Written by Raechel A. Damarell, PhD Candidate, Research Centre for Palliative Care, Death and Dying.
For many people—especially those with multiple chronic conditions and the elderly—the work of navigating the health care system as well as their illnesses can be difficult. This is due partly because our current model of care continues to adhere to an increasingly outmoded ‘single disease’ approach which requires patients to have ongoing appointments with a range of different specialists, as well as their GP, with often poor inter-professional communication. The result is not only costly and wasteful for the system, but often people end up experiencing care as fragmented, disconnected, and system- rather than person-centred. Faced with complicated drug and self-care regimens with the potential for confusion, people may be at risk of adverse drug effects, unscheduled hospitalisations, and perhaps even disaffection and opt-out altogether. For patients with life-limiting illnesses who might benefit from a palliative approach, the introduction of yet another set of services to the mix may be experienced as further complication.
The push for ‘integrated care’
There are growing efforts internationally to develop ‘integrated’ models of care to address the many safety, quality, and cost-effectiveness concerns embodied in the prevailing ‘single disease’ approach. The prime goal of ‘integrated care’ is to mobilise and facilitate all the component parts and players of the system to communicate and operate together in delivering care that better aligns with the priorities and preferences of patients and their families. When this works, people experience their transit across the health system as seamless and coordinated, instead of fragmented and burdensome. (1)
What does ‘integrated’ mean for palliative care?
Integrated care principles will be of increasing importance to palliative care as our population ages and places heavier demands on existing health and social care services. (2) Most people would prefer to die at home, yet currently most die in hospital, often while subjected to unnecessary, expensive interventions. (3) Some see the solution as integrating palliative care very early in the course of a life-limiting illness, parallel with active specialist treatments, (4) in the hope that this fosters greater illness understanding and coping for patients and families as well as less aggressive clinical attitudes to care near the end of life. (5)
However, to meet the call for more home-based care at the end of life, the ‘integration’ concept will need to go further beyond the health sector to incorporate social care, (6) and community networks. The ‘compassionate communities’ movement might even take the lead on this by sensitising whole communities and society at large to see dying as an everyday part of life, thereby empowering them to take responsibility for the care of their own. (7)
Identifying best practice in integrated palliative care
To keep up with the many international developments in integrated care and the models showing promise, researchers, practitioners and policy makers require easy access to the research literature. The PubMed database is a freely available resource for finding integrated care debates, trials, and implementation and evaluation studies. The open accessibility of this resource, however, can be offset by some of the well-known challenges of searching for research on this topic. (8) As a multi-faceted concept, ‘integrated care’ lacks a universally accepted definition, tending to mean different things to different people depending on context. Some of integrated care’s core principles such as ‘patient-centred care’ and ‘multidisciplinary care’ are not exclusively associated with the concept which can frustrate attempts to locate useful information. (9)
The Integrated Care Search tool
Recognising these search challenges, several researchers from the Research Centre for Palliative Care, Death and Dying (RePaDD) recently joined with Central Coast Local Health District (NSW Health) and the International Foundation for Integrated Care (IFIC) to investigate possible solutions. Using empirical research methods, they identified the optimal combinations of terms for retrieving relevant studies on the topic of integrated care within the PubMed database. From here they developed a tool called Integrated Care Search (ICS) which enables searchers to execute PubMed searches on the topic at the simple click of a hyperlink. For a more refined focus, searchers can also combine the ICS tool with a wide range of topics of interest to integrated care, such as palliative care, frail elderly, and chronic disease.
The ICS tool is now part of the IFIC website where it is publicly available to anyone interested in the subject of integrated care. A research paper describing the tool’s development and titled ‘Integrated Care Search: development and validation of a PubMed search filter for retrieving the integrated care research evidence’ has been published in BMC Medical Research Methodology.
1. Brazil K. A call for integrated and coordinated palliative care. J Palliat Med. 2018 Jan;21(S1): S27-S29.
2. Mitchell, G. Rapidly increasing end-of-life care needs: a timely warning. BMC Med. 15(1): 126.
3. Productivity Commission. Introducing competition and informed user choice into human services: reforms to human services. Canberra, ACT: Productivity Commission; 2017.
4. Molina EH, Álvarez Rosete A, Flores SL, Uruena TP. Integrated palliative and end-of-life care. In: Amelung V, Stein V, Goodwin N, Balicer R, Nolte E, Suter E, editors. Handbook Integrated Care. Cham, Germany: Springer; 2017.
5. Temel JS, Greer JA, El-Jawahri A, Pirl W, Park E, Jackson V. et al. Effects of early integrated palliative care in patients with lung and GI cancer: a randomized clinical trial. J Clin Oncol. 2017 Mar 10;35:834-841
6. EURO-IMPACT. 2014 European Declaration on Palliative Care [Internet]. Brussels: EURO-IMPACT; 2014 [cited 2020 Feb 10]. Available from: https://www.apcp.com.pt/uploads/european_declaration_on_palliative_care_2014.pdf
7. Kellehear A. Compassionate communities: end-of-life care as everyone’s responsibility. QJM. 2013 Dec;106(12), pp.1071–1075.
8. Lewis S, Damarell RA, Tieman JJ, Trenerry C. Finding the integrated care evidence base in PubMed and beyond: a bibliometric study of the challenges. Int J Integr Care. 2018 Aug 17;18(3), p.11.
9. Damarell RA, Lewis S, Trenerry C, Tieman JJ. Integrated Care Search: development and validation of a PubMed search filter for retrieving the integrated care research evidence. BMC Med Res Methodol. 2020 Jan 21;20(1), p.12