Inappropriate treatment at the end of life: a systematic review of qualitative evidence

Theo Lorenc, Gary Raine, Claire Khouja, Rebecca Rees, Kate Hinds, Kath Wright, Amanda Sowden, Katy Sutcliffe, James Thomas

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Population ageing is increasingly putting pressure on health and social care services towards the end of people’s lives. However, a body of evidence identifies that a significant proportion of medical treatments given at the end of life in hospital may be inappropriate because they are non-beneficial. Failure to provide beneficial treatment is also a concern. This over- and undertreatment may lead to less than optimal care for patients near the end of life. The Department of Health and Social Care for England commissioned this systematic review of research evidence to explore potential explanations for the occurrence of over- and undertreatment. The review focuses in particular on patient, family and clinician views about influential factors. Strategy documents to support high quality end of life care have been produced by various national bodies. The UK Department of Health’s 2008 End of Life Care Strategy was one of the first produced by a national government. Along with other steps, the strategy emphasised that clinicians should discuss end of life care with patients as the
end approaches, assess needs and plan care. They should also review these plans regularly, coordinate care and deliver high quality services. In 2016, in response to a review of the 2008 strategy, the government committed to ensuring that every person nearing the end of their life should receive attentive, high quality, compassionate care, so that their pain is eased, their spirits lifted and their wishes for their closing weeks, days and hours are respected.
Progress with end of life care in the UK since the 2008 strategy has been questioned and it appears that much is still to be done. Despite an increased focus on Advance Care Plans and Statements, many patients in end of life situations in the UK and elsewhere are still unlikely to have such a plan. Furthermore, the ageing of populations in many countries is expected to put increasing pressure on health and social care services, both in hospital and other care settings. For the purposes of this review, inappropriate treatment is used as a catch-all term to refer both to overtreatment (delivery of treatments which are unlikely to be beneficial, in particular aggressive treatment with limited impact on survival or future quality of life) and undertreatment (failure to deliver beneficial treatments, for example, for pain or other symptoms).
We searched eight electronic databases and included any qualitative study focusing on over- or undertreatment for patients at or near the end of life. We conducted a thematic synthesis of the data. We assessed study reliability using a standardised tool and excluded less reliable studies from the synthesis. The synthesis was structured using the idea of influencing factors operating at different socio-economic levels. Themes were developed using findings from all the studies, but needed to be supported by at least two studies that were relatively recent (published within the last ten years) and from an OECD country (to help findings have greater relevance to a UK policy context).
Twenty-nine studies were included in the synthesis. Twenty five studies collect views from clinicians, often (n=14) from those working in intensive care; four collect views from either patients (n=2) or carers (n=2). Just under half of the studies were conducted in the USA and only three studies contain findings from the UK. The kinds of patients being discussed by clinicians are often not described, but they include those who have been receiving treatment for cancer, who have end-stage or chronic kidney disease, or are comatose survivors of cardiac arrest. In terms of the life-span, two studies of clinicians’ views limit their study to care for older patients, and two are focused on end of life treatments for children. The themes identified through synthesis of these studies are outlined below. This review finds that inappropriate treatment, particularly overtreatment, at the end of life is recognised as a problem by patients and family members and as a substantial problem by many clinicians. Overtreatment is seen by clinicians as including treatments which do not improve quality of life, or where the benefit is outweighed by the suffering produced. This is seen to have negative consequences in terms of avoidable suffering for patients and distress for clinicians. However, it is recognised that judgements of what constitutes overtreatment are challenging to make in practice, and cannot be fully objective. A range of factors are seen as contributing to overtreatment. Views from patients or families focus on interpersonal and individual influences related to attempts to minimise suffering in a context of uncertainty. Clinicians refer to societal and organisational influences, as well as factors that are interpersonal and individual in nature. Their accounts also show how these influences can be interlinked. Clinicians report that they are sometimes unwilling to limit treatment due to their professional culture and sense of their own role, and see more palliative approaches to care as an admission of defeat. However, they are also aware
of their own responsibility for life-and-death decisions, and aware of the limits to clinical knowledge, so that they can almost never rule out the possibility of recovery with total certainty. Some clinicians are also reluctant to limit treatment due to possible legal repercussions. They may also continue treatment which they know to be futile for a few days to allow family members to come to terms with the patient’s imminent death. Doctors describe how they can have limited contact with patients due to their caseloads, and how nurses (who are closer to the patient and more aware of the negative impacts of continued treatment) can have limited input into decision-making. Patients with complex needs are often treated by multiple specialists, focusing on specific problems rather than overall quality of life, which can create a ‘treadmill’ effect whereby aggressive treatment creates a demand for more treatment further along the pathway. The Intensive Care Unit (ICU) is identified as a particular site for futile treatment. The decision to limit or withdraw treatment requires communication with patients and
families, which is both personally uncomfortable and time-consuming for clinicians. It is recounted how inaccurate information or vague communication may leave patients or families little choice but to request continued treatment. Clinicians report how patients and family members may be unwilling to give up hope, even when they recommend limiting treatment, and describe limits to understanding about the implications of continuing with treatment, or the probability of recovery. Several of the same themes recur as potential causes of undertreatment (although the data is very limited). In particular, inadequate communication or limited contact between clinicians and patients may lead to poor pain management or early withdrawal of treatment. It is important to recognise that the very limited data available on patients’ and family members’ own views means that this synthesis represents, in the main, the views of
clinicians about inappropriate treatment at the end of life.
Original languageEnglish
Place of PublicationLondon
PublisherEPPI-Centre, Social Science Research Unit, UCL Institute of Education, University College London.
Commissioning bodyDepartment of Health and Social Care
ISBN (Electronic)9781911605270
Publication statusPublished - Dec 2021

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