Article

Improving palliative care provision in primary care: A pre- and post-survey evaluation among PaTz groups

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Abstract

Background: In PaTz (PAlliatieve Thuis Zorg, palliative care at home), modelled after the Gold Standards Framework, GPs and community nurses meet on a regular basis to identify patients with palliative care needs (the PaTz register), and to discuss care for these patients. Aim: To study the effects of the implementation of PaTz, and provide additional analyses on two important elements: the PaTz register and patient discussions. Design and setting: A pre- and post-evaluation among Dutch GPs (n= 195 before the start of PaTz;n= 166, 1 year after the start of PaTz). The GPs also provided data on recently deceased patients (n= 460 before the start of PaTz;n= 305 14 months after the start of PaTz). Method: GPs from all 37 PaTz groups filled in questionnaires. Pre- and post-test differences were analysed using multilevel analyses to adjust for PaTz group. Results: Identification of patients with palliative care needs was done systematically for more patients after implementation of PaTz compared with before (54.3% versus 17.6%). After implementation, 64.8% of deceased patients had been included on the PaTz register. For these patients, when compared with patients not included on the PaTz register, preferred place of death was more likely to be known (88.1% of patients not on the register and 97.3% of deceased patients included on the register), GPs were more likely to have considered a possible death sooner (>1 month before death: 53.0% and 80.2%), and conversations on life expectancy, physical complaints, existential issues, and possibilities of care occurred more often (60.8% and 81.3%; 68.6% and 86.1%; 22.5% and 34.2%; 60.8% and 84.0%, respectively). Conclusions: Implementation of PaTz improved systematic identification of palliative care patients within the GP practice. Use of the PaTz register has added value.

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... 65 To optimize and ameliorate collaboration in primary care, PaTz groups were developed, where GPs and DNs meet regularly to identify patients with palliative care needs and to discuss care for these patients. 66 A pre-and post-survey study showed that the implementation of multiprofessional collaboration improved the provision of palliative care. 66,67 Although GPs and DNs are the main providers of palliative care, if needed, they can refer to a chaplain, rehabilitation therapist, or social worker. ...
... 66 A pre-and post-survey study showed that the implementation of multiprofessional collaboration improved the provision of palliative care. 66,67 Although GPs and DNs are the main providers of palliative care, if needed, they can refer to a chaplain, rehabilitation therapist, or social worker. However, in practice, referrals are rare and thus involvement is not yet standard. ...
... 72 HCPs experienced this collaborative model as positive, with improved knowledge exchange, collaboration and communication, and more comprehensive care. 78 66 These respondents are probably more aware of and experienced with palliative care. Moreover, only 4% of the primary care respondents were chaplains and 1% were physiotherapists. ...
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Background Palliative care in primary care and nursing home settings is becoming increasingly important. A multidimensional palliative care approach, provided by a multiprofessional team, is essential to meeting patients’ and relatives’ values, wishes, and needs. Factors that hamper the provision of palliative care in this context have not yet been fully explored. Objectives To identify the barriers to providing palliative care for patients at home or in nursing homes as perceived by healthcare professionals. Design Cross-sectional survey study. Methods A convenience sample of nurses, doctors, chaplains, and rehabilitation therapists working in primary care and at nursing homes in the Netherlands is used. The primary outcome is barriers, defined as statements with ⩾20% negative response. The survey contained 56 statements on palliative reasoning, communication, and multiprofessional collaboration. Data were analyzed using descriptive statistics. Results In total, 249 healthcare professionals completed the survey (66% completion rate). The main barriers identified in the provision of palliative care were the use of measurement tools (43%), consultation of an expert (31%), estimation of life expectancy (29%), and documentation in the electronic health record (21% and 37%). In primary care, mainly organizational barriers were identified, whereas in nursing homes, most barriers were related to care content. Chaplains and rehabilitation therapists perceived the most barriers. Conclusion In primary care and nursing homes, there are barriers to the provision of palliative care. The provision of palliative care depends on the identification of patients with palliative care needs and is influenced by individual healthcare professionals, possibilities for consultation, and the electronic health record. An unambiguous and systematic approach within the multiprofessional team is needed, which should be patient-driven and tailored to the setting.
... Na literatura existem evidências indicando que a maioria dos profissionais de saúde tende a associar esse tipo de cuidado ao momento de finitude da vida e à morte iminente 8 , contribuindo para que, em muitos casos, os profissionais apresentem dificuldades na identificação precoce de pessoas com necessidade de atenção paliativa e que não se enquadram na fase de terminalidade [8][9][10] . ...
... Por meio da pergunta surpresa, foi definido se o paciente deveria ser incluído no registro de cuidados paliativos PaTz. Além da identificação de pessoas que podem se beneficiar dos CP, esse grupo também discutiu as ações que podem ser desenvolvidas para cada paciente identificado 9 . ...
