OBJECTIVE: The objective of this scoping review is to examine and map interventions of palliative rehabilitation that are implemented and evaluated in palliative care.
INTRODUCTION: Palliative rehabilitation is defined as the process of helping an individual with a progressive, frequently advanced and/or incurable disease reach their physical, psychological, and social potential consistent with physiological and environmental limitations and life preferences. Therefore, it is essential to examine and map interventions of palliative rehabilitation that are implemented and evaluated in palliative care.
INCLUSION CRITERIA: This scoping review will consider all studies that focus on qualified health care professionals working in palliative care who are caring for patients 18 years of age or older, and studies that focus on the concepts of palliative rehabilitation interventions. This scoping review will consider all palliative rehabilitation interventions implemented and evaluated in the context of palliative care.
METHODS: The search strategy aims to find published and unpublished studies. The databases to be searched will include: CINAHL Complete, PubMed, Scopus, SciELO, Cochrane Central Register of Controlled Trials, and PEDro. The search for unpublished studies will include: DART-Europe, OpenGrey, and RCAAP. Studies published in English, Spanish, and Portuguese, and studies that were carried out between 2009 and 2019 will be considered for inclusion. Retrieved papers will be screened for inclusion by two reviewers. Data will be extracted and presented in tabular form and a narrative summary that aligns with the review's objective. Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.
With perpetual research, management refinement and increasing survivorship, cancer care is steadily evolving into a chronic disease model. Rehabilitation Physicians are quite accustomed to managing chronic conditions, yet, in Australia, Cancer Rehabilitation remains under-explored. Palliative Care Physicians, along with Rehabilitationists, are true Generalists, who focus on the whole patient and their social context, in addition to the diseased organ system. This, together with Palliative Care's expertise in managing the panoply of troubling symptoms that beset patients with malignancy, makes them natural allies in the comprehensive management of this patient group from the moment of diagnosis. This paper will explore the under-recognized and under-utilized parallels and synergies between the two specialties as well as identifying potential challenges and areas for future growth.
Context: In end-of-life care, rehabilitation for cancer patients is considered to be an important means for improving patients’ quality of death and dying (QODD).
Objectives: To determine whether the provision of rehabilitation for cancer patients in palliative care units is associated with the achievement of a good death.
Methods: This study involved a cross-sectional, anonymous, self-report questionnaire survey of families of cancer patients who died in palliative care units in Japan. We evaluated the Good Death Inventory (GDI) short version on a 7-point scale. A logistic regression model was used to calculate the propensity score. Covariates included in this model were survey year, patients’ characteristics, and families’ characteristics. The associations between rehabilitation and GDI were tested using trend tests after propensity score matching adjustment.
Results: Of the 1,965 family caregivers who received the questionnaires, available data was obtained from 1,008 respondents (51.2%). Among them, 285 (28.2%) cases received rehabilitation in palliative care units. There was no difference in total GDI score between the groups with and without rehabilitation. In exploratory analyses, patients receiving rehabilitation were significantly more likely to feel “maintaining hope and pleasure” (mean = 4.50 [standard error = 0.10] vs. 4.05 [0.11], respectively; effect size (ES)= 0.31; p-value = 0.003), “good relationships with medical staff,” (5.67 [0.07] vs. 5.43 [0.09], respectively; ES= 0.22; p-value = 0.035) and “being respected as an individual” (6.08 [0.06] vs. 5.90 [0.07], respectively; ES=0.19;p-value = 0.049) compared with patients not receiving rehabilitation.
Conclusion: Rehabilitation in palliative care units may contribute to several domains of QODD, particularly “maintaining hope and pleasure”. Further research is needed to investigate whether palliative rehabilitation contribute to the achievement of a good death.
In the last six months of life, 30% of Medicare beneficiaries use the skilled nursing facility (SNF) benefit for post-acute care after a hospital stay. Frequently, the circumstances that indicate a need for SNF care are the same as those of a worsening illness trajectory such as functional decline and falls, unstable health conditions, and pain and other symptoms. The following case example and narrative discussion describes the national implications of this issue and the need for Medicare policy changes that allow for concurrent rehabilitative care and hospice services.
