BACKGROUND: The PaTz-method (acronym for Palliatieve Thuiszorg, palliative care at home) is perceived to improve coordination, continuity and communication in palliative care in the Netherlands. Although important for further implementation, research showing a clear effect of PaTz on patient-related outcomes is scarce. This study aimed to examine perceived barriers and added value of PaTz and its association with improved care outcomes.
METHODS: Ninety-eight Dutch general practitioners and 229 Dutch district nurses filled out an online questionnaire with structured questions on added value and barrier perception of PaTz-participation, and palliative care provided to their most recently deceased patient, distributed online by Dutch medical and nurses' associations. Data from PaTz-participants and non-participants was compared using Chi-square tests, independent t-tests and logistic regression analyses.
RESULTS: While both PaTz-participants and non-participants perceived PaTz to be beneficial for knowledge collaboration, coordination and continuity of care, time (or lack thereof) is considered the most important barrier for participation. PaTz-participation is associated with discussing five or more end-of-life topics with patients (OR = 3.16) and with another healthcare provider (OR = 2.55). PaTz-participation is also associated with discussing palliative sedation (OR = 3.85) and euthanasia (OR = 2.97) with another healthcare provider. Significant associations with other care outcomes were not found.
CONCLUSIONS: General practitioners and district nurses feel that participating in a PaTz-group has benefits, but perceive various barriers for participation. While participating in a PaTz-group is associated with improved communication between healthcare providers and with patients, the effect on patient outcomes remains unclear. To stimulate further implementation, future research should focus on the effect of PaTz on tangible care characteristics and how to facilitate participation and remove barriers.
GPs should do more to help patients plan for their care and treatment because of a lack of awareness about advance decisions, says a report from the charity Compassion in Dying.
Advance decisions are documents that allow people to state in what circumstances they would want to refuse future treatment if they become seriously ill and cannot make or convey such decisions. Formerly known as “living wills,” advance decisions gained legal status in 2005.
Introduction: La loi du 2 février 2016 a créé de nouveaux droits pour les patients en fin de vie, notamment celui d’une sédation profonde et continue maintenue jusqu’au décès (SPCJD) à la demande du patient, à domicile ou en institution. Ces changements législatifs sont à même de modifier les pratiques des médecins généralistes (MG).
Méthodes: L’objectif de cette étude était de déterminer la proportion des MG du Maine-et-Loire ayant déjà eu recours à la SPCJD à domicile et d’en décrire les pratiques. Il s’agissait d’une enquête par questionnaire en ligne anonyme, réalisée entre avril et mai 2018.
Résultats: Au total, 42 % des MG répondeurs (n=45) déclaraient avoir déjà mis en place une SPCJD à domicile ; le plus souvent après une décision collégiale dans le cadre de discussions informelles plus que de staffs organisés. L’indication la plus fréquente était la souffrance réfractaire : douleur, angoisse et dyspnée étaient les symptômes les plus souvent retrouvés. Ils respectaient majoritairement les recommandations de bonne pratique avec une instauration progressive de la sédation, le plus souvent avec du midazolam associé à un antalgique. Dans 27 % des cas (n=11), l’infirmier était seul au domicile lors de l’initiation de la SPCJD. Au total, 58 % (n=26) des médecins ayant instauré une SPCJD déclaraient ne pas avoir reçu de formation spécifique sur ce domaine.
Conclusion: Malgré un manque de formation à ce sujet, les MG sont nombreux à mettre en place des SPCJD afin d’accompagner leurs patients dans une démarche de fin de vie à domicile. Ils connaissent globalement bien les recommandations concernant ce sujet.
BACKGROUND: At the end of life, about 85-90% of patients can be treated within primary palliative care (PC) provided by general practitioners (GPs). In Germany, there is no structured approach for the provision of PC by GPs including a systematic as well as timely identification of patients who might benefit from PC, yet. The project "Optimal care at the end of life" (OPAL) focusses on an improvement of primary PC for patients with both oncological and non-oncological chronic progressive diseases in their last phase of life provided by GPs and health care services.
METHODS: OPAL will take place in Hameln-Pyrmont, a rural region in Lower Saxony, Germany. Target groups are (a) GPs, (b) relatives of deceased patients and (c) health care providers. The study follows a three-phase approach in a mixed-methods and pre-post design. In phase I (baseline, t0) we explore the usual practice of providing PC for patients with chronic progressive diseases by GPs and the collaboration with other health care providers. In phase II (intervention) the Supportive and Palliative Care Indicators Tool (SPICT) for the timely identification of patients who might benefit from PC will be implemented and tested in general practices. Furthermore, a public campaign will be started to inform stakeholders, to connect health care providers and to train change agents. In phase III (follow-up, t1) we investigate the potential effect of the intervention to evaluate differences in the provision of PC by GPs and to convey factors for the implementation of SPICT in general practices.