... Na maioria dos estudos, a identificação da população-alvo aumentou significativamente com a implementação dos métodos ou instrumentos explicitados. Apenas o uso do método PaTz indicou certa fragilidade quando se trata da identificação de pacientes não-oncológicos 9 . ...
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This article aims to analyze the evidence available in the literature on the process of identifying adults and elderly people who can benefit from palliative care (PC) in primary health care (PHC). This is an integrative literature review carried out in PubMed, CINAHL, LILACS, Web of Science, and Embase. Eight studies were selected, in which different instruments and methods were distinguished with the purpose of identifying people who can benefit from PC in the context of PHC. The incorporation of these instruments into clinical practice is urgent in order to increase the reach and effectiveness of the services offered by health professionals, considering the current demographic and epidemiological profile that points to the increase of people with a potential need for PC. Different instruments have been successfully used to identify PC in the context of PHC. However, some have weaknesses, such as the fact that they only allow the identification of people with oncological diseases, leaving out other health conditions, which reinforces the need for further studies on this topic.
... Na literatura existem evidências indicando que a maioria dos profissionais de saúde tende a associar esse tipo de cuidado ao momento de finitude da vida e à morte iminente 8 , contribuindo para que, em muitos casos, os profissionais apresentem dificuldades na identificação precoce de pessoas com necessidade de atenção paliativa e que não se enquadram na fase de terminalidade [8][9][10] . ...
... Por meio da pergunta surpresa, foi definido se o paciente deveria ser incluído no registro de cuidados paliativos PaTz. Além da identificação de pessoas que podem se beneficiar dos CP, esse grupo também discutiu as ações que podem ser desenvolvidas para cada paciente identificado 9 . ...
... Na maioria dos estudos, a identificação da população-alvo aumentou significativamente com a implementação dos métodos ou instrumentos explicitados. Apenas o uso do método PaTz indicou certa fragilidade quando se trata da identificação de pacientes não-oncológicos 9 . ...
Article
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This article aims to analyze the evidence available in the literature on the process of identifying adults and elderly people who can benefit from palliative care (PC) in primary health care (PHC). This is an integrative literature review carried out in PubMed, CINAHL, LILACS, Web of Science, and Embase. Eight studies were selected, in which different instruments and methods were distinguished with the purpose of identifying people who can benefit from PC in the context of PHC. The incorporation of these instruments into clinical practice is urgent in order to increase the reach and effectiveness of the services offered by health professionals, considering the current demographic and epidemiological profile that points to the increase of people with a potential need for PC. Different instruments have been successfully used to identify PC in the context of PHC. However, some have weaknesses, such as the fact that they only allow the identification of people with oncological diseases, leaving out other health conditions, which reinforces the need for further studies on this topic.
... A qualitative evaluation study showed that, like the GSF, PaTz is beneficial to healthcare providers: participants felt that it improved cooperation between GPs and DNs, and that it led to better continuity of care, more knowledge on palliative care, and emotional support [17]. A more recent prepost evaluation study showed again that GPs felt that continuity and coordination of care as well as their own competence to provide palliative care improved after implementation of PaTz [18]. ...
... However, again like the GSF [20], research showing a clear effect on patient-related outcomes is scarce. The abovementioned pre-post evaluation study also examined the effect of PaTz on aspects of care that are considered important in quality of palliative care: GPs' awareness of preferred place of death, hospital admission in the final month, treatment goals and GP-patient communication [4,[21][22][23][24][25], but failed to show differences between GPs who did or did not participate in a PaTz group [18]. As some differences were found between patients who were or were not on the PaTz-register or discussed in a PaTz meeting, the authors suggested this might be related to underuse of these important elements of PaTz. ...
... For this study, a questionnaire on perceptions of PaTz, and patient and care characteristics was created in which questions from previous primary palliative care research [18] were used where possible. ...
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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.
... PaTz-participants feel that PaTz improves collaboration, while strengthening participants' expertise and providing emotional support [15], and PaTz is associated with improved communication, both between healthcare providers and with patients [18]. The PaTz-register seems a crucial element in PaTzgroups, as compared to patients who are not on the register, the preferred place of death is more often known for patients who are on the register, who also are less often admitted to the hospital in the final month [19]. In addition, their death is anticipated earlier by their GP, treatment is aimed at palliation earlier and they more often have conversations on end of life topics, like life expectancy and palliative care treatment options [19]. ...
... The PaTz-register seems a crucial element in PaTzgroups, as compared to patients who are not on the register, the preferred place of death is more often known for patients who are on the register, who also are less often admitted to the hospital in the final month [19]. In addition, their death is anticipated earlier by their GP, treatment is aimed at palliation earlier and they more often have conversations on end of life topics, like life expectancy and palliative care treatment options [19]. ...
