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Building integrated Palliative Care Programs and Services

Authors:
  • Catalan Institute of Oncology / University of Vic / Barcelona
  • Worldwide Hospice Palliative Care Alliance

Abstract and Figures

A comprehensive guide to help in building integrated palliative care programs and services with a public health perspective, written by most of the members of the Technical Advisory Group ant the WHO HQ.
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... In the meantime, Palliative Care (PC) stands out as a technical-scientific framework needed to guide care plans. PCs present an approach that aims to prevent and alleviate suffering and to promote dignity, better quality of life and adaptation to progressive diseases and/or conditions for adults and children living with serious health problems, acute or chronic, complex and/or life threatening, as well as to their families (Gómez-Batiste & Connor, 2017). It is based on the concept of Total Pain by Cicely Saunders (Miccinesi et al., 2020) -which understands that not only the physical components of pain must be considered, but also the social, psychological and spiritual dimensions. ...
... The core areas of Palliative Care seek to go far beyond the relief of physical symptoms, but to integrate the physical, psychological, social and spiritual aspects of care practices, enabling the person to prepare for their death in such a complete, complex and constructive as possible, which presupposes integration between the people involved (patient/family/team), endowed with an adequate communication process for the control of symptoms of physical, psychological, social and spiritual pain -Total Pain (Miccinesi et al., 2020) -and overcoming major challenges of teamwork, such as managing conflicts in a constructive and creative way, in favor of a common good: respect for the autonomy and well-being of the person in Palliative Care (Gómez-Batiste & Connor, 2017). ...
... From the concept of Total Pain, it is possible to understand that it is not only the physical components of pain that must be considered, but also the emotional, social and spiritual dimensions. Currently, this concept is expanded to any symptoms, that is, it is essential to highlight the individual and subjective character of symptoms, as well as the interaction between biological, sensory, affective, cognitive, behavioral, social and cultural factors in determining, interpretation and expression of the symptoms presented (Gómez-Batiste & Connor, 2017). ...
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Resumo Introdução A Realidade Virtual se apresenta como ferramenta promissora para aprimoramento de tecnologias em saúde e potencialização de intervenções para a melhora da funcionalidade e qualidade de vida de pacientes e familiares que enfrentam doenças e/ou condições progressivas ameaçadoras da vida. Objetivo Este ensaio discute o papel promissor da Realidade Virtual Imersiva na reabilitação em Cuidados Paliativos e propõe o conceito de Reabilitação Total como possibilidade para ampliação da concepção de reabilitação atual. Método Apresentamos reflexões baseadas na teoria de Dor Total, própria dos Cuidados Paliativos, e a inserção das Novas Tecnologias na saúde, especialmente no âmbito da reabilitação, por meio de documentos baseados na linha reflexiva que os autores pretendem submeter à apreciação e ao debate público. Resultados É importante e promissor o papel da Realidade Virtual Imersiva em intervenções de saúde, bem como a proposta conceitual de ampliação do conceito e compreensão de Reabilitação, cunhando o termo Reabilitação Total. Além disso, fomentou-se o processo reflexivo de debate sobre as possibilidades terapêuticas e suas inovações. Conclusão A partir da Reabilitação Total, inovações relativas ao cuidado em saúde, sejam tecnológicas e/ou das práticas clínicas, podem ser aprimoradas e disponibilizadas através de intervenções em ambientes físicos e/ou virtuais, tendo como premissas para os processos de reabilitação a funcionalidade global e dignidade da pessoa humana, com ações que envolvam as dimensões física, social, psicológica e espiritual, tal como apresentado pelo conceito de Dor Total.
... Palliative care means "improving the quality of life of patients and their families in the face of drawbacks associated with life-threatening diseases, through the prevention and relief of suffering, based on early identification and proper management and treatment of pain other physical, psychosocial, and spiritual problems" [1][2][3]. ...
... However, nowadays, the inclusion of a palliative care approach is considered in the attention of any person with a chronic and degenerative disease. It is emphasized in early-onset diseases to help patients and families maintain a better quality of life [1,4,5]. ...
... The philosophy of palliative care is supported on the idea of maintaining the best quality of life for people affected by degenerative diseases and especially in the advanced stages of the disease [1], mainly since the 1960s, when Cicely Saunders began to be interested in these people's care and gave rise to the 'hospice' movement [6]. ...
