Le dossier contient les articles suivants : documentation, diffusion et recherche : des objectifs pour la revue ; les documentalistes comme partenaire dans la prise en charge des patients en fin de vie ; documentation et soins palliatifs : état des lieux de l’existant ; le thésaurus, un vocabulaire contrôlé pour parler le même langage ;
la recherche documentaire en soins palliatifs ; les médias sociaux : le monde est au bout de nos doigts ; la littérature scientifique française en soins palliatifs : cartographie bibliographique ; Palli@Doc : un point d’entrée unique à l’information en soins palliatifs ; la littérature de jeunesse au service de l’enfant hospitalisé ; se documenter, une ressource essentielle de praticien réflexif ; l’implication des documentalistes dans la recherche documentaire en soins palliatifs.
Pilou, un petit oiseau, vit une vie heureuse dans la ferme, entre ses parents et surtout Lisette, la star de la basse-cour ! Mais voilà, un jour, Lisette tombe malade et c'est toutes les petites habitudes du quotidien qui sont modifiées. C'est que la maladie de Lisette est "trop forte", le docteur ne peut plus la guérir. Face au chagrin de ses proches, Pilou se pose des questions sur la maladie et la mort. Heureusement, le médecin aide Lisette à ne pas souffrir et toute la basse-cour est là pour accompagner ses derniers jours. C'est un premier deuil pour Pilou, qui apprendra alors à se souvenir des bons moments pour emporter avec lui "la bonne humeur de Lisette".
Background: There is increasing interest in expanding palliative care (PC) services in the community-based outpatient oncology clinic. However, there is a paucity of data on the economics of integrating palliative medicine in this setting.
Objective: Provide scheduling and financial data on PC physician encounters, charges, and reimbursement in a community-based oncology practice.
Design: Retrospective review of billing data and scheduling software at a single practice.
Setting: A community-based oncology practice comprised of 25 medical oncologists in 8 suburban offices. PC physicians were integrated into the practice.
Measurement: Billed PC physician charges were analyzed on an annual basis for a four-year period from initial start-up of the PC clinic on September 2, 2014 to August 31, 2018.
Results: During year 1, a single PC physician saw 483 new patients and 827 follow-up encounters in four different office locations. In year 2, he saw 471 new patients and 1229 follow-up encounters. Actual collected revenue for those 1700 encounters was $228,168. In year 3, a second PC physician was added and services were expanded to a total of six offices. In year 4, two PC physicians billed for 832 new encounters and 2450 follow-up encounters for a total collected revenue of $454,356.
Conclusions: In a suburban community-based oncology practice, a PC physician can support a substantial part of his or her cost to an oncology practice.
The Edmonton Symptom Assessment System (Revised) (ESAS-r) contains 9 questions pertaining to symptoms/well-being. It is a standardized patient-reported assessment instrument, but inconsistently used in palliative care. Thus, a problem exists in knowledge translation regarding routine use of the ESAS-r in palliative practice. The objective was to understand clinicians' perspectives on the use of the ESAS-r in palliative care in hospitals and at home. Qualitative focus groups (n = 14 with 46 clinicians) and interviews (n = 24) elicited views regarding use of the ESAS-r in palliative practice. Interpretive description was used as a general approach to this qualitative analysis focused on understanding clinicians' views. Palliative clinicians presented multiple perspectives of the ESAS-r pertaining to their (1) underlying values, (2) disparate purposes, and (3) incommensurate responses toward use in daily practice. Benefits and challenges supported diversity within these themes, highlighting divergence among perspectives and complexity of integrating a standardized tool in patient care. Integration of the ESAS-r in palliative care requires (1) educational support for developing competence; (2) consideration of clinicians' existing, heterogeneous beliefs regarding the use of standardized assessment instruments; and (3) Consultation with multidisciplinary practitioners about optimal ways that ESAS-r results can be used in a person-centered approach to palliative care.
Le Colloque Yves Quenneville se tient aux deux ans dans différentes régions du Québec, le plus souvent sous l'égide d'une Maison ou d'une Unité hospitalière de soins palliatifs... Ce XVIIè colloque, organisé conjointement par la Maison Victor Gadbois de Beloeil et la Maison Michel Sarrazin de Québec, se tenait cette année du 25 au 27 septembre 2019.