Article
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Background: PaTz (palliative care at home) is a method to improve palliative care in the primary care setting in the Netherlands. PaTz has three basic principles: (1) local GPs and DNs meet at least six times per year to identify and discuss their patients with a life-threatening illness; (2) these meetings are supervised by a specialist palliative care professional; (3) groups use a palliative care register on which all identified patients are listed. Since the start in 2010, the number of PaTz-groups in the Netherlands has been growing consistently. Although the theory of all PaTz-groups is the same, the practical functioning of PaTz-groups may vary substantially, which may complicate further implementation of PaTz as well as interpretation of effect studies. This study aims to describe the variation in practice of PaTz-groups in the Netherlands. Method: In this prospective observational study, ten PaTz-groups logged and described the activities in their meetings as well as the registered and discussed patients and topics of discussions in registration forms for a 1 year follow-up period. In addition, non-participatory observations were performed in all participating groups. Meeting and patient characteristics were analysed using descriptive statistics. Conventional content analysis was performed in the analysis of topic discussions. Results: While the basic principles of PaTz are found in almost every PaTz-group, there is considerable variation in the practice and content of the meetings of different PaTz-groups. Most groups spend little time on other topics than their patients, although the number of patients discussed in a single meeting varies considerably, as well as the time spent on an individual patient. Most registered patients were diagnosed with cancer and patient discussions mainly concerned current affairs and rarely concerned future issues. Conclusion: The basic principles are the cornerstone of any PaTz-group. At the same time, the observed variation between PaTz-groups indicates that tailoring a PaTz-group to the needs of its participants is important and may enhance its sustainability. The flexibility of PaTz-groups may also provide opportunity to modify the content and tools used, and improve identification of palliative patients and advance care planning.
... Informatie over markering van de palliatieve fase, persoonlijke context en behoeften, prioriteiten, en behandelwensen engrenzen zijn niet altijd beschikbaar. [9][10][11] Om het risico op niet-passende zorg in de palliatieve fase te verminderen, heeft de Academische Werkplaats Palliatieve Zorg in de ONDERZOEK NED TIJDSCHR GENEESKD. 2024;168:D8236 ...
... Most studies in this review focused on communication with physicians in a hospital setting, although many studies also emphasize the important role of general practitioners, nursing home physicians, and nurses in different care settings in palliative care (Gilissen et al. 2017;Sekse et al. 2017;Van der Plas et al. 2018). Therefore, more attention should be paid to the experiences of patients and relatives with communication with nurses in all care settings and physicians in nonhospital care settings. ...
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Objectives: In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes an empathic care relationship. We explored the perspectives of patients with an advanced illness and their relatives on effective communication with health-care professionals. Methods: A systematic review was conducted. We searched Embase, Medline, Web of Science, CINAHL, and Cochrane for original empirical studies published between January 1, 2015 and March 4, 2021. Results: In total, 56 articles on 53 unique studies were included. We found 7 themes that from the perspectives of patients and relatives contribute to effective communication: (1) open and honest information. However, this open and honest communication can also trigger anxiety, stress, and existential disruption. Patients and relatives also indicated that they preferred (2) health-care professionals aligning to the patient's and relative's process of uptake and coping with information; (3) empathy; (4) clear and understandable language; (5) leaving room for positive coping strategies, (6) committed health-care professionals taking responsibility; and (7) recognition of relatives in their role as caregiver. Most studies in this review concerned communication with physicians in a hospital setting. Significance of results: Most patients and relatives appreciate health-care professionals to not only pay attention to strictly medical issues but also to who they are as a person and the process they are going through. More research is needed on effective communication by nurses, in nonhospital settings and on communication by health-care professionals specialized in palliative care.
... Measures the perceived quality of the (organization) of the palliative care, and the (preferred) place of death 6 2) Questionnaire among family members of deceased patients within 6 weeks after death Data collected in 13 intervention-practices, and in 8 comparison-practices. No pre-intervention (t¼0) measurement. ...
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Objectives This study presents the design of an integrated, proactive palliative care pathway covering the full care cycle and evaluates its effects using 3 types of outcomes: (1) physician-reported outcomes, (2) outcomes reported by family, and (3) (utilization of) health care outcomes. Design A clustered, partially controlled before-after study with a multidisciplinary integrated palliative care pathway as its main intervention. Setting and Participants after assessment in hospital departments of oncology, and geriatrics, and in 13 primary care facilities, terminally ill patients were proactively included into the pathway. Patients' relatives and patients’ general practitioners (GPs) participated in a before/after survey and in interviews and focus groups. Intervention A multidisciplinary, integrated palliative care pathway encompassing (among others) early identification of the palliative phase, multidisciplinary consultation and coordination, and continuous monitoring of outcomes. Measures Measures included GP questionnaire: perceived quality of palliative care; questionnaires by family members: FAMCARE, QOD-LTC, EDIZ; and 3 types of health care outcomes: (1) utilization of primary care: consultations, intensive care, communication, palliative home visits, consultations and home visits during weekends and out-of-office-hours, ambulance, admission to hospital; (2) utilization of hospital care: outpatient ward consultations, day care, emergency room visits, inpatient care, (radio) diagnostics, surgical procedures, other therapeutic activities, intensive care unit activities; (3) pharmaceutical care utilization. Results GPs reported that palliative patients die more often at their preferred place of death, and that they now act more proactively toward palliative patients. Relatives of included, deceased patients reported clinically relevant improved quality of dying, and more timely palliative care. Patients in the pathway received more (intensive) primary care, less unexpected care during out-of-office hours, and more often received hospital care in the form of day care. Conclusions and Implications An integrated palliative care pathway improves a variety of clinical outcomes important to patients, their families, physicians, and the health care system. The integration of palliative care into multidisciplinary, proactive palliative care pathways, is therefore a desirable future development.