DISCUSSION: The project OPAL is the first study to implement the SPICT-DE regionwide in general practices in Germany. The project OPAL may contribute to an overall optimisation of primary PC for patients in Germany by reducing GPs' uncertainty in initiating PC, by consolidating their skills and competencies in identifying patients who might benefit from PC, and by improving the cooperation between GPs and different health care stakeholders.
OBJECTIVE: This study examined advance care planning as delivered by general practice registrars and recently fellowed GPs in New South Wales rural settings. The facilitators and barriers to advance care planning uptake in these areas were investigated, as well as the state of general practice training on advance care planning.
DESIGN: Qualitative descriptive methodology, involving semi-structured face-to-face and telephone interviews.
SETTING: Primary care.
PARTICIPANTS: General practice registrars and recently fellowed GPs in New South Wales rural settings. Definition of rural using the Australian Standard Geographical Classification - Remoteness Area. Thirteen participants were included in the study.
MAIN OUTCOME MEASURES: Thematic analysis of interview transcripts elucidated key issues emerging from participants' accounts.
RESULTS: Key barriers included doctor-dependent uptake, demands on doctor's time and the limited relevant resources available. Facilitators recognised were patient control in end-of-life care and long-standing relationships between GPs and their patients. Uptake among patients was low, and minimal training on advance care planning reported.
CONCLUSION: The lack of training opportunities in advance care planning during vocational training, especially when combined with the essential role played by rural GPs in initiating advance care planning and providing end-of-life care, appears to be a major problem that might contribute to poor uptake among patients in rural areas. This study demonstrated, however, the significant benefits that advance care planning could bring in patients living in rural communities if delivered effectively. Given that rural GPs face a number of barriers to providing routine health care, these results highlight an important need to provide GPs and rural communities with support, education, incentive, better administrative tools, options and greater awareness of advance care planning.
Background: Few studies have specifically assessed the scope, nature and challenges of palliative and end-of-life care in rural general practice. These knowledge gaps limit the development of evidence-based policies and services for patients in the last months of life. This study aimed to explore the perspectives of general practitioners (GPs) and other stakeholders on rural GPs' involvement and challenges in providing palliative and end-of-life care in regional Australia.
Methods: A qualitative study involving five focus groups with 26 GPs based in rural/regional Western Australia together with 15 individual telephone interviews with four GPs and 11 other stakeholders involved in end-of-life care across Australia.
Results: The rural GPs' central role in end-of-life care was recognized by the majority of participants but multiple challenges were also identified. Some challenges were comparable to those found in urban settings but others were more pronounced, including resource limitations and lack of training. Inappropriate payment models discouraged GPs' involvement in some aspects of end-of-life care, such as case conferences and home visits. Compared to GPs in urban settings, those in rural/regional communities often reported closer doctor-patient relationships and better care integration and collaboration. These positive aspects of care could be further developed to enhance service provision. Our study highlighted the importance of regular interactions with other professionals and patients in providing end-of-life care, but many GPs and other stakeholders found such interactions more challenging than the more "technical" aspects of care.
Conclusions: Rural/regional GPs appear to be disproportionately affected by inappropriate payment models and limited resources, but may benefit from closer doctor-patient relationships and better care integration and collaboration relative to urban GPs. Systematic collection of empirical data on GP management at end-of-life is required to build on these strengths and address the challenges.
General practitioners (GPs) play a key role in the timely diagnosis of dementia and also in advance care planning (ACP). They often have known patients and their families for decades and are familiar with their values and treatment preferences; they are, therefore, in a position to initiate the ACP process even before the appearance of the first symptoms of dementia and certainly following disclosure of the diagnosis. To do so, they should recognise whether patients are receptive to an ACP consultation or whether they might reject it for personal, social or cultural reasons. Under no circumstances should the patient or their family be coerced into making these provisions. In most countries, the current framework does not provide enough time and money for GPs to carry out actual ACP consultations completely on their own. There is evidence that specially trained health professionals are able to more effectively discuss treatment goals and limits of life-prolonging measures than GPs who are well acquainted with their patients. Consequently, we suggest that it will be the GPs' task to seize the right moment for starting an ACP process, to raise awareness of patients and their relatives about ACP, to test the patient's decision-making capacity and, finally, to involve appropriately trained healthcare professionals in the actual ACP consultation process. Care should be taken that these professionals delivering time-intensive ACP consultations are not only able to reflect on the patient's values but are also familiar with the course of the disease, the expected complications and the decisions that can be anticipated. The GP will ensure an active exchange with the ACP professional and should have access to the documentation drawn up in the ACP consultation process (treatment plan and advance directive including instructions for medical emergencies) as soon as possible. GPs as coordinators of healthcare provision should document appropriately all specialists involved in the care and ensure that treatment decisions are implemented in accordance with the patient's preferences for future care or the presumed will of the patient.
