Evaluating the integration of palliative care in national health systems: an indicator rating process with EAPC task force members to measure advanced palliative care development

Abstract Background Palliative care (PC) development cannot only be assessed from a specialized provision perspective. Recently, PC integration into other health systems has been identified as a component of specialized development. Yet, there is a lack of indicators to assess PC integration for pediatrics, long-term care facilities, primary care, volunteering and cardiology. Aim To identify and design indicators capable of exploring national-level integration of PC into the areas mentioned above. Methods A process composed of a desk literature review, consultation and semi-structured interviews with EAPC task force members and a rating process was performed to create a list of indicators for the assessment of PC integration into pediatrics, long-term care facilities, primary care, cardiology, and volunteering. The new indicators were mapped onto the four domains of the WHO Public Health Strategy. Results The literature review identified experts with whom 11 semi-structured interviews were conducted. A total of 34 new indicators were identified for national-level monitoring of palliative care integration. Ten were for pediatrics, five for primary care, six for long-term care facilities, seven for volunteering, and six for cardiology. All indicators mapped onto the WHO domains of policy and education while only pediatrics had an indicator that mapped onto the domain of services. No indicators mapped onto the domain of use of medicines. Conclusion Meaningful contributions are being made in Europe towards the integration of PC into the explored fields. These efforts should be assessed in future regional mapping studies using indicators to deliver a more complete picture of PC development.

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Palliative care integration indicators: an European regional analysis

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2021-003181 ◽

2021 ◽

pp. bmjspcare-2021-003181

Author(s):

Miguel Antonio Sánchez-Cárdenas ◽

Eduardo Garralda ◽

Natalia Sofia Arias-Casais ◽

Edgar Ricardo Benitez Sastoque ◽

Danny Van Steijn ◽

...

Keyword(s):

Primary Care ◽

Palliative Care ◽

Health Systems ◽

Long Term Care ◽

European Countries ◽

Term Care ◽

Care Level ◽

Primary Care Level ◽

Care Facilities

ObjectiveTo estimate the capacity of European countries to integrate palliative care (PC) into their health systems through PC service provision for patients of all ages, with different care needs and diseases, in various settings and by a range of providers.MethodsSecondary analysis of survey data from 51 countries with 22 indicators explored the integration of available PC resources for children, for patients of all ages, at the primary care level, for oncology and cardiac patients, and in long-term care facilities. We also measured volunteer participation. Results were quantified, converted into weighted subscores by area and combined into a single ‘Integration Capacity Score (ICS)’ for each country.ResultsThirty-eight countries reported 543 specialised paediatric PC services. One-third of all surveyed countries reported 20% or more of patients with PC needs at the primary care level. Twenty-four countries have a total of 155 designated centres that integrate oncology and PC. Eight countries were pioneering cardiology services that integrate PC. Eight reported a volunteer workforce of over 1000 and 12 had policies regulating PC provision and interventions in long-term care facilities. Across all indicators, 39 countries (76%) score from low to very low integration capacity, 8 (16%) score at an intermediate level, and 4 (8%; the Netherlands, UK, Germany and Switzerland) report a high-level integration of PC into their health systems.ConclusionVariable progress according to these indicators shows that most European countries are still in the process of integrating PC into their health systems.

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Comparing effectiveness of palliative care for elderly people in long-term care facilities in Europe (PACE)EFPC: EUROPEAN FORUM FOR PRIMARY CARE

European Journal of General Practice ◽

10.3109/13814788.2014.907782 ◽

2014 ◽

Vol 20 (2) ◽

pp. 156-156

Author(s):

Diederik Aarendonk

Keyword(s):

Primary Care ◽

Palliative Care ◽

Elderly People ◽

Long Term Care ◽

Term Care ◽

European Forum ◽

Care Facilities

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Combating Coronavirus Disease-2019 Outbreak in Long-Term Care Facilities for Frail Older Adults: Preventive Measures and Palliative Care Go Hand-in-Hand

Journal of Palliative Care ◽

10.1177/08258597211039364 ◽

2021 ◽

pp. 082585972110393

Author(s):

Hon Wai Benjamin Cheng

Keyword(s):

Palliative Care ◽

Long Term Care ◽

Care Delivery ◽

Nursing Home Residents ◽

Respiratory Illness ◽

Term Care ◽

The People ◽

Care Facilities ◽

Novel Coronavirus

While the whole population is at risk from infection with the coronavirus, older people—often frail and subject to multimorbidity—are at the highest risk for the severe and fatal disease. Despite strict infection control and social distancing measures, frail adults in long-term care facilities may be at particular risk of transmission of respiratory illness. Treatment decisions are often complex attributed to the heterogeneity of this population with regards to different geriatric domains such as functional status, comorbidity, and poly-pharmacy. While measures must be taken to prevent the novel coronavirus from spreading through these facilities, it is also essential that residents with coronavirus disease 2019 (COVID-19) have access to the symptom management and support they want and deserve. What most nursing home residents want during the course of their illness is to be able to stay in their facilities, to be surrounded by the people they love most, and to feel relief from their physical and emotional pain. By addressing the limited access to hospice and palliative care delivery in nursing homes, we can prevent unnecessary suffering and pain from COVID-19 as well as lay the groundwork for improving care for all residents moving forward.