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Context Incorporation of a palliative care approach is increasingly needed in primary care and nursing home care because most people with a life-limiting illness or frailty live there. Objectives To explore patients’ and relatives’ experiences of palliative care at home and in nursing homes. Methods Generic qualitative research in a purposive sample of patients with an estimated life expectancy of <1 year, receiving care at home or in a nursing home, and their relatives. Data is collected through semi-structured interviews and thematically analyzed by a multidisciplinary research team. Results Seven patients and five relatives participated. Three essential elements of palliative care and their contributing factors emerged: 1) be seen (personal attention, alignment to who the patient is as a person, and feeling connected) 2) information needs (illness trajectory and multidimensional symptoms and concerns, and 3) ensuring continuity (single point of contact, availability of HCPs, and coordination of care). Patients and relatives experienced loss of control and safety if these essentials were not met, which depended largely on the practices of the individual health care professional. Conclusion In both primary care and nursing home care, patients and relatives expressed the same essential elements of palliative care. They emphasized the importance of being recognized as a unique person beyond their patient status, receiving honest and clear information aligned with their preferences, and having care organized to ensure continuity. Adequate competence and skills are needed, together with a care organization that enables continuity to provide safe and person-centered care.
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Background Euthanasia has been regulated by law under strict conditions in the Netherlands since 2002. Since then the number of euthanasia cases has constantly increased, and increased exponentially for patients with dementia (PWD). The number of euthanasia requests by such patients is even higher. Recently, an interview study showed that physicians who are confronted with a PWD’s euthanasia request experience problems with communication, pressure from relatives, patients, and society, workload, interpretation of the law, and ethical considerations. Moreover, if honoured, the physician and patient may interpret the right moment for euthanasia differently. Aim To identify ways of supporting GPs confronted with a PWD’s euthanasia request. Design and setting Two expert nominal group meetings were organised with Dutch care physicians for older people, GPs, legal experts, a healthcare chaplain, a palliative care consultant, and a psychologist. Method A total of 15 experts participated in the meetings. Both meetings were audio-recorded, transcribed verbatim, and analysed using thematic analysis. Results Four themes emerged from the meetings: support provided by healthcare professionals, influencing public opinion, educational activities, and managing time and work pressure. The need for support was considered highest for GPs for all of these themes. Conclusion Consensus was reached with the help of experts on support needs for GPs confronted with euthanasia requests from PWD. A concise and clear explanation of the law is strongly desired. Changing public opinion seems the most challenging and a long-term aim. Communication training for finding the right balance between the physician’s professional responsibility and the patient’s autonomy should be made available, as a short-term aim.
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Palliatieve Thuiszorg (PaTz) is een methode om de palliatieve zorg in de eerste lijn te verbeteren via regionale registratie- en gespreksbijeenkomsten van huisartsen en wijkverpleegkundigen. Uit dit retrospectieve vragenlijstonderzoek blijkt dat PaTz-deelnemers betere samenwerking en deskundigheid in de palliatieve zorg ervaren. PaTz-deelname is geassocieerd met een toename in communicatie over levenseindeonderwerpen. De tijdsinvestering is een belangrijke barrière voor deelname. Om huisartsen verder te enthousiasmeren voor de PaTz-methode bevelen we nader effectonderzoek en een structurele vergoeding voor PaTz-deelname aan.
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De Spoedeisende Hulp staat onder druk, onder andere omdat steeds meer ouderen er een beroep op doen – meer dan de demografische ontwikkeling zou doen verwachten. Extra capaciteit binnen de ziekenhuizen creëren is niet de oplossing. Beter kan men investeren in 24/7 beschikbare, kortdurende zorg door eerstelijnsverblijven, hospital at home -teams en kleine buurtziekenhuizen.
