“A palliative end-stage COPD patient does not exist”: a qualitative study of barriers to and facilitators for early integration of palliative home care for end-stage COPD

Scheerens, Charlotte; Deliëns, Luc; Belle, Simon Van; Joos, Guy; Pype, Peter; Chambaere, Kenneth

doi:10.1038/s41533-018-0091-9

Cited by 24 publications

(28 citation statements)

References 42 publications

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“…Research on health professional knowledge, attitudes and beliefs suggests that barriers to Specialist Palliative Care access for people with COPD may stem from difficulties with prognosticating and a commensurate reluctance to discuss end-of-life care for fear of undermining hope. 50,51 While both COPD and lung cancer are life-limiting, mean survival time from diagnosis is approximately five times longer for people with COPD. 29 Symptoms may emerge, present and be interpreted differently for each disease during their respective trajectories.…”

Section: Discussionmentioning

confidence: 99%

A systematic review and meta-analysis of studies comparing burden from lung cancer and chronic obstructive pulmonary disease

Luckett

Martin²,

Currow

et al. 2020

Palliat Med

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Background: Chronic obstructive pulmonary disease and lung cancer are both life-limiting diseases that confer burden in the form of symptoms and affect functioning and quality of life. Comparing burden between these diseases is of interest to determine whether people with chronic obstructive pulmonary disease require improved access to Specialist Palliative Care. Access should be based on needs rather than diagnosis or prognosis but is limited for people with chronic obstructive pulmonary disease compared to lung cancer. Aim: The aim of this study was to synthesise research comparing burden from chronic obstructive pulmonary disease and lung cancer to estimate relative need for Specialist Palliative Care. Design: A systematic review was conducted of observational quantitative studies published in English peer-reviewed journals comparing burden from chronic obstructive pulmonary disease and lung cancer (PROSPERO CRD42018108819). No limits were placed on disease stage. Meta-analyses were performed where studies used the same measure; otherwise, synthesis used a narrative approach. Risk of bias was assessed using the Agency for Healthcare Research and Quality tool. Data sources: Electronic databases were searched in September 2019. Results: Of 790 articles returned, 13 were included, reporting 11 studies. Risk of bias was generally moderate. Except for pain, burden tended to be at least as substantial from chronic obstructive pulmonary disease as from lung cancer, with breathlessness and impacts on functioning being significantly worse. Longitudinal studies suggest that people with chronic obstructive pulmonary disease live with burden for longer. Conclusion: Efforts should be made to ensure that access to Specialist Palliative Care is commensurate with chronic obstructive pulmonary disease’s substantial and long-lasting burden. Future research should clarify whether managing burden in chronic obstructive pulmonary disease and lung cancer requires different approaches.

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Section: Discussionmentioning

confidence: 99%

A systematic review and meta-analysis of studies comparing burden from lung cancer and chronic obstructive pulmonary disease

Luckett

Martin²,

Currow

et al. 2020

Palliat Med

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“…The categories of facilitators were (1) Trigger moments to start talking about early integration of PHC such as after hospitalisation, after a couple of exacerbations, when an end-stage COPD patient becomes oxygen-dependent or becomes housebound; (2) Involvement of informal caregivers in early integrated PHC for COPD; (3) Information about the advantages of early integrated PHC for end-stage COPD in professional caregivers’ education; (4) Including advance care planning as a part of healthcare and PHC systems and (5) Communication: enhancing communication between professional caregivers by installing a care coordinator, and between professional caregivers and end-stage COPD patients by explaining better and in a practical way early integrated PHC. The elaborate results are published elsewhere[ 29 ].…”

Section: Resultsmentioning

confidence: 99%

“…This method complemented the previous methods with information about the specific Flemish context of the intervention. The methods of the focus groups are published elsewhere[ 29 ].…”