Background: While most people say they would prefer to be cared for and to die at home, this outcome is often not achieved. This represents a service gap that general practitioners (GPs) are optimally positioned to fill.
Objectives: The aim of this paper is to synthesise existing evidence-based frameworks of palliative care together with other resources, to present a cohesive model of care that GPs can easily systematise to guide high-quality home-based palliative care.
Discussion: Key clinical processes include advance care planning and development of medical goals of patient care plans and terminal care plans. Three essential elements for high-quality palliative care incorporated into the model include a compassionate GP, the care team and various practical resources. Palliative care sits well within the GP specialist scope of practice. GPs have at their disposal many resources that effectively and efficiently support them in their palliative care practice.
Introduction: To support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs.
METHODS: We performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved.
RESULTS: Trained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer.
CONCLUSIONS: RADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure.
BACKGROUND/AIM: Appropriate decision-making in end-of-life (EOL) care is essential for both junior and senior physicians. The aim of this study was to compare the decision-making and attitudes of medical students with those of experienced general practitioners (GP) regarding EOL-care.
MATERIALS AND METHODS: A questionnaire presenting three cancer patient scenarios concerning decisions and ethical aspects of EOL-care was offered to 500 Finnish GPs and 639 graduating medical students in 2015-2016.
RESULTS: Responses were received from 222 (47%) GPs and 402 (63%) students. The GPs withdrew antibiotics (p<0.001) and nasogastric tubes (p=0.007) and withheld resuscitation (p<0.001), blood transfusions (p=0.002) and pleural drainage (p<0.001) more often than did the students. The students considered euthanasia and assisted suicide less reprehensible (p<0.001 in both) than did the GPs.
CONCLUSION: Medical students were more unwilling to withhold and withdraw therapies in EOL-care than were the GPs, but the students considered euthanasia less reprehensible. Medical education should include aspects of decision-making in EOL-care.
Background: Advance directives (ADs) are seldom discussed between primary care physicians (PCPs) and their patients, especially those with noncancer diseases. The aim was to identify the factors associated with discussing AD by noncancer patients with their physicians.
Methods: This cross-sectional study was conducted in a hospital or clinic from October to December 2017. Physicians chose eligible noncancer patients aged 20 years or older to respond to an anonymous self-completed questionnaire inquiring about the objective variable "I want to discuss AD with my doctor," as well as basic characteristics, and facilitators and barriers to discussing AD identified in previous studies. The physicians responded to a survey comprising the Palliative Performance Scale (PPS) and inquiring about the disease category for each patient. Data were analyzed using binomial logistic regression analysis.
Results: A total of 270 patients (valid response rate, 79.6%) were included. Multivariate analysis identified a period of visit to the study site = 3 years (odds ratio [OR], 2.07; 95% confidence interval [CI], 1.05-4.10), physicians who are very good at taking care of patients’ disease (OR, 12.68; 95% CI, 1.12-143.22), and patients’ worry about their quality of life (QOL) in the future (OR, 2.69; 95% CI, 1.30-5.57) as facilitators for discussing AD with physicians, and PPS = 90 (OR, 0.51; 95% CI, 0.26-0.98) as a barrier.
Conclusions: Our study indicates that patients' future QOL concerns, a long period of visit to a hospital, and the presence of physical symptoms were associated with the willingness of noncancer patients to discuss AD with PCPs.
The majority of Dutch physicians feel pressure when dealing with a request for euthanasia or physician-assisted suicide (EAS). This study aimed to explore the content of this pressure as experienced by general practitioners (GP). We conducted semistructured in-depth interviews with 15 Dutch GPs, focusing on actual cases. The interviews were transcribed and analysed with use of the framework method. Six categories of pressure GPs experienced in dealing with EAS requests were revealed: (1) emotional blackmail, (2) control and direction by others, (3) doubts about fulfilling the criteria, (4) counterpressure by patient's relatives, (5) time pressure around referred patients and (6) organisational pressure. We conclude that the pressure can be attributable to the patient-physician relationship and/or the relationship between the physician and the patient's relative(s), the inherent complexity of the decision itself and the circumstances under which the decision has to be made. To prevent physicians to cross their personal boundaries in dealing with EAS request all these different sources of pressure will have to be taken into account.