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Background: Most patients with advanced cancer, debilitating COPD or chronic heart failure (CHF) live at home. General practitioners (GPs) asked for guidance in how to recognize patients in need of palliative care in a timely way and to structure anticipatory care. For that reason, we developed a training for GPs in identifying patients in need of palliative care and in structuring anticipatory palliative care planning and studied its effect on out-of-hours contacts, contacts with their own GP, hospitalizations and place of death. Methods: We performed a cluster randomised controlled trial. GPs in the intervention group were trained in identifying patients in need of palliative care and anticipatory care planning. Next, for each identified patient, they were offered a coaching session with a specialist in palliative care to fine-tune a structured care plan. The GPs in the control group did not receive training or coaching, and were asked to provide care as usual. After one year, characteristics of patients deceased of cancer, COPD or CHF in both study groups were compared with mixed effects models for out-of-hours contacts (primary outcome), contacts with their own GP, place of death and hospitalizations in the last months of their life (secondary outcomes). As a post-hoc analysis, of identified patients (of the intervention GPs) these figures were compared to all other deceased patients, who had not been identified as in need of palliative care. Results: We did not find any differences between the intervention and control group. Yet, only half of the trained GPs (28) identified patients (52), which was only 24 % of the deceased patients. Those identified patients had significantly more contacts with their own GP (B 4.5218; p <0.0006), were less often hospitalized (OR 0.485; p 0.0437) more often died at home (OR 2.126; p 0.0572) and less often died in the hospital (OR 0.380; p 0.0449). Conclusions: Although we did not find differences between the intervention and control group, we found in a post-hoc analysis that those patients that had been identified as in need of palliative care had more contacts with their GP, less hospitalizations, and more often died at home. We recommend future controlled studies that try to further increase identification of patients eligible for anticipatory palliative care. The Netherlands National Trial Register: NTR2815 date 07-04-2010.
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Patients with heart failure have a significant symptom burden and other palliative care needs often over a longer period than patients with cancer. It is acknowledged that this need may be unmet but by how much has not been quantified in primary care data at the population level. This was the first use of Clinical Practice Research Datalink, the world's largest primary care database to explore recognition of the need for palliative care. Heart failure and cancer patients who had died in 2009 aged 18 or over and had at least one year of primary care records were identified. A palliative approach to care among patients with heart failure was compared to that among patients with cancer using entry onto a palliative care register as a marker for a palliative approach to care. Among patients with heart failure, 7% (234/3 122) were entered on the palliative care register compared to 48% (3 669/7 608) of cancer patients. Of heart failure patients on the palliative care register, 29% (69/234) were entered onto the register within a week of their death. This confirms that the stark inequity in recognition of palliative care needs for people with heart failure in a large primary care dataset. We recommend a move away from prognosis based criteria for palliative care towards a patient centred approach, with assessment of and attention to palliative needs including advance care planning throughout the disease trajectory.
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Dying at home and dying at the preferred place of death are advocated to be desirable outcomes of palliative care. More insight is needed in their usefulness as quality indicators. Our objective is to describe whether "the percentage of patients dying at home" and "the percentage of patients who died in their place of preference" are feasible and informative quality indicators. A mortality follow-back study was conducted, based on data recorded by representative GP networks regarding home-dwelling patients who died non-suddenly in Belgium (n = 1036), the Netherlands (n = 512), Italy (n = 1639) or Spain (n = 565). "The percentage of patients dying at home" ranged between 35.3% (Belgium) and 50.6% (the Netherlands) in the four countries, while "the percentage of patients dying at their preferred place of death" ranged between 67.8% (Italy) and 86.0% (Spain). Both indicators were strongly associated with palliative care provision by the GP (odds ratios of 1.55-13.23 and 2.30-6.63, respectively). The quality indicator concerning the preferred place of death offers a broader view than the indicator concerning home deaths, as it takes into account all preferences met in all locations. However, GPs did not know the preferences for place of death in 39.6% (the Netherlands) to 70.3% (Italy), whereas the actual place of death was known in almost all cases. GPs know their patients' actual place of death, making the percentage of home deaths a feasible indicator for collection by GPs. However, patients' preferred place of death was often unknown to the GP. We therefore recommend using information from relatives as long as information from GPs on the preferred place of death is lacking. Timely communication about the place where patients want to be cared for at the end of life remains a challenge for GPs.
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Background End-of-life care is often provided in primary care settings. Aim To describe and compare general-practitioner end-of-life care for Dutch patients who died from ‘cancer’, ‘organ failure’ and ‘old-age or dementia’. Design A cross-sectional, retrospective survey was conducted within a sentinel network of general practitioners. General practitioners recorded the end-of-life care of all patients who died (1 January 2009 to 31 December 2011). Differences in care between patient groups were analysed using multivariate logistic regressions performed with generalised linear mixed models. Setting/participants Up to 63 general practitioners, covering 0.8% of the population, recorded the care of 1491 patients. Results General practitioners personally provided palliative care for 75% of cancer, 38% of organ failure and 64% of old-age/dementia patients (adjusted odds ratio (confidence interval): cancer (reference category); organ failure: 0.28 (0.17, 0.47); old-age/dementia: 0.31 (0.15, 0.63)). In the week before death, 89% of cancer, 77% of organ failure and 86% of old-age/dementia patients received palliative treatments: (adjusted odds ratio (confidence interval): cancer (reference category); old-age/dementia: 0.54 (0.29, 1.00); organ failure: 0.38 (0.16, 0.92)). Options for palliative care were discussed with 81% of cancer, 44% of organ failure and 39% of old-age/dementia patients (adjusted odds ratio (confidence interval): cancer (reference category); old-age/dementia: 0.34 (0.21, 0.57); organ failure: 0.17 (0.08, 0.36)). Conclusion The results highlight the need to integrate palliative care with optimal disease management in primary practice and to initiate advance care planning early in the chronic disease trajectory to enable all patients to live as well as possible with progressive illness and die with dignity and comfort.
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Background Using the ‘surprise’ question ‘Would you be surprised if this patient died in the next year?’ may improve physicians’ prognostic accuracy and identify people appropriate for palliative care. Aim Determine the prognostic accuracy of general practitioners asking the ‘surprise’ question about their patients with advanced (stage IV) cancer. Design Prospective cohort study. Setting/participants Between December 2011 and February 2012, 42 of 50 randomly selected general practitioners (Bologna area, Italy) prospectively classified 231 patients diagnosed with advanced cancer according to the ‘surprise’ question and supplied the status of each patient 1 year later. Results Of the 231 patients, general practitioners responded ‘No’ to the ‘surprise’ question for 126 (54.5%) and ‘Yes’ for 105 (45.5%). After 12 months, 104 (45.0%) patients had died; 87 (83.7%) were in the ‘No’ group. The sensitivity of the ‘surprise’ question was 69.3%; the specificity was 83.6%. Positive predictive value was 83.8%; negative predictive value was 69.0%. The answer to the ‘surprise’ question was significantly correlated with survival at 1 year. Patients in the ‘No’ group had an odds ratio of 11.55 (95% confidence interval: 5.83–23.28) and a hazard ratio of 6.99 (95% confidence interval: 3.75–13.03) of being dead in the next year compared to patients in the ‘Yes’ group (p = 0.000 for both odds ratio and hazard ratio). Conclusion When general practitioners used the ‘surprise’ question for their patients with advanced cancer, the accuracy of survival prognosis was very high. This has clinical potential as a method to identify patients who might benefit from palliative care.
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PaTz (an acronym for 'PAlliatieve Thuis Zorg'; palliative care at home) is an intervention to improve palliative care provision and strengthen the generalist knowledge of palliative care. In PaTz general practitioners and district nurses meet on a regular basis to identify patients with palliative care needs and to discuss care for these patients. This study explores experiences with regard to collaboration between general practitioners and district nurses, and perceived benefits of and barriers for implementation of PaTz. This study is conducted within the primary care setting. Participants were 24 general practitioners who filled in a questionnaire, and seven general practitioners, five district nurses and two palliative care consultants who attended one of two focus groups. PaTz led to improved collaboration. Participants felt informational and emotional support from other PaTz participants. Also they felt that continuity of care was enhanced by PaTz. Practical recommendations for implementation were: meetings every 6 to 8 weeks, regular attendance from both general practitioners and district nurses, presence of a palliative care consultant, and a strong chairman. PaTz is successful in enhancing collaboration in primary palliative care and easy to implement. Participants felt it improved continuity of care and knowledge on palliative care. Further research is needed to investigate whether patient and carer outcomes improve.
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Effective communication is central to high-quality end-of-life care. This study examined the prevalence of general practitioner (GP)-patient discussion of end-of-life topics (according to the GP) in Italy, Spain, Belgium, and The Netherlands and associated patient and care characteristics. This cross-sectional, retrospective survey was conducted with representative GP networks. Using a standardized form, GPs recorded the health and care characteristics in the last three months of life, and the discussion of 10 end-of-life topics, of all patients who died under their care. The mean number of topics discussed, the prevalence of discussion of each topic, and patient and care characteristics associated with discussions were estimated per country. In total, 4396 nonsudden deaths were included. On average, more topics were discussed in The Netherlands (mean=6.37), followed by Belgium (4.45), Spain (3.32), and Italy (3.19). The topics most frequently discussed in all countries were "physical complaints" and the "primary diagnosis," whereas "spiritual and existential issues" were the least frequently discussed. Discussions were most prevalent in The Netherlands, followed by Belgium. The GPs from all countries tended to discuss fewer topics with older patients, noncancer patients, patients with dementia, patients for whom palliative care was not an important treatment aim, and patients for whom their GP had not provided palliative care. The prevalence of end-of-life discussions varied across the four countries. In all countries, training priorities should include the identification and discussion of spiritual and social problems and early end-of-life discussions with older patients, those with cognitive decline if possible, and those with non-malignant diseases.
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Background Previous end-of-life cancer research has shown an association between increased family physician continuity of care and reduced use of acute care services; however, it did not focus on a homecare population or control for homecare nursing. Aim Among end-of-life homecare cancer patients, to investigate the association of family physician continuity with location of death and hospital and emergency department visits in the last 2 weeks of life while controlling for nursing hours. Design Retrospective population-based cohort study. Setting/participants Cancer patients with ≥1 family physician visit in 2006 from Ontario, Canada. Family physician continuity of care was assessed using two measures: Modified Usual Provider of Care score and visits/week. Its association with location of death and hospital and emergency department visits in the last 2 weeks of life was examined using logistic regression. Results Of 9467 patients identified, the Modified Usual Provider of Care score demonstrated a dose–response relationship with increasing continuity associated with decreased odds of hospital death and visiting the hospital and emergency department in the last 2 weeks of life. More family physician visits/week were associated with lower odds of an emergency department visit in the last 2 weeks of life and hospital death, except for patients with greater than 4 visits/week, where they had increased odds of hospitalizations and hospital deaths. Conclusions These results demonstrate an association between increased family physician continuity of care and decreased odds of several acute care outcomes in late life, controlling for homecare nursing and other covariates.
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Background: Little is known about how GPs determine whether and when patients need palliative care. Little research has been done regarding the assumption underpinning Lynn and Adamson's model that palliative care may start early in the course of the disease. This study was conducted to explore how GPs identify a need for palliative care in patients. Methods: A qualitative interview study was performed among 20 GPs in the Netherlands. Results: GPs reported that a combination of several signals, often subtle and not explicit, made them identify a need for palliative care: signals from patients (increasing care dependency and not recuperating after intercurrent diseases) and signals from relatives or reports from medical specialists. GPs reported differences in how they identified a need for palliative care in cancer patients versus those with other diseases. In cancer patients, the need for palliative care was often relatively clear because of a relatively strict demarcation between the curative and palliative phase. However, in patients with e.g. COPD or in the very old, GPs' awareness of palliative care needs often arises gradually, relatively late in the disease trajectory.GPs consider the diagnosis of a life-threatening illness as a key point in the disease trajectory. However, this does not automatically mean that a patient needs palliative care at that point. Conclusions: GPs recognize a need for palliative care on the basis of various signals. They do not support the idea underlying Lynn and Adamson's model that palliative care always starts early in the course of the disease.
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To assess the clinical utility of the Gold Standards Framework Prognostic Indicator Guide (GSF) and the Seattle Heart Failure Model (SHF) to identify patients with chronic heart failure (CHF) in the last year of life. An observational cohort study of 138 community based ambulatory patients with New York Heart Association (NYHA) class III and IV CHF managed by a specialist heart failure nursing team. 12 month mortality, and sensitivity and specificity of GSF and SHF. 138 CHF patients with NYHA class III and IV symptoms were identified from a population of 368 ambulatory CHF patients. 119 (86%) met GSF criteria for end of life care. The SHF model identified six (4.3%) patients with a predicted life expectancy of 1 year or less. At the 12 month follow-up, 43 (31%) patients had died. The sensitivity and specificity for GSF and SHF in predicting death were 83% and 22%, and 12% and 99%, respectively. Receiver operator characteristic analysis of SHF revealed a C index of 0.68±0.05 (95% CI 0.58 to 0.77). Chronic kidney disease (serum creatinine ≥140 μmol/l) was a strong univariate predictor of 12 month mortality, with a sensitivity of 56% and specificity of 72%. Neither the GSF nor the SHF accurately predicted which patients were in the last year of life. The poor prognostic ability of these models highlights one of the barriers to providing timely palliative care in CHF.
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The Gold Standards Framework aims to optimize primary palliative care for patients nearing the end of their lives. This paper critically reviews the impact of the Gold Standards Framework since its introduction in 2001 and indicates direction for further research and development. Literature was accessed using specific databases and by contacting subject area specialists. The resultant literature was appraised using an established framework to evaluate healthcare interventions. Fifteen documents were reviewed. The quality of evidence is constrained by methodological limitations, but consistently demonstrates that the Gold Standards Framework improves general practice processes, co-working and the quality of palliative care. However, implementation of the Gold Standards Framework is variable and the direct impact on patients and carers is not known. We conclude that the Gold Standards Framework has considerable potential to improve end-of-life care, but further work is needed to support uptake and consistency of implementation. Additional evidence about patient and carer outcomes will add to existing insights.
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High quality end-of-life care in the community is achieved with effective multidisciplinary teamwork, interprofessional communication between GPs and district nurses, and early referral of patients to district nurses. These aspects of palliative care are highlighted in the Gold Standards Framework, a programme recently established in UK primary care. To investigate the extent to which the framework influences interprofessional relationships and communication, and to compare GPs' and nurses' experiences. Qualitative interview case study. Fifteen participating practices from three primary care trusts in England. Thirty-eight semi-structured interviews were undertaken with GPs, district nurses, Macmillan nurses, and framework facilitators. Adoption of the framework often resulted in earlier referral of palliative care patients to district nurses. Multidisciplinary team meetings enabled communication for sharing knowledge, discussing management problems, and keeping colleagues informed; however, arranging and maintaining such meetings was often problematic. Nurses particularly valued formal meetings while GPs generally preferred informal ad hoc dialogue. GPs largely maintained control of the mode of multidisciplinary working. The best functioning teams used a mixture of formal and informal meetings with a relatively non-hierarchical working style. Implementing the framework enabled processes of communication associated with high quality palliative care in general practice, but there was marked variation in how this worked in individual teams. In general, hierarchical doctor-nurse relationships persisted.