OBJECTIVES: There has been a recent drive to embed rehabilitation within palliative care. The concept of rehabilitative palliative care has been advocated to help patients preserve function and independence, through greater patient enablement and self-management. Such an approach requires engagement from all members of the palliative care team. There is a lack of understanding of such viewpoints. The objective of this research was to explore hospice-based palliative care professionals' understanding and perceptions of rehabilitation.
METHODS: Qualitative semi-structured interviews were conducted. Eighteen hospice-based healthcare professionals were recruited from a hospice in central Scotland. Interviews were audio-recorded, transcribed and thematically analysed.
RESULTS: Overall, participants clearly articulated the underlying values and benefits of rehabilitative palliative care. Emphasis was placed on ensuring that rehabilitation was appropriately tailored to each individual patient. There was more ambiguity regarding the pragmatic implementation of rehabilitative palliative care, with a number of barriers and facilitators identified.
CONCLUSIONS: The findings suggest that hospice-based palliative care professionals would be receptive to further implementation of rehabilitative palliative care. A lack of conceptual clarity among palliative care professionals may be a barrier to the effective implementation of rehabilitative palliative care. At an organisational level, this would require clarification of the approach, and additional training involving all members of the multidisciplinary team.
Physical medicine and rehabilitation (PM&R) is a specialty of medicine focused on optimizing function and quality of life for individuals with physical impairments, injuries, or disabling illnesses. Given the sometimes acute nature of the loss of function and even loss of independence, there are significant palliative care (PC) needs within patients seen by PM&R. This article, written by a team of PM&R and PC specialists, aims to help the PC team better understand the world of postacute care, expand their toolkit for treating musculoskeletal and neurological symptoms, improve prognostication for patients with brain and spinal cord injuries, and decide when patients may benefit from PM&R consultation and support. There is significant overlap between the populations treated by PM&R and PC. Better integration between these specialties will help patients to maintain independence as well as advance excellent patient-centered care.
STUDY DESIGN: Retrospective Analysis of a Quality Improvement Program.
PURPOSE: To describe the development, implementation, and outcomes of an inpatient rehabilitation-based Short Stay Family Training (SSFT) program for patients with life-limiting conditions.
BACKGROUND: Patients with terminal illnesses often have functional limitations that prohibit discharge home after hospitalization, but their condition limits their ability to participate in rehabilitation in an inpatient setting.
METHODS AND MEASURES: After a needs assessment, an interdisciplinary team developed an SSFT program to empower patients, caregivers, and family members by giving them the tools to be independent in caring for a patient with a life-limiting condition. Patients qualifying for the program were tracked in terms of acute care physical therapy and occupational therapy discharge recommendations, diagnosis, inpatient rehabilitation unit length of stay (LoS), caregiver involvement, and discharge location. Data were retrospectively analyzed from patients over the first 16 months.
RESULTS: Since program implementation, 30 patients and their family members participated in the program. Overall, these patients experienced decreased LoS, increased discharge to home, and increased palliative care involvement in the plan of care.
CONCLUSION: Short Stay Family Training is a viable alternative to traditional inpatient rehabilitation to allow patients with life-limiting conditions to discharge home safely with caregiver support.
The care philosophy of palliative care has demonstrated a rapid growth in the past several years (Dumanovsky et al., 2016). Home care agencies and hospital systems have collaborated on reducing excessive costs and focusing on the effective management of patients with late-stage chronic desease .
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This book examines the complex operations of the long-term care facility and offers critical skills to current and future long-term care administrators for delivering quality, cost-effective services. Comprehensive, yet concise, the Third Edition explores the necessary skills and tools for creating a person-centered environment. Topics covered include : how to adapt an existing nursing facility, the growing culture change movement, and the laws, regulations, and financing of the long-term care industry, as well as its organization and delivery. Finally, this book offers extensive coverage of the essential skills necessary to manage it all.
Origine : BDSP. Notice produite par IRDES R0x8nEsH. Diffusion soumise à autorisation
Introduction : Depuis la loi du 9 juin 1999, toute personne malade dont l’état le requiert a le droit d’accéder à des soins palliatifs (SP) et à un accompagnement (article L. 1110-9 du Code de la santé publique). Avec l’allongement de l’espérance de vie, une part importante des personnes âgées finissent leur vie à l’hôpital dans le cadre d’une maladie terminale suivant trois types de trajectoire.