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Les personnes hébergées en centre d'hébergement et de soins de longue durée (CHSLD) présentent des problèmes de santé complexes. Les infirmières qui oeuvrent dans ce milieu doivent désormais les accompagner dans les différentes transitions, allant de leur admission jusqu'aux soins palliatifs et de fin de vie. Les soins palliatifs offerts en CHSLD font face à une augmentation importante des taux de décès, ainsi qu'à la nécessité d'optimiser les compétences des infirmières pour répondre aux besoins des personnes qui y sont hébergées. La pratique réflexive (PR) en groupe apparaît comme une approche novatrice dont les résultats semblent positifs pour le développement des compétences professionnelles. A notre connaissance, aucune étude ne s'est intéressée à la PR dans un contexte de soins palliatifs en CHSLD. La présente étude vise donc à évaluer l'influence d'une intervention de PR en groupe sur la perception de compétence en soins palliatifs des infirmières (PCISP) en CHSLD.
BACKGROUND: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses. Children with cancer have experienced lower anxiety after MT. No studies have examined the effects of MT in pediatric oncology patients receiving palliative care.
OBJECTIVE: Conduct a MT intervention to determine intervention acceptability and initial effects on ratings of pain, worry reduction, and quality of life.
DESIGN: Pre-post single group pilot study.
SETTING/SUBJECTS: Eight children with cancer (age 10-17) and one of their parents were recruited from a palliative care service.
PROCEDURE/MEASUREMENTS: Baseline (one week prior to intervention): demographics, MT expectations, QOL, and pain measures. Intervention (one month): MT was provided once per week, with children's pain and worry ratings occurring immediately before and after each MT session. Follow Up (4-6 weeks after baseline): QOL, pain, and MT/study acceptability questionnaires.
RESULTS: Participants reported significant decreases in pain following two MT sessions, and worry following one session. No significant changes in pain symptoms and QOL were found between baseline and follow up. Participants positively endorsed the study and the MT intervention, and there were no adverse effects reported.
CONCLUSIONS: MT may lead to immediate decreases in pain and worry in children with cancer who are receiving palliative care, however the effects may not be sustained long term. Difficulties regarding protocol feasibility including recruitment and study compliance remain important considerations for future work.
CONTEXT: Many cancer patients are referred to palliative care (PC) outpatient clinics but do not attend consultations, which increases the difficultly of integrating PC in a timely manner.
OBJECTIVES: To evaluate the frequency, causes and profile of missing first-time consultations in a PC outpatient clinic.
METHODS: Data from advanced cancer patients who were scheduled for first-time visits to the PC Outpatient Clinic from September 2018 to August 2019 were analyzed. Missed consultation (MC) was defined as a non-performed consultation with no prior notice of cancellation and missed opportunity of palliative care (MOPC) was defined as a non-performed consultation regardless of being notified in advance. The causes of the absence were identified by telephone using a standardized form. Logistic regression models were used to identify the profile of patients who MOPC.
RESULTS: 1,468 patients were scheduled for first-time visits to the PC Outpatient Clinic; MC = 21.7% (n=275) and MOPC = 32.5% (n=478). Of the total number of patients who MOPC, 86 (18%) were later seen in a median time (p25-p75) of 29.5 days (7.0 -66.5). The most common cause of MOPC was death before consultation (n=92, 29.8%). Referral to PC using a standardized protocol (OR: 0.787, p=0.044) and residence in distant cities (OR: 2.394, p<0.001) were independently associated with MOPC.
CONCLUSIONS: Approximately one third of patients eligible for PC miss the opportunity to be included earlier; only 18% of them are consulted later. Use of standardized referral protocols may help to reduce these absence rates.
Continuing the transition to competency-based education, Hospice and Palliative Medicine (HPM) fellowship programs began using context-free reporting milestones (RMs) for Internal Medicine subspecialties in 2014 but quickly recognized they did not reflect the nuanced practice of the field. This article describes the development of 20 subspecialty-specific RMs through consensus group process and vetting by HPM educators. A workgroup of content experts employed an iterative consensus building process between December 2017 and February 2019 to draft new RMs and to create a Supplemental Guide that outlines the intent of each RM, examples of each developmental trajectory, assessment methods, and resources to guide educators. Program directors, program coordinators, and designated institutional officers were contacted directly to solicit feedback. The majority of respondents agreed or strongly agreed that each RM represented a realistic progression of knowledge, skills, and behaviors, and that the set of milestones adequately discriminated between meaningful levels of competency. Similarly, respondents felt that the Supplemental Guide was a useful resource. The result is a set of carefully developed and broadly vetted RMs that represent a progression of development for HPM physicians over one year of clinical fellowship training.