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Advancing Palliative Care in Long Term Care Facilities (LTCFs) in Europe Within the PACE Project: An Innovative Educational and Development Intervention

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2018.10.196 ◽

2018 ◽

Vol 56 (6) ◽

pp. e70-e71

Author(s):

Sheila Payne ◽

Katherine Froggatt ◽

Jo Hockley ◽

Danni Collingridge Moore ◽

Lieve van den Block

Keyword(s):

Palliative Care ◽

Long Term Care ◽

Term Care ◽

Development Intervention ◽

Care Facilities

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Palliative care provision in long-term care facilities differs across Europe: Results of a cross-sectional study in six European countries (PACE)

Palliative Medicine ◽

10.1177/0269216319861229 ◽

2019 ◽

Vol 33 (9) ◽

pp. 1176-1188 ◽

Cited By ~ 4

Author(s):

Maud ten Koppel ◽

Bregje D Onwuteaka-Philipsen ◽

Lieve Van den Block ◽

Luc Deliens ◽

Giovanni Gambassi ◽

...

Keyword(s):

Palliative Care ◽

Advance Care Planning ◽

Long Term Care ◽

Care Planning ◽

Care Provision ◽

Cross Sectional ◽

Term Care ◽

Care Facilities ◽

Advance Care

Background: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed. Aim: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care. Design: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland. Generalized estimating equations were used for analyses. Setting/participants: Nurses or care assistants who are most involved in care for the resident. Results: We included 1298 residents in 300 facilities, of whom a majority received palliative care in most countries (England: 72.6%–Belgium: 77.9%), except in Poland (14.0%) and Italy (32.1%). Palliative care typically started within 2 weeks before death and was often provided by the treating physician (England: 75%–the Netherlands: 98.8%). A palliative care specialist was frequently involved in Belgium and Poland (57.1% and 86.7%). Residents with cancer, dementia or a contact person in their record more often received palliative care, and it started earlier for residents with whom the nurse had spoken about treatments or the preferred course of care at the end of life. Conclusion: The late initiation of palliative care (especially when advance care planning is lacking) and palliative care for residents without cancer, dementia or closely involved relatives deserve attention in all countries. Diversity in palliative care organization might be related to different levels of its development.

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CLINICAL AUDIT: QUALITY OF PALLIATIVE CARE IN LONG TERM-CARE FACILITIES IN WESTERN FRANCE, 2015

Innovation in Aging ◽

10.1093/geroni/igx004.1931 ◽

2017 ◽

Vol 1 (suppl_1) ◽

pp. 547-547

Author(s):

J. Prudhomm ◽

V. Morin-Chouarbi ◽

M. Bechac ◽

E. Menand ◽

A. Corvol ◽

...

Keyword(s):

Palliative Care ◽

Audit Quality ◽

Long Term Care ◽

Clinical Audit ◽

Term Care ◽

Care Facilities

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Dietetic Students’ Experiences: Providing Meal Assistance in Long-term Care Facilities

Canadian Journal of Dietetic Practice and Research ◽

10.3148/74.2.2013.88 ◽

2013 ◽

Vol 74 (2) ◽

pp. 88-91 ◽

Cited By ~ 6

Author(s):

Nicole Osinga ◽

Heather Keller

Keyword(s):

Long Term Care ◽

Care Home ◽

Structured Interviews ◽

Term Care ◽

Face To Face ◽

Qualitative Thematic Analysis ◽

Care Facilities ◽

Role Learning ◽

Dietetic Students

Purpose: This qualitative study involved describing the experiences of dietetic students who provided meal help to older adults. Of interest were benefits and challenges, and how training could be enhanced. Methods: Individual, face-to-face, semi-structured interviews were conducted with nine undergraduate dietetic students. In the preceding year, these students had volunteered as meal helpers in a long-term care home. Interviews were digitally recorded and transcribed verbatim. Qualitative thematic analysis was used to analyze the transcripts. Results: All participating students were female and from one undergraduate program. Three main themes emerged: growing into the role, learning outside the classroom, and providing quality assistance. Conclusions: This study provides an understanding of how meal helping can be a valuable experience for emerging dietitians. It also gives insights into training and the development of the meal helper role.

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