What do we want to know?
This review addresses the following question: what is known from qualitative research about the views or experiences of patients, clinicians, families or other stakeholders regarding under- and overtreatment at the end of life?
Who wants to know and why?
This systematic review provides policy-makers and people involved in delivering end-of-life care with an overview of what is known about the perceptions and attitudes of patients, healthcare workers and families. The focus on qualitative evidence can help us to understand what problems may be encountered in trying to improve end-of-life care and reduce inappropriate treatment.
What did we find?
Most of the evidence relates to the views of clinicians rather than those of patients or family members, and to overtreatment rather than undertreatment. Many clinicians believe that overtreatment, at the end of life is common and is a potential harm to patients, as well as a misuse of resources. However, the question of whether treatment is inappropriate is a matter of judgement: the view that a given course of action is over- or undertreatment is often open to debate, and predicting individual patient outcomes is fraught with uncertainty.
Overtreatment is seen as a source of needless suffering for patients, as well as distress for clinicians and for family members. Clinicians identify a number of potential reasons why patients may be overtreated. Clinicians’ professional ