I am fortunate to have worked across research and health care on three continents, in roles ranging from basic research to health economics, and from perspectives ranging from academia and government agency, to commercial consultancy. All of these positions, while diverse, were linked through the common need for reliable evidence to inform decisions. Recently I joined CareSearch where we provide trustworthy evidence-based information on issues relevant to end-of-life and palliative care. CareSearch resources are relevant across the lifespan, across the system, and irrespective of a person’s role. Through palliAGED, CareSearch provides this information and guidance specifically in the context of the older person.
But why does evidence matter at the end-of-life?
Palliative care provides support to people with a life-limiting illness for whom decisions may need to be made about ongoing active treatment, ending treatment, the place of care, and approaches to providing relief and respite for patients and their carers. As an illness progresses preferences and options may change and new decisions need to be made. In health care the role of evidence in informing decisions is recognised by health care practitioners and providers, and relates to understanding the balance between the potential benefits and harms of any practice, treatment or intervention. It can provide an insight into the most likely outcome of an approach to care across a population. The impact of care backed by the best available evidence might be measured against symptom control, quality of care, quality of life, and cost. Sometimes money can be saved, for example when low value care is eliminated or hospital admissions avoided. It can also serve to highlight where increased investment and services are needed to improve standards of care and patient quality of life. Therefore, evidence matters because what we have always done is not always the best we could do.
Evidence informs decisions but it does not operate in isolation. Evidence from randomised controlled trials is often acclaimed as the gold standard. Yet it is sobering to note that older people and those with more than one co-existing condition (multimorbidities) are often excluded.[1,2] Practitioners and specialists caring for under-represented people are likely to have real-world experience and knowledge that can in part address this gap, and together with the evidence gives us confidence in decisions made at the individual level. With the move towards person-centred care, the preferences and values of patients combine with this evidence and expert opinion to guide appropriate decision making. When a person also has the power to decide where health care dollars are spent, their voice in those conversations is likely to increase, as does their need to be fully informed about the choices they make. Evidence is everyone’s business because we all have a role in decision making that guides us towards appropriate, affordable quality care - including end-of-life care.
A systematic review of education provided to patients with advanced cancer found significant improvement in carer quality of life and patient symptom management, but no improvement in patient quality of life or pain control, and resource use was unchanged.  The need for information varies, with some people preferring that experts make decisions on their behalf, whereas others want to be more involved and informed. Information needs of patients and carers often differ. When and how information is needed also differs from one person to the next.
Thanks to the internet, information is readily available at any time - including information that was once largely confined to medical school libraries. Today patients can, and often do, become ‘experts’ in their own health. They can research in detail what is known about their illness, and combine this with their personal history and responses to treatment. But not all information on the internet is based on evidence. While some people will become informed others will be misinformed. Expectations might be unrealistic and of themselves a source of added stress. Distinguishing between evidence and opinion, or assessing the relevance of evidence based on dissimilar experiences is not easy. Independent sources of relevant information underpinned by evidence and transparent quality processes provide an important resource for members of the general public and health practitioners alike.
Independent, critical appraisal and synthesis of this evidence into reliable, practical guidance for recipients and providers of care is one part of appropriate care. This also reduces demands on busy practitioners to keep up with an often overwhelming volume of new research evidence. Facilitating recipient and provider discussions of care is key to appropriate decision-making and I am pleased to be part of that process through my role at CareSearch. The value of evidence is evident when it is both trusted and the audience sees or understands the impact it has on real events. By synthesising evidence into useful formats and plain language while maintaining research integrity and transparency, CareSearch is helping to make evidence evident.
- McMurdo M. Clinical research must include more older people. BMJ. 2013 Jun 21;346:f3899. doi: 10.1136/bmj.f3899.
- Bourgeois FT, Orenstein L, Ballakur S, Mandl KD, Ioannidis J. Exclusion of elderly people from randomized clinical trials of drugs for ischemic heart disease. J Am Geriatr Soc. 2017 Nov;65(11):2354-2361. doi: 10.1111/jgs.14833. Epub 2017 Mar 17.
- Nevis I. Educational intervention in end-of-life care: an evidence-based analysis. Ont Health Technol Assess Ser. 2014 Dec 1;14(17):1-30. eCollection 2014.
A guest blog post by Dr Katrina Erny-Albrecht, Senior Research Fellow, CareSearch, Flinders University