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(1) Background: Nurses can find people with advanced diseases or in their last days of life during their professional careers and in many different care settings. For this reason, they need to have at least a basic level of palliative care education since they are the professional cohort treating these patients in a very close way. This research aims to determine the level of knowledge in palliative care of Spanish nurses and establish any possible difference based on their experience and training in palliative care. (2) Methods: A cross-sectional design using survey methods (distributed an online questionnaire) aimed at Spanish registered nurses. A validated questionnaire (PCQN-SV) was used to determine the level of knowledge in palliative care; information on some variables to characterize the population was also collected (experience and education in palliative care, years of professional experience, academic level, and others). Uni and bivariate descriptive analyses were performed. A binary logistic regression model was also developed to identify those variables that influenced obtaining results higher than the population's average. (3) Results: Spanish nurses have a medium-low level of knowledge in palliative care, higher in those who have previous experience or education in this area. Statistically significant differences were also found according to the area in which their caring activity was developed. (4) Conclusions: It is necessary to implement strategies for the basic training of nursing professionals in palliative care to offer quality care to people in advanced stages of illnesses or at the end of their lives.
... Sendo assim, um instrumento que possibilite a avaliação funcional e a identificação de pacientes em CP direciona uma melhor qualidade de vida a este público, tornando-se uma alternativa de avaliação quando outros recursos não estivem disponíveis ou não forem de conhecimento dos profissionais (Gómez-Batiste et al., 2017), O instrumento utilizado na pesquisa, "Supportive and Palliative Care Indicators Tool" (SPICT), direciona a equipe para identificação de pacientes com elegibilidade a CP, é fácil de usar, é completo e oferece suporte na identificação de necessidades reais dos pacientes e seu uso é aprovado para ser utilizado em hospitais (Highet et al., 2014). ...
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Resumo Objetivo: identificar e caracterizar os idosos internados em um setor de clínica médica de um hospital de clínicas, quanto a possuir critério elegível e ter sido indicado a cuidado paliativo. Método: estudo retrospectivo, descritivo e quantitativo. Os dados foram coletados por meio da investigação de prontuários eletrônicos de todos os idosos internados no período de janeiro a dezembro de 2019, em um setor de clínica médica e o preenchimento do questionário Supportive and palliative care indications tool (SPICT). Foi realizada análise descritiva para caracterização da amostra e Teste Exato de Fisher para avaliar associação entre duas variáveis categóricas. Resultados: foram avaliados 379 prontuários, destes, obteve-se que 146 (38,5%) idosos eram elegíveis a cuidados paliativos. Desta amostra, predominaram homens (63%), com média de idade 73,9 anos. O diagnóstico mais frequente foi a doença pulmonar obstrutiva crônica (17,8%) e a doença de base foi a hipertensão arterial sistêmica (67,8%). Dos 146 idosos elegíveis a cuidados paliativos, apenas 50 realmente receberam a indicação por parte da equipe de saúde e desta amostra, 68% teve como desfecho o óbito. Conclusão: menos da metade dos pacientes idosos elegíveis a cuidados paliativos realmente recebeu a indicação. É imprescindível que os profissionais tenham conhecimento a respeito dos princípios e indicação de cuidados paliativos, para assim, planejar e implementar uma assistência adequada e então proporcionar uma melhor qualidade de vida a este perfil de pacientes. Palavras-chave: Saúde do idoso; Cuidados paliativos; Atenção terciária à saúde; Doença crônica. Abstract Objective: to identify and characterize the elderly hospitalized in a medical clinic sector of a hospital of clinics, in terms of having eligible criteria and having been indicated for palliative care. Method: retrospective, descriptive and quantitative study. Data were collected through the investigation of electronic medical records of all elderly hospitalized from January to December 2019, in a medical clinic sector and filling out the Supportive and palliative care indications tool (SPICT) questionnaire. Descriptive analysis was performed to characterize the sample and Fisher's Exact Test to assess the association between two categorical variables. Results: 379 medical records were evaluated, and of these, it was found that 146 (38.5%) elderly were eligible for palliative care. Of this sample, men predominated (63%), with a mean age of 73.9 years. The most frequent diagnosis was chronic obstructive pulmonary disease (17.8%) and the underlying disease was systemic arterial hypertension (67.8%). Of the 146 elderly eligible for palliative care, only 50 actually received the indication by the health team and from this sample, 68% had death as an outcome. Conclusion: less than half of elderly patients eligible for palliative care actually received the indication. It is essential that professionals have knowledge about the principles and indication of palliative care, in order to plan and implement adequate care and then provide a better quality of life for this profile of patients. Keywords: Health of the elderly; Palliative care; Tertiary healthcare; Chronic disease.