BACKGROUND: The definition of the eligibility criteria of newborn, infant, child, or adolescent patients for palliative care (PC) is complicated by the fact that these patients generally present with very specific case histories that make it inadvisable to directly adopt existing PC protocols devised for adult patients. Thus, the goal of this paper is to define a standard set of criteria for establishing pediatric palliative care (PPC) eligibility.
METHODS: The method adopted was that of the consensus conference. According to the guidelines issued by the Higher Institute of Health, the Board of the Italian Society for Palliative Care (i.e. steering committee) appointed a multidisciplinary group of eight health care professionals (i.e. doctors, nurses and psychologists) who worked from May 2014 to February 2016 to reach a consensus over PPC eligibility. This panel of relevant experts redacted a report summarizing all available scientific information concerning PPC, which was then submitted to the attention of a multidisciplinary jury composed of specialists and non-specialists of the field. The document thus produced was subsequently reviewed by an extended team of experts.
RESULTS: The consensus conference drafted a final document determining the guidelines for PPC eligibility of newborns, infants, children, and adolescents suffering from either oncological or non-oncological diseases.
CONCLUSIONS: This report provides health care providers with practical guidelines on how to define the eligibility of pediatric patients for PPC. Given the current situation in Italy, these guidelines will be instrumental in assisting the implementation of adequate generalist and specialist PPC services as well as in helping policymakers draft and implement national legislation pertaining to PPC.
Background: Palliative care is highly relevant for patients with heart failure (HF), and there is a need for quantitative information on quality of care. Accordingly, this study aimed to develop a set of quality indicators (QIs) for palliative care of HF patients, and to conduct a practical pilot measurement of the proposed QIs in clinical practice.
Methods and Results: We used a modified Delphi technique, a consensus method that involves a comprehensive literature review, face-to-face multidisciplinary panel meeting, and anonymous rating in 2 rounds. A 15-member multidisciplinary expert panel individually rated each potential indicator on a scale of 1 (lowest) to 9 (highest) for appropriateness. All indicators receiving a median score =7 without significant disagreement were included in the final set of QIs. Through the consensus-building process, 35 QIs were proposed for palliative care in HF patients. Practical measurement in HF patients (n=131) from 3 teaching hospitals revealed that all of the proposed QIs could be obtained retrospectively from medical records, and the following QIs had low performance (<10%): “Intervention by multidisciplinary team”, “Opioid therapy for patients with refractory dyspnea”, and “Screening for psychological symptoms”.
Conclusions: The first set of QIs for palliative care of HF patients was developed and could clarify quantitative information and might improve the quality of care.
BACKGROUND: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.
PURPOSE: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.
SEARCH STRATEGY: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.
FINDINGS: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.
IMPLICATIONS FOR PRACTICE: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.
IMPLICATIONS FOR RESEARCH: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research.
Background: Palliative care (PC) is increasingly recognized as essential for oncology care, and several academic societies strongly recommend integrating oncology and palliative care (IOP) in daily practice. Similarly, the Japanese government encouraged the implementation of IOP through the Cancer Control Act of 2007; however, its detailed progress remains unclear. Therefore, this cross-sectional nationwide survey was conducted to investigate the current status and hospital executive physicians’ perception of IOP.
Methods: The questionnaire was developed based on IOP indicators with international consensus. It was distributed to executive physicians at all government-designated cancer hospitals (DCHs, n = 399) and matched non-DCHs (n = 478) in November 2017 and the results were compared.