BACKGROUND: The doctor-patient relationship has evolved to respect "the autonomy and patients' rights". One of the cornerstones in such autonomy is the opportunity for patients to draw living wills, also known as advance directives (AD). However, information about AD available to patients remains scarce largely due to the lack of involvement of General practitioners for several reasons. The aim of our study was to evaluate current general practitioner residents' (GPR) behavior concerning their role in informing their patients about AD.
METHOD: We built a French nationwide survey from GPR class of 2012 to 2014.
RESULTS: Two thousand three hundred ten residents completed our survey (21.1% of the total population of GPR during the period). 89.8% declared their willingness to offer patients the opportunity of writing AD. When asked about the usefulness of AD, 73.6% of residents responded that these are a suitable help for patients, but 19.7% considered that AD are essentially geared towards frail patients. Among residents who want to inform patients about AD (n = 2075), 14.7% wanted to involve all patients. Only 20.5% thought that elderly people should be systematically informed about AD. When the question involves other frail people in various disease areas, information seems relevant for 60.1% of GPR considering patient with cancer or malignant hematologic disease and for 56.2% about patients affected by neurodegenerative disease. When considering the routine use of AD, 20.5% of GPR would take them into account only if they are in agreement with the patient’s decision.
CONCLUSIONS: The results of the survey indicate that GPR would rather choose to decide who should be informed about AD, and when to take AD into account for ethical concerns.
BACKGROUND: The implementation of early palliative care within a primary care setting is a recent academic topic. Recruiting General Practitioners (GPs) to participate in a palliative care study can be challenging. The pro-Spinoza project implemented a Care Pathway for Primary Palliative Care in 5 areas in Belgium. During this project, the feasibility of the recruitment of GPs and palliative care patients was evaluated.
METHODS: The recruitment process was recorded in detail via an electronic logbook combining quantitative and qualitative data. Quantitative recordings included the contact types and the number of contacts with eligible GPs and were analysed descriptively. Qualitative recordings included field notes with feedback from the GPs and other stakeholders and were thematically analysed starting from the Grol and Wensing framework for professional behaviour change.
RESULTS: Of 4065 eligible GPs working in 5 areas under research, 787 GPs (19%) were contacted individually, 398 GPs (9,8%) were contacted face-to-face and most of these 398 GPs showed high interest in the topic. 112 GPs (2,8%) signed the collaboration agreement, but finally only 65 GPs (1,6%) delivered at least a completed baseline-questionnaire. Despite the initial interest in participating, the unpredictable and busy daily workloads of the GPs, as well as inexperience with research protocols, impeded the ability of the GPs to fully engage in the study. This resulted in the high dropout rate. Participating GPs reported that they had underestimated the effort required to effectively participate in the project.
CONCLUSIONS: Recruitment of GPs to palliative care research is challenging. Primary care is a vital service to engage in palliative care research however the practical limitations reduce the ability of the service to effectively engage in the research. More research is needed to determine how GPs might be better supported in research.
Music is one of the things in my life that has most reliably gotten me into and kept me out of trouble. Having played in bands for decades, I see parallels with the practice of medicine. As a hospitalist and a palliative care pediatrician, I would like to apply lessons from music to consider how general palliative care (provided by all clinicians) and specialty palliative care (provided by board-certified physicians) can work together in harmony. Music (like medicine) thrives through collaboration, benefits from specialized knowledge, and begs to be shared.
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Introduction: Primary care has a central role in palliative and end of life care: 45.6% of deaths in England and Wales occur under the care of primary care teams at home or in care homes. The Community Care Pathways at the End of Life (CAPE) study investigated primary care provided for patients in the final 6 months of life. This paper highlights the opportunities and challenges associated with primary palliative care research in the UK, describing the methodological, ethical, logistical and gatekeeping challenges encountered in the CAPE study and how these were addressed.
The study methods: Using a mixed-methods approach, quantitative data were extracted from the general practitioner (GP) and district nurse (DN) records of 400 recently deceased patients in 20 GP practices in the East of England. Focus groups were conducted with some GPs and DNs, and individual interviews held with bereaved carers and other GPs and DNs.
The challenges addressed Considerable difficulties were encountered with ethical permissions, with GP, DN and bereaved carer recruitment and both quantitative and qualitative data collection. These were overcome with flexibility of approach, perseverance of the research team and strong user group support. This enabled completion of the study which generated a unique primary palliative care data set.