Cet accroissement du nombre de personnes âgées concernées par les SP oblige à repenser le système de soins et de prise en charge. L’objectif de notre travail était d’évaluer l’activité de la prise en charge palliative des personnes âgées hospitalisées dans les Soins de suite et réadaptation gériatrique (SSRG) des Hospices civils de Lyon (HCL) afin d’identifier les besoins humains, stratégiques et économiques.
Méthode : Cette étude est une étude rétrospective effectuée sur les années 2014, 2015 et 2016. Nous avons effectué une analyse descriptive des données du Programme de médicalisation des systèmes d’information (PMSI) des patients de 70 ans et plus décédés aux HCL d’une part et des données Trajectoires des patients âgés de 70 ans et plus ayant fait l’objet d’une demande de SSRG pour prise en charge palliative d’autre part.
Résultats : Le nombre de décès augmente chaque année dans les services de médecine, tout comme le nombre de demandes de prise en charge palliative dans un SSRG.
Quel a été l'impact de la grande campagne nationale de communication sur les directives anticipées qui s'est déroulée en février - mars 2017 ? Le Centre national des soins palliatifs et de la fin de vie a mandaté plusieurs praticiens et experts pour faire le point sur cette question. Pendant un an le groupe de travail ainsi constitué a étudié ce qui se passe sur le terrain sur le sujet des directives anticipées. Cet ouvrage est le résultat de ses travaux et met en exergue les points positifs du dispositif des directives anticipées tout en n' occultant pas les dérives qui peuvent exister.
L’objectif de ce travail était de savoir si les patients décédés dans le service, leur entourage, et les soignants avaient plus peur de la mort à l’hôpital en Soins de Suite et Réadaptation qu’à domicile en Hospitalisation à Domicile.
Pour cela, une étude quantitative a été réalisée avec une enquête par questionnaire. Une étude comparative a été menée entre des patients âgés décédés dans un service de Soins de Suite et Réadaptation ayant des Lits Identifiés en Soins Palliatifs et des patients décédés pris en charge à domicile par l’Hospitalisation A Domicile.
BACKGROUND: Increasing numbers of people are living with incurable cancers. Symptoms, side effects, and treatment burdens impact on physical functioning, yet little is known about the impact on people's lives and how best to provide rehabilitation.
MATERIALS AND METHODS: A qualitative study employing a phenomenological approach explored the lived experience of incurable cancer. A purposive sample of six people participated in semi-structured interviews. The data were analysed thematically at a semantic level to identify the functional difficulties experienced by people living with incurable cancer, the meanings of those difficulties, and participants perceived rehabilitation needs.
RESULTS: People living with incurable cancer described cancer-related issues spanning all five domains of the International Classification of Functioning, Disability and Health (ICF). Although highly valued amongst study participants, rehabilitation services were difficult to access, poorly utilised, and referrals were sporadic and consequential; indicative of poor awareness of rehabilitation for people with incurable cancer amongst potential referrers.
DISCUSSION: Participants valued a change in terminology away from "palliative" towards more positive language in line with enhanced supportive care movements. Validated tools such as the Palliative Care Therapy Outcome Measure, which align with the ICF, would allow rehabilitation professionals to demonstrate maintenance or improvement in participation and wellbeing. Implications for Rehabilitation Incurable cancer leads to a fluctuating multifactorial disability. People living with incurable cancer can benefit from rehabilitation input throughout their illness. Offering flexible and varied rehabilitation options for people living with incurable cancer will increase physical and emotional well-being, function, and coping. Allied health professionals should take and create opportunities to promote rehabilitation for people living with incurable cancer and their services to other potentially referring healthcare professionals to increase understanding of benefits and utilisation of available services for people living with incurable cancer.
BACKGROUND: In Ethiopia, there were greater than 2000 adult and 200 pediatric cancer patients annually in 2010, but the estimated number of cancer patients were increasing. Oncologic rehabilitation treatment may result in improved physical and mental impairment. There is a paucity of information about rehabilitation service utilization among cancer patients in Ethiopia. Hence, the purpose of this study was to assess the rehabilitation service for cancer patient and associated factors at Black Lion hospital, Addis Ababa, Ethiopia.