Results: In total, 269 (67.4%) DCHs and 259 (54.2%) non-DCHs responded. The number of PC resources in DCHs was significantly higher than those in non-DCHs (e.g., full-time PC physicians and nurses, 52.8% vs. 14.0%, p < 0.001; availability of outpatient PC service =3 days per week, 47.6% vs. 20.7%, p < 0.001). Routine symptom screening was more frequently performed in DCHs than in non-DCHs (65.1% vs. 34.7%, p < 0.001). Automatic trigger for PC referral availability was limited (e.g., referral using time trigger, 14.9% vs. 15.3%, p = 0.700). Education and research opportunities were seriously limited in both types of hospitals. Most executive physicians regarded IOP as beneficial for their patients (95.9% vs. 94.7%, p = 0.163) and were willing to facilitate an early referral to PC services (54.7% vs. 60.0%, p < 0.569); however, the majority faced challenges to increase the number of full-time PC staff, and < 30% were planning to increase the staff members.
Conclusions: This survey highlighted a considerable number of IOP indicators met, particularly in DCHs probably due to the government policy. Further efforts are needed to address the serious research/educational gaps.
Spirituality and religion are at the core of Kenyan life. Pastoral leaders play a key role in shaping the individual and community's response to living with chronic and life-threatening illnesses. Involvement of religious leaders would therefore be critical in advocacy and education efforts in palliative care (PC) to address the needs of this population. The goal of this study was to evaluate the knowledge and perceptions of religious leaders in Western Kenya regarding PC. This was a mixed-methods study with 86 religious leaders utilizing a 25-question survey followed by 5-person focus group discussions. Eighty-one percent of participants agreed that pastors should encourage members with life-threatening illnesses to talk about death and dying. However, almost a third of participants (29%) also agreed with the statement that full use of PC can hasten death. The pastors underscored challenges in end-of-life spiritual preparation as well as the importance of traditional beliefs in shaping cultural norms. Pastors supported the need for community-based PC education and additional training in PC for religious leaders. The results of this study confirm the dominant role of religion and spirituality in PC in Kenya. This dominant role in shaping PC is tied closely to Kenyan attitudes and norms surrounding death and dying.
Objective: We still don't know if recurrent major depressive disorder (RMDD) may impact the quality of the end-of-life (EOL) cancer care in France. To tackle this knowledge gap, we explored EOL care in RMDD subjects who died from cancer compared to subjects without psychiatric disorder in a 4-year nationwide cohort study.
Design: Nationwide cohort study.
Setting: National hospital database, France.
Participants: All patients aged =15 years who died from cancer in hospital: 4070 RMDD subjects and 222,477 controls, 2013-2016, France.
Main outcome measures: Palliative care in the last 31 days of life and high-intensity EOL care including chemotherapy in the last 14 days of life, artificial nutrition, tracheal intubation, mechanical ventilation, gastrostomy, cardiopulmonary resuscitation, dialysis, transfusion, surgery, endoscopy, imaging, intensive care unit and emergency department admission in the last 31 days of life. Multivariate generalized mixed models with log-normal distribution was used to compare RMDD subjects and controls.
Results: Compared to the controls, the RMDD subjects died 3 years younger, had more comorbidities, more thoracic cancers, less metastases and longer time from cancer diagnosis to death. After matching and adjustment, subjects with RMDD were found to receive more palliative care and less high-intensity EOL care, had fewer iterative admissions to acute care unit, and died less often in the intensive care unit and emergency department.
Conclusions: RMDD subjects were more likely to receive palliative care associated with less high-intensity EOL care. Yet the interpretation may be discussed, resulting from either patients’/families’ wishes or difficulties for providers in offering personalized care to RMDD.
OBJECTIVE: To compare Individual Meaning-Centered Psychotherapy-Palliative Care (IMCP-PC) to counselling-based psychotherapy in patients receiving home palliative care (PC).
METHODS: Fifty-one patients with advanced-stage cancer receiving home PC were recruited for this. Two-arm (individual meaning-centered psychotherapy-palliative-IMCP-PC-care vs. counselling) randomized feasibility trial. Anxiety, depression, demoralization, and emotional distress were evaluated before and after three psychotherapy sessions. Patient perceptions of the treatment were assessed after completion of therapy.
RESULTS: Thirty-two patients (16 in each group) completed all three sessions as well as the pre- and post-therapy questionnaires and were therefore included in the final analysis. All patients in the IMCP-PC group showed a significant decrease in levels of demoralization (despair), anxiety, depression, and emotional distress. By contrast, the only variable that significantly improved in the counselling group was demoralization. The post-treatment questionnaire revealed no significant between-group differences regarding patient perception of the structure, focus, or length of treatment. However, the IMCP-PC group rated the treatment more highly with regard to its value in helping them to find meaning in life.
