Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System

Standing, Holly; Patterson, Rebecca; Lee, Mark; Dalkin, Sonia; Lhussier, Monique; Bate, Angela; Exley, Catherine

doi:10.1136/bmjopen-2020-037483

Cited by 9 publications

(38 citation statements)

References 29 publications

(39 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Care coordination issues have previously been described in home-based and other palliative care models; 35 efforts are underway to improve electronic and other information sharing. 36 In this intervention, the impact of the specialty-based palliative care team was more salient to patients and care partners than changes in their primary neurologist. Eight hours of training may be insufficient to significantly change practice but sufficient to convince neurologists of the potential benefits of referring to and collaborating closely with specialty palliative care teams.…”

Section: Discussionmentioning

confidence: 99%

Does a novel community-based outpatient palliative care intervention for Parkinson’s disease and related disorders improve care? Qualitative results from patients and care partners

Bock,

Macchi,

Harrison

et al. 2024

Palliat Med

View full text Add to dashboard Cite

Background: Palliative care has the potential to address significant unmet needs in people with Parkinson’s disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. Aim: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson’s disease. Design: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding. Setting/Participants: Twenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinson’s disease and related disorders conducted at nine sites. Results: Benefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team. Conclusions: Clinicians caring for people with Parkinson’s disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams.

show abstract

Section: Discussionmentioning

confidence: 99%

Does a novel community-based outpatient palliative care intervention for Parkinson’s disease and related disorders improve care? Qualitative results from patients and care partners

Bock,

Macchi,

Harrison

et al. 2024

Palliat Med

View full text Add to dashboard Cite

show abstract

“…Despite the resources for advance care planning being highly variable, electronic palliative care coordination systems (EPaCCS) designed to share patient preferences between health and social care providers are increasingly being adopted in the UK healthcare system [ 33 ]. However, a growing body of evidence suggests that their benefits are limited due to the additional administrative burden they place in filling out the documentation, and the lack of interoperability with other commonly used electronic health care systems [ 33 ]. In some cases, this has led to EPaCCS systems not being accessed because of low confidence in the data quality held within the system.…”

Section: Discussionmentioning

confidence: 99%

Towards cataloguing and characterising advance care planning and end-of-life care resources

Ramirez-Valdez

Leong

et al. 2022

BMC Palliat Care

View full text Add to dashboard Cite

Background Resources for healthcare professionals, patients and those important to them relating to planning and coordinating treatment and care at the end of life are abundant, and can be difficult to navigate. However, they have not been systematically collated or catalogued in terms of their purpose, scope or intended audience. Aim To collate, categorise and characterise advance care planning and end-of-life treatment and care (EoLT + C) resources directed towards healthcare professionals, patients and their families. Methods Rapid review and thematic synthesis of resources available in the United Kingdom. Google searches and reviews of websites belonging to selected organisations that develop and publish materials relating to EoLT + C, and advance care planning were used. Materials were included if they were intended for those over 18 living in the UK and pertained to five domains of EoLT + C: identifying those approaching end of life; accessing EoLT + C services; conducting important conversations about EoLT + C and preferences; advance care planning, including recording of preferences and plans; and ensuring that plans and preferences are accessed and used by health and social care services. Results 246 resources directed at healthcare professionals, patients and their families were identified, collated, catalogued and made internationally available for clinicians, researchers, patients and the public. 61 were classified as interactive, providing decision support in EoLT + C that went beyond simply providing information. Of these, there was notable content overlap among tools for identifying patients in their last year of life. There was variation in the development of tools across all domains of end-of-life care by geography and patient group. Few interactive resources integrated seamlessly with a digital interface or healthcare provider workflows. Incentives for the adoption of best-practice appeared rare. Conclusions We present a repeatable and scalable approach to the cataloguing and characterisation of palliative care resources. The identified resources will be of benefit not only to those in the UK but to those in other countries, developing or evaluating their own resources for aiding professionals and patients to plan and deliver excellent treatment and care at the end of life.

show abstract

“…30,31 The frustrations experienced by service users when asked to repeat similar information, and professionals' concerns about lack of information can be mitigated by having an electronic care summary available to all unscheduled care services. 34 Reviews of electronic care coordination systems show that these were strongly associated with more care being delivered at home. 4 Electronic care coordination systems need to record, review and share a care plan that aligns with what matters most to our sickest patients.…”

Section: Comparison With Other Studiesmentioning

confidence: 99%

Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design

et al. 2022

View full text Add to dashboard Cite

Background: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. Aim: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. Design: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. Setting: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. Results: People who died in Scotland in 2016 ( n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. Conclusion: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.

show abstract

Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System

Cited by 9 publications

References 29 publications

Does a novel community-based outpatient palliative care intervention for Parkinson’s disease and related disorders improve care? Qualitative results from patients and care partners

Does a novel community-based outpatient palliative care intervention for Parkinson’s disease and related disorders improve care? Qualitative results from patients and care partners

Towards cataloguing and characterising advance care planning and end-of-life care resources

Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design

Contact Info

Product

Resources

About