression Scale or Hamilton Depression Rating Scale are available and validated for the last days or weeks of life, but its clinical impact remains unclear. The wish to die may symbolize more the acceptance that life comes to an end instead of reflecting a depressive or anxiety disorder. Communication about concrete preparation for death, life completion discussions, expressing religious struggle and giving back a sense of coherence seem to be promising non-pharmacological strategies and may lead to improved social function and better management of physical symptoms. Good news for researchers comes from a recent study highlighting the fact that psychosocial research seems to be of more potential benefit than burden for the patient. SUMMARY: No recent literature can be found on the pharmacological management of depression in the last weeks of life. Few studies demonstrate the usefulness of concrete end of life preparation discussions that underpins the importance and impact of best carer-patient relationship during this last phase of life. A Cochrane protocol on antidepressants in severely physically ill patients has been undertaken recently to highlight this important clinical question, but results may reflect the lack of studies focusing on the last weeks or days of life.