CONCLUSIONS: IMCP-PC is a specific psychotherapy tailored to the needs of patients with advanced cancer. The results of the present study indicate that this treatment is suitable for patients at end of life that are not able to attend outpatient sessions. Although more research is needed, the findings of this feasibility trial suggest that the IMCP-PC merits consideration for patients receiving home palliative care (PC).
BACKGROUND: Palliative care has been developed in recent years in many sub-Saharan countries in Africa due to activities of African Association for Palliative Care. Palliative care units have been established also in most hospitals in Tanzania. Yet very little is known about their functions. Long-term studies about the sustainability of palliative care have not been carried out.
METHODS: The attitudes of 101 members of hospital staff and persons in charge of palliative care services of Ilembula District Designated Hospital (IDDH), Tanzania, were assessed using a modified and prevalidated questionnaire annually in 2014 to 2017. The inquiries were executed on randomly allocated days. Also, the patient and economy registries were analyzed. Additional qualitative data were obtained in personal interviews and during observational visits twice a year at the IDDH.
RESULTS: Ilembula District Designated Hospital has a true multiprofessional palliative care team, which provides services in the hospital, in the villages, and at homes. The activities are based on careful 5-year planning and budgeting. Up to 17 villages have been included in the services. Ninety-five percent of the patients were HIV infected. Short-acting morphine oral solution was the only available strong opioid. The hospital staff evaluated palliative care as good or excellent; 50% of the staff would need more support in the end-of-life care.
CONCLUSIONS: A sustainable palliative care service can be built in a Tanzanian rural hospital if an advanced planning and budgeting are made. In Tanzania, the biggest group of palliative care patients are still HIV-infected individuals. There is a lack of opioids in the country.
Since its creation, the Czech Republic has developed an advanced health system and social system. Life expectancy at birth has increased by an average of 7 years in only 20 years. However, polymorbidity and multicausality have now become topics of concern. In some ways they are products of our success. Yet, the health system and social system were not designed for these patients nor are health care professionals trained and willing to assess and address clinical needs of fragile, chronically ill, and incurable patients. This is true in much of the developing world where initial improvements have led to this new population-based challenge. In that sense, the Czech Republic is an example of what needs to happen in developing countries. Inpatient hospice care, which has been developing in the Czech Republic since 1993, is not the answer to this problem. Rather, approaches to ensure that the early introduction of palliative care in the course of serious illness care, personalized medicine, and a multidisciplinary approach in the system is required. Focusing only on terminal illness care is insufficient. Beginning in 2005-2006, we have worked to create a system of education and clinical services in specialized palliative care in the health and social system. This article seeks to describe the leadership steps of this systemic change in the Czech Republic with the objective of helping others make the same journey.
Background: Little is known about the provision of palliative care to people with dementia (PWD).
Objective: To examine demographic and clinical characteristics of PWD versus nondementia serious illnesses receiving community-based palliative care.
Design: Retrospective study of people 65+ receiving an initial consultation from a community-based palliative care practice between September 2014 and February 2018 using registry data entered by clinicians into the Quality Data Collection Tool for Palliative Care.
Setting: Large not-for-profit organization that provides community-based hospice and palliative care services.
Measurements: Demographics, consult characteristics, advance care planning, and caregiver support.
Results: Of 3883 older adults receiving a first palliative care consultation from this organization, 22% (855) had a dementia diagnosis. Compared to those with nondementia serious illnesses, PWD were older with more impaired function; 36% had a prognosis of less than six months. More PWD than those without dementia had a proxy decision maker and documented advance directive. A quarter of PWD were full code before consultation; nearly half changed to some limitation afterward. Symptom characteristics were missing for 67% of PWD due to collection through self-report. Caregivers of PWD were responsible for significantly more activities of daily living than caregivers of people with nondementia serious illnesses.
Conclusions: This is the first comparison of a large cohort of people with and without dementia receiving a community-based palliative care consult in the United States. Alternative measures of symptom burden should be used in registries to capture data for PWD. Understanding the unique characteristics of PWD will guide future services for this growing population.