... This type of care was initially used for patients with cancer and HIV/AIDS. Afterwards, dementia, Alzheimer's disease, and other cognitive disorders were also added to the groups requiring palliative care (Batiste and Connor, 2017). ...
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Introduction: The needs of Alzheimer's patients are very complex and diverse and many of them are considered unmet needs. Understanding and responding to the unmet and complex needs of Alzheimer's patients can affect the quality of care. Therefore, the present study aimed to explain the perception of formal and informal caregivers of the unmet needs of Iranian Alzheimer's patients. Methods: The present qualitative study employed a Directed Content Analysis approach and was conducted in Iran in 2020. This research was done through in-depth and semi-structured interviews with 19 qualified caregivers enrolled (11 informal caregivers and 8 formal caregivers) with the mean age of 46.05 ± 10.98 years in a purposive sampling method. Interviews continued until data saturation. Data analysis was performed simultaneously with data collection. After recording and transcribing, the data were analyzed using the Elo and Kyngas method based on the National Consensus Project framework (NCP). Data management was done with MAXQDA software. In order to achieve the accuracy and validity of the study, the criteria presented by Lincoln and Guba Credibility, Dependability, Confirmability, and Transformability were considered and used. Results: The mean age of participants was 46.05 ± 10.98. Participants in this study acknowledged that Alzheimer's patients need comprehensive needs management with a holistic approach to increase quality of life. This theme based on the NCP framework consists of seven main categories including “Structure and processes of care,” “Physical aspects of care,” “Psychological and psychiatric aspects of care,” “Social aspects of care,” “Cultural aspects of care,” “Care of the patient nearing the end of life,” and “Ethical and legal aspects of care” with 16 subcategories. Conclusion: The findings of this study provide a deep understanding of the unmet needs of Alzheimer's patients in Iran. Identifying the unmet needs of patients can pave the way for the treatment team to provide effective solutions to meet the needs and empower caregivers to provide comprehensive care for patients.
Article
In most countries of the world, palliative care is an integral part of quality medical care, which includes comprehensive medical, social, psychological, and spiritual support for critically ill patients and their relatives. According to the WHO, every year about 20 million people worldwide need palliative care at the end of their lives. There are many more who need palliative care until the last year of their lives. Thus, the total number of people who need palliative care annually is about 40 million. It is estimated that of the 20 million people in need of end-of-life palliative care, 78% live in low- and middle-income countries; about 67% are elderly and about 6% are children. However, only 14% of people who need end-of-life palliative care receive it. Palliative care considers the principle of respect for patients' decisions and aims to provide practical support to their family members during illness and in the event of a patient's death to overcome grief over the loss of a loved one. The WHO's global strategy for health care, based on human approach and integration, is to strengthen palliative care programs for patients with various diseases. Despite the fact that some steps have already been taken in Ukraine towards the development of palliative care, there are still some problems: lack of qualified medical staff; lack of relationships between primary and secondary, tertiary care and coordination; imperfect system of informing medical workers about ensuring the right to anesthesia for seriously ill patients; lack of a sufficient number of pharmacies licensed to operate controlled medicines; lack of interagency programs in the field of palliative care.
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Objective To estimate the capacity of European countries to integrate palliative care (PC) into their health systems through PC service provision for patients of all ages, with different care needs and diseases, in various settings and by a range of providers. Methods Secondary analysis of survey data from 51 countries with 22 indicators explored the integration of available PC resources for children, for patients of all ages, at the primary care level, for oncology and cardiac patients, and in long-term care facilities. We also measured volunteer participation. Results were quantified, converted into weighted subscores by area and combined into a single ‘Integration Capacity Score (ICS)’ for each country. Results Thirty-eight countries reported 543 specialised paediatric PC services. One-third of all surveyed countries reported 20% or more of patients with PC needs at the primary care level. Twenty-four countries have a total of 155 designated centres that integrate oncology and PC. Eight countries were pioneering cardiology services that integrate PC. Eight reported a volunteer workforce of over 1000 and 12 had policies regulating PC provision and interventions in long-term care facilities. Across all indicators, 39 countries (76%) score from low to very low integration capacity, 8 (16%) score at an intermediate level, and 4 (8%; the Netherlands, UK, Germany and Switzerland) report a high-level integration of PC into their health systems. Conclusion Variable progress according to these indicators shows that most European countries are still in the process of integrating PC into their health systems.
