Primary palliative care research: opportunities and challenges

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Abstract

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.

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Most cited references 12

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Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death

Sarah Hoare, Zoë Morris, Michael Kelly … (2015)

Background End-of-life care policy has a focus on enabling patients to die in their preferred place; this is believed for most to be home. This review assesses patient preferences for place of death examining: the extent of unreported preferences, the importance of patient factors (place of care and health diagnosis) and who reports preferences. Methods and Findings Systematic literature review of 7 electronic databases, grey literature, backwards citations from included studies and Palliative Medicine hand search. Included studies published between 2000–2015, reporting original, quantifiable results of adult UK preferences for place of death. Of 10826 articles reviewed, 61 met the inclusion criteria. Summary charts present preferences for place of death by health diagnosis, where patients were asked and who reported the preference. These charts are recalculated to include ‘missing data,’ the views of those whose preferences were not asked, expressed or reported or absent in studies. Missing data were common. Across all health conditions when missing data were excluded the majority preference was for home: when missing data were included, it was not known what proportion of patients with cancer, non-cancer or multiple conditions preferred home. Patients, family proxies and public all expressed a majority preference for home when missing data were excluded: when included, it was not known what proportion of patients or family proxies preferred home. Where patients wished to die was related to where they were asked their preference. Missing data calculations are limited to ‘reported’ data. Conclusions It is unknown what proportion of patients prefers to die at home or elsewhere. Reported preferences for place of death often exclude the views of those with no preference or not asked: when ‘missing data’ are included, they supress the proportion of preferences for all locations. Caution should be exercised if asserting that most patients prefer to die at home.

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A systematic review of strategies used to increase recruitment of people with cancer or organ failure into clinical trials: implications for palliative care research.

Jason Boland, David Currow, Andrew Wilcock … (2015)

The challenges of palliative care clinical trial recruitment are well documented.

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Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from

Mila Petrova, Julia Riley, Julian Abel … (2016)

Background Electronic Palliative Care Coordination Systems (EPaCCS) are England's pre-eminent initiative in enabling advance care planning and improved communication and coordination at the end of life. EPaCCS have been under development for 8 years after being proposed, as Locality Registers, in the 2008 End of Life Care Strategy for England. EPaCCS are electronic registers or tools and processes for sharing data which aim to enable access to information about dying patients. Striking outcomes have been reported around EPaCCS, such as 77.8% of ‘Coordinate My Care’ patients dying in their preferred place. EPaCCS have, however, been extremely challenging to develop and implement, with many projects remaining continuously ‘under development’ or folding. They also continue to be suboptimally integrated with other data sharing initiatives. Rigorous research is non-existent. Discussion points We discuss the current EPaCCS landscape and way forward. We summarise key facts concerning the availability, uptake, outcomes and costs of EPaCCS. We outline 5 key challenges (scope of projects, unrealistic expectations set by existing guidance, the discrepancy between IT realities in healthcare and our broader lives, information governance and ‘death register’ associations) and 6 key drivers (robust concept, striking outcomes, national support and strong clinical leadership, clinician commitment, education and funding). Conclusions The priorities for advancing EPaCCS we propose include linking to other work streams and reframing the concept, potentially making it less ‘end of life’, overview of current EPaCCS and lessons learnt, continuing work on information standards, rethinking of national funding and new levels of individual and community involvement.

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Author and article information

Journal

Journal ID (nlm-ta): BMJ Support Palliat Care

Journal ID (iso-abbrev): BMJ Support Palliat Care

Journal ID (hwp): bmjspcare

Journal ID (publisher-id): bmjspcare

Title: BMJ Supportive & Palliative Care

Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )

ISSN (Print): 2045-435X

ISSN (Electronic): 2045-4368

Publication date (Print): December 2019

Publication date (Electronic): 12 February 2019

Volume: 9

Issue: 4

Pages: 468-472

Affiliations

[1 ] departmentPrimary Care Unit, Department of Public Health and Primary Care , University of Cambridge , Cambridge, UK

[2 ] departmentDepartment of Primary Care and Public Health Sciences , King's College London , London, UK

[3 ] Clinical Research Network Eastern; Primary Care , Cambridge, UK

[4 ] Cambridgeshire and Peterborough NHS Foundation Trust , Fulbourn, UK

Author notes

[Correspondence to ] Dr Stephen Barclay, Primary Care Unit, University of Cambridge, Cambridge CB2 1TN, UK; sigb2@ 123456medschl.cam.ac.uk

Author information

Stephen Barclay http://orcid.org/0000-0002-4505-7743

Article

Publisher ID: bmjspcare-2018-001653

DOI: 10.1136/bmjspcare-2018-001653

PMC ID: 6923936

PubMed ID: 30755396

SO-VID: 89d38051-400f-49ef-acd8-46edb2b83e83

License:

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

History

Date received : 03 September 2018

Date revision received : 15 December 2018

Date accepted : 16 January 2019

Funding

Funded by: FundRef http://dx.doi.org/10.13039/501100000272, National Institute for Health Research;

Award ID: PB-PG-0909-20323

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Keywords: terminal care,home care,general practice,primary care,community nursing,research methods

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Keywords: terminal care, home care, general practice, primary care, community nursing, research methods

Primary palliative care research: opportunities and challenges

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Abstract

Introduction

The study methods

The challenges addressed

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Chinese Journal of General Practice

Most cited references 12

Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death

A systematic review of strategies used to increase recruitment of people with cancer or organ failure into clinical trials: implications for palliative care research.

Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from

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