Article
Background: The surprise question - "Would I be surprised if this patient died in the next 12 months?" - has been used to identify patients at high risk of death who might benefit from palliative care services. Our objective was to systematically review the performance characteristics of the surprise question in predicting death. Methods: We searched multiple electronic databases from inception to 2016 to identify studies that prospectively screened patients with the surprise question and reported on death at 6 to 18 months. We constructed models of hierarchical summary receiver operating characteristics (sROCs) to determine prognostic performance. Results: Sixteen studies (17 cohorts, 11 621 patients) met the selection criteria. For the outcome of death at 6 to 18 months, the pooled prognostic characteristics were sensitivity 67.0% (95% confidence interval [CI] 55.7%-76.7%), specificity 80.2% (73.3%-85.6%), positive likelihood ratio 3.4 (95% CI 2.8-4.1), negative likelihood ratio 0.41 (95% CI 0.32-0.54), positive predictive value 37.1% (95% CI 30.2%-44.6%) and negative predictive value 93.1% (95% CI 91.0%-94.8%). The surprise question had worse discrimination in patients with noncancer illness (area under sROC curve 0.77 [95% CI 0.73-0.81]) than in patients with cancer (area under sROC curve 0.83 [95% CI 0.79-0.87; p = 0.02 for difference]). Most studies had a moderate to high risk of bias, often because they had a low or unknown participation rate or had missing data. Interpretation: The surprise question performs poorly to modestly as a predictive tool for death, with worse performance in noncancer illness. Further studies are needed to develop accurate tools to identify patients with palliative care needs and to assess the surprise question for this purpose.
Article
Objectives: Most cancer patients want to die at home, but scaleable models to achieve this are not well researched. Our objective was to investigate the temporal association of homecare nursing, especially by generalist nurses, with reduced end-of-life hospitalizations. Methods: We conducted a retrospective Canadian cohort study of end-of-life cancer decedents during 2004-2009 in Ontario (ON), Nova Scotia (NS), and British Columbia (BC), which have homecare systems that use generalist nurses to provide end-of-life care. Each province linked administrative databases to examine the association during the last six months of life between the homecare nursing rate and the hospitalization rate in the subsequent week, using standardized definitions and controlling for other covariates. We dichotomized nursing into standard and end-of-life care intent. Results: Our cohort included 83,827 cancer decedents. Approximately 55% of decedents were older than 70 and the most common cancer was lung. Nearly 85% of the cohort had at least one hospital admission. Receiving end-of-life compared to standard homecare nursing significantly reduced a patient's hospitalization rate by 34%, 33%, and 17% in ON, BC, and NS. In the last month of life patients having a standard nursing rate of greater than five hours compared to one hour per week had a significantly lower hospitalization rate (relative reduction of 15%-23%) across the three provinces. Conclusions: Our study showed a protective effect of nursing with an end-of-life intent on hospitalization across the last six months of life and of standard nursing in the last month. This finding's generalizability is strengthened, since the trends were similar across three different homecare systems.
Palliative care: the World Health Organization's global perspective
  • C Sepulveda
  • A Marlin
  • T Yoshida
  • A Ullrich
Sepulveda C, Marlin A, Yoshida T, Ullrich A. Palliative care: the World Health Organization's global perspective. J Pain Symptom Manage 2002; 24(2): 91-96.
Handleiding ten behoeve van de implementatie van PaTz
  • B Schweitzer
  • M Duijsters
  • A Van Der Plas
Schweitzer B, Duijsters M, Van der Plas A, et al. Handleiding ten behoeve van de implementatie van PaTz. [Manual for the implementation of PaTz]. Amsterdam: Stichting PaTz, 2013.
PaTz groups for primary palliative care: reinventing cooperation between general practitioners and district nurses in palliative care: an evaluation study combining data from focus groups and a questionnaire
  • K Mahmood-Yousuf
  • D Munday
  • N King
  • J Dale
  • M Hagens
  • H R Pasman
Mahmood-Yousuf K, Munday D, King N, Dale J. Interprofessional relationships and communication in primary palliative care: Impact of the Gold Standards Framework. Br J Gen Pract 2008; DOI: https://doi.org/10.3399/bjgp08X279760. 3. van der Plas AGM, Hagens M, Pasman HR, et al. PaTz groups for primary palliative care: reinventing cooperation between general practitioners and district nurses in palliative care: an evaluation study combining data from focus groups and a questionnaire. BMC Fam Pract 2014; 15: 14.
Handleiding ten behoeve van de implementatie van PaTz
  • A Schweitzer B Duijsters M Van Der Plas