Section: Methodsmentioning

confidence: 99%

Development of a complex intervention for early integration of palliative home care into standard care for end-stage COPD patients: A Phase 0–I study

et al. 2018

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BackgroundResearch suggests that palliative home care should be integrated early into standard care for end-stage COPD patients. Patients also express the wish to be cared for and to die at home. However, a practice model for early integration of palliative home care (PHC) into standard care for end-stage COPD has not been fully developed.AimTo develop an intervention for early integration of PHC into standard care for end-stage COPD patients.MethodsWe conducted a Phase 0–I study according to the Medical Research Council Framework for the development of complex interventions. Phase 0 aimed to identify the inclusion criteria and key components of the intervention by way of an explorative literature search of interventions, expert consultations, and seven focus groups with general practitioners and community nurses on perceived barriers to and facilitators of early integrated PHC for COPD. In Phase 1, the intervention, its inclusion criteria and its components were developed and further refined by an expert panel and two expert opinions.ResultsPhase 0 resulted in identification of inclusion criteria and components from existing interventions, and barriers to and facilitators of early integration of PHC for end-stage COPD. Based on these findings, a nurse-led intervention was developed in Phase I consisting of training for PHC nurses in symptom recognition and physical therapy exercises for end-stage COPD, regular visits by PHC nurses at the patients’ homes, two information leaflets on self-management, a semi-structured protocol and follow-up plan to record the outcomes of the home visits, and integration of care by enabling collaboration and communication between home and hospital-based professional caregivers.ConclusionThis Phase 0-I trial succeeded in developing a complex intervention for early integration of PHC for end-stage COPD. The use of three methods in Phase 0 gave reliable data on which to base inclusion criteria and components of the intervention. The preliminary effectiveness, feasibility and acceptability of the intervention will be subsequently tested in a Phase II study.

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“…There are also several non-acute moments at a geriatric department in which ACP could be initiated or continued. A recent ED visit or hospitalization can be a trigger and reference to initiate ACP conversations [47] as referring to this recent situation makes the discussion more tangible. Moreover, geriatricians are experts when it comes to frailty and comorbidity.…”

Section: Implications For Research And/or Practicementioning

confidence: 99%

Life-sustaining treatment preferences in older patients when referred to the emergency department for acute geriatric assessment: a descriptive study in a Dutch hospital

et al. 2021

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Background In many cases, life-sustaining treatment preferences are not timely discussed with older patients. Advance care planning (ACP) offers medical professionals an opportunity to discuss patients’ preferences. We assessed how often these preferences were known when older patients were referred to the emergency department (ED) for an acute geriatric assessment. Methods We conducted a descriptive study on patients referred to the ED for an acute geriatric assessment in a Dutch hospital. Patients were referred by general practitioners (GPs), or in the case of nursing home residents, by elderly care physicians. The referring physician was asked if preferences regarding life-sustaining treatments were known. The primary outcome was the number of patients for whom preferences were known. Secondary outcomes included which preferences, and which variables predict known preferences. Results Between 2015 and 2017, 348 patients were included in our study. At least one preference regarding life-sustaining treatments was known at referral in 45.4% (158/348) cases. In these cases, cardiopulmonary resuscitation (CPR) policy was always included. Preferences regarding invasive ventilation policy and ICU admission were known in 17% (59/348) and 10.3% (36/348) of the cases respectively. Known preferences were more frequent in cases referred by the elderly care physician than the GP (P < 0.001). Conclusions In less than half the patients, at least one preference regarding life-sustaining treatments was known at the time of referral to the ED for an acute geriatric assessment; in most cases it concerned CPR policy. We recommend optimizing ACP conversations in a non-acute setting to provide more appropriate, desired, and personalized care to older patients referred to the ED.

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“A palliative end-stage COPD patient does not exist”: a qualitative study of barriers to and facilitators for early integration of palliative home care for end-stage COPD

Cited by 24 publications

References 42 publications

A systematic review and meta-analysis of studies comparing burden from lung cancer and chronic obstructive pulmonary disease

A systematic review and meta-analysis of studies comparing burden from lung cancer and chronic obstructive pulmonary disease

Development of a complex intervention for early integration of palliative home care into standard care for end-stage COPD patients: A Phase 0–I study

Life-sustaining treatment preferences in older patients when referred to the emergency department for acute geriatric assessment: a descriptive study in a Dutch hospital

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