METHODS: A hospital-based cross-sectional quantitative study was conducted from March to April 2014. Convenient sampling method was employed to recruit the study participants. Interviewer administered questionnaire was used to collect data. Data were entered into EPI data version 3.1 and exported to SPSS (16.0) software for analysis. Descriptive analysis, binary and multiple logistic regression were carried out. Significance association was interpreted using adjusted odds ratio at 95% confidence interval and p-value less than 0.05.
RESULT: A sample of 423 patients aged 18 years and older were involved in the study. Breast cancer (25%), colorectal cancer (20.6%), cervical cancer (14.7%), lymphoma (7.7%), lung (7.2%), leukemia (5.4%), kidney (3.6%) and prostate cancer (2.6%) were the common forms of cancer diagnosed at cancer unit of the Black Lion Hospital. Twenty six percent of cancer patients received rehabilitation service at least once. The main rehabilitation services given were nutritional and psychological support. Unavailability of supplies, lack of professionals and cost of service were among the barriers to receiving rehabilitation services.
CONCLUSION: Only a few cancer patients received cancer rehabilitation services. Increasing the knowledge of the professionals, stocking cancer units with necessary supplies, and other comprehensive programs are needed.
Ce mémoire décrit l’histoire d’un patient en état pauci-relationnel suite à un traumatisme crânien, depuis son entrée en soins de suite gériatriques et polyvalents jusqu’à son décès.
Il présente les problèmes posés par l’évaluation de la douleur et de la dépression/anxiété dans ce contexte, au moyen d’échelles d’hétéro-évaluation, mais aussi grâce aux observations de l’équipe médico-soignante, en relation avec la famille du patient.
Ce mémoire montre également comment les enseignements tirés de cette expérience clinique peuvent permettre à un médecin d’évoluer dans sa pratique quotidienne et d’aborder des questions éthiques.
The growing acceptance of palliative care has created opportunities to increase the use of rehabilitation services among populations with advanced disease, particularly those with cancer. Broader delivery has been impeded by the lack of a shared definition for palliative rehabilitation and a mismatch between patient needs and established rehabilitation service delivery models. We propose the definition that, in the advanced cancer population, palliative rehabilitation is function-directed care delivered in partnership with other clinical disciplines and aligned with the values of patients who have serious and often incurable illnesses in contexts marked by intense and dynamic symptoms, psychological stress, and medical morbidity to realize potentially time-limited goals. Although palliative rehabilitation is most often delivered by inpatient physical medicine and rehabilitation consultation/liaison services and by physical therapists in skilled nursing facilities, outcomes in these settings have received little scrutiny. In contrast, outpatient cancer rehabilitation programs have gained robust evidentiary support attesting to their benefits across diverse settings. Advancing palliative rehabilitation will require attention to historical barriers to the uptake of cancer rehabilitation services, which include the following: patient and referring physicians' expectation that effective cancer treatment will reverse disablement; breakdown of linear models of disablement due to presence of concurrent symptoms and psychological distress; tension between reflexive palliation and impairment-directed treatment; palliative clinicians' limited familiarity with manual interventions and rehabilitation services; and challenges in identifying receptive patients with the capacity to benefit from rehabilitation services. The effort to address these admittedly complex issues is warranted, as consideration of function in efforts to control symptoms and mood is vital to optimize patients' autonomy and quality of life. In addition, manual rehabilitation modalities are effective and drug sparing in the alleviation of adverse symptoms but are markedly underused. Realizing the potential synergism of integrating rehabilitation services in palliative care will require intensification of interdisciplinary dialogue.
BACKGROUND: Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied.
AIM: To explore palliative medicine physicians' attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units.
DESIGN: Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results.
PARTICIPANTS: Australian palliative medicine physicians working in inpatient palliative care units.
RESULTS: In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years' experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians' attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation.
CONCLUSION: A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.
Le service de Soins de Suite et de Réadaptation (SSR) palliatifs de la Clinique de la Toussaint à Strasbourg, dirigé par le docteur Véronique Vignon, accueille des patients atteints de maladie incurable. Dans ce documentaire, le réalisateur suit le quotidien des patients et celui des soignants dans leur accompagnement des personnes. Le docteur
Vignon définit l'accompagnement des personnes en fin de vie comme un "compagnonage". Elle aborde la souffrance spirituelle des patients : être à l'écoute de cette souffrance, est pour le docteur Vignon, "une façon nouvelle d'orienter le soin, d'ouvrir aux patients un chemin de vie jusqu'à la mort".