Article
Purpose: There are no guidelines or consensus statements on the terms to be used when discussing withholding of treatment for patients in acute geriatric care units and who have not received palliative care. The objective of the present study was to analyze the terms used in medical records to refer to the withholding of treatment for patients who died in an acute geriatric care unit and did not receive palliative care. Methods: We conducted an ambispective multicentre cohort study based on the DAMAGE study. Data on 53 patients who died in the acute geriatric care unit and who had not received palliative care were extracted from medical records. The verbatims referring to the withholding of treatment were analyzed in terms of keywords and then key concepts, as defined by several reviewers in a consensus-based approach. Results: The mean age of the patients was 86.4 years, 34.1% were male. Terms referring to the withholding of treatment were found for 25 of the 53 patients (47.2%). Most of the decisions on the withholding of treatment were recorded in the week following admission to the acute geriatric care unit. Our analysis of the terms identified 11 key concepts: treatment limitation, no resuscitation, withholding diagnostic procedures, justification of care, ethical considerations, disease progression, uncertainty, the patient's wishes, the family's wishes, patient's comfort, and collegiality. The terms used to describe key concepts varied markedly from one physician to another. Conclusion: Decisions about the withholding of treatment are frequently noted in the medical records of patients who die in the acute geriatric care unit without having received palliative care. The broad variety of key concepts and differences in the choice of words highlight the need for standardized terms.
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Background Previous research unambiguously establishes the importance of knowledge and education about opioids and pain management in medical care. This article aimed at describing the perception of the general public on the uses and the risks of morphine in palliative care in an Ecuadorian sample, where training and access to those services is limited. Methods We used an online recruited sample of 257 participants for this cross-sectional descriptive study. Participants responded to an online self-report survey regarding morphine’s effects and its relationship with addiction and death in a palliative care context. Results Analyses indicate that there is a lack of understanding about the effectiveness of morphine and that, overall, participants did not associate morphine with death and dying. Results also show that people in health-related occupations did not differ from the general public in beliefs about the addiction and the effectiveness of morphine. However, occupation and education effects were noted for several other items, as well as whether the participants had direct experiences with palliative care as either a patient or a caregiver. Conclusions There is still misinformation about opioids such as morphine in the general public and health professionals in Ecuador. Although personal experiences with pain control and palliative care are linked to better knowledge about opioids, education is still necessary to overcome the myths around them. Future research could address the found misconceptions to increase health literacy through education policies and interventions.
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Background: Understanding the need for palliative care is essential in planning services. Aim: To refine existing methods of estimating population-based need for palliative care and to compare these methods to better inform their use. Design: (1) Refinement of existing population-based methods, based on the views of an expert panel, and (2) application/comparison of existing and refined approaches in an example dataset. Existing methods vary in approach and in data sources. (a) Higginson used cause of death/symptom prevalence, and using pain prevalence, estimates that 60.28% (95% confidence interval = 60.20%-60.36%) of all deaths need palliative care, (b) Rosenwax used the International Statistical Classification of Diseases and Related Health Problems-10th Revision (ICD-10) causes of death/hospital-use data, and estimates that 37.01% (95% confidence interval = 36.94%-37.07%) to 96.61% (95% confidence interval = 96.58%-96.64%) of deaths need palliative care, and (c) Gómez-Batiste used percentage of deaths plus chronic disease data, and estimates that 75% of deaths need palliative care. Setting/participants: All deaths in England, January 2006-December 2008, using linked mortality and hospital episode data. Results: Expert panel review identified changing practice (e.g. extension of palliative care to more non-cancer conditions), changing patterns of hospital/home care and multiple, rather than single, causes of death as important. We therefore refined methods (using updated ICD-10 causes of death, underlying/contributory causes, and hospital use) to estimate a minimum of 63.03% (95% confidence interval = 62.95%-63.11%) of all deaths needing palliative care, with lower and upper mid-range estimates between 69.10% (95% confidence interval = 69.02%-69.17%) and 81.87% (95% confidence interval = 81.81%-81.93%). Conclusions: Death registration data using both underlying and contributory causes can give reliable estimates of the population-based need for palliative care, without needing symptom or hospital activity data. In high-income countries, 69%-82% of those who die need palliative care.
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A Consensus Conference sponsored by the Archstone Foundation of Long Beach, California, was held February 17-18, 2009, in Pasadena, California. The Conference was based on the belief that spiritual care is a fundamental component of quality palliative care. This document and the conference recommendations it includes builds upon prior literature, the National Consensus Project Guidelines, and the National Quality Forum Preferred Practices and Conference proceedings.
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