Introduction : La HAS a créé en 2016 un document d'information et d'aide à la rédaction des directives anticipées. L'objectif était de répondre au manque de rédaction des directives anticipées depuis 2005, en lien avec un défaut d'information sur le dispositif. L'objet de notre étude était d'explorer les opinions et perceptions des médecins généralistes (MG) sur ce nouveau document, et comment ils pourraient l'intégrer dans leur pratique en soins primaires.
Méthodes : Étude qualitative par entretiens individuels semi-directifs réalisée auprès de 9 MG après échantillonnage raisonné et conduits jusqu'à saturation du recueil de données. Analyse thématique manuelle avec double codage croisé, dans une perspective phénoménologique. Résultats : Les MG jugent les documents pertinents, complets, mais complexes pour certains patients. Le manque de temps et la difficulté à parler de fin de vie sont perçus comme les freins principaux à l'utilisation de l'outil. Néanmoins les MG pensent qu'il permet d'aborder le sujet des directives anticipées auprès des patients et les amène à une réflexion sur leur fin de vie. Selon les médecins, la mise en place du dispositif nécessiterait d'être accompagné d'une information de la population et une formation des professionnels de santé.
Discussion : Les documents de la HAS sont complets et peuvent faciliter la rédaction des directives anticipées s'il y a une information de la population par les médias. Cela doit s'accompagner de la démocratisation de la discussion sur la fin de vie entre le patient et son médecin. Elle devra être initiée par le médecin.
Origine : BDSP. Notice produite par BIUSANTE 89AR0xCn. Diffusion soumise à autorisation
Notre travail s’appuie sur un constat : le médecin généraliste est désormais confronté à des patients atteints de pathologies longues et incurables, en phase de soins palliatifs. Or le généraliste n’est pas formé à leur prise en charge, différente de celle d’un autre patient : il ne s’agit plus d’aider sur le chemin de la guérison mais d’accompagner vers la mort.
Il s’agit donc de réfléchir à la posture du généraliste face à ce type de patient, lors d’un suivi au long cours. Quelles démarches doit-il adopter au sein du nouvel espace qu’est celui de la rencontre en soins palliatifs ?
Background: Identification of patients at the end-of-life is the first step in care planning and many general practices have Palliative Care Registers. There is evidence that these largely comprise patients with cancer diagnoses, but little is known about the identification process.
Objective: To explore the barriers that hinder GPs from identifying and registering patients on Palliative Care Registers.
Methods: An exploratory qualitative approach was undertaken using semi-structured interviews with GPs in South West England. GPs were asked about their experiences of identifying, registering and discussing end-of-life care with patients. Interviews were audio recorded, transcribed and analysed thematically.
Results: Most practices had a Palliative Care Register, which were mainly composed of patients with cancer. They reported identifying non-malignant patients at the end-of-life as challenging and were reluctant to include frail or elderly patients due to resource implications. GPs described rarely using prognostication tools to identify patients and conveyed that poor communication between secondary and primary care made prognostication difficult. GPs also detailed challenges around talking to patients about end-of-life care.
Conclusions: Palliative Care Registers are widely used by GPs for patients with malignant diagnoses, but seldom for other patients. The findings from our study suggest that this arises because GPs find prognosticating for patients with non-malignant disease more challenging. GPs would value better communication from secondary care, tools for prognostication and training in speaking with patients at the end-of-life enabling them to better identify non-malignant patients at the end-of-life.
Introduction: The provision of palliative end-of-life care (P/EOLc) for patients, wherever they live, is an increasingly important service, particularly given the increasing rates of cancer and other life-threatening diseases in Iran. However, unfortunately, those living in the rural areas of Iran are greatly disadvantaged with respect to this type of care. Therefore, the present study explored the feasibility of organizing P/EOLc in the rural areas of Iran.
Methods: In this qualitative study, two focus group (FG) discussions were held in Tabriz (Iran) with rural family physicians (FPs, n=23) and key P/EOLc stakeholders (n=13). The FG sessions were recorded, transcribed, and the transcriptions checked by participants before the data were subjected to content analysis.
Results: While most FPs indicated that they did not have sufficient involvement in providing P/EOLc, they emphasized the necessity of providing P/EOLc through four main themes and 25 subthemes. The four main themes were labeled as "structures and procedures," "health care provider teams," "obstacles," and "strategies or solutions." Furthermore, according to the main themes and subthemes identified here, the key stakeholders believed that the Iranian health system and the FPs' team have the potential to provide P/EOLc services in rural areas.
Conclusion: The most feasible strategy for providing P/EOLc in Iranian rural areas would be to use the current health care framework and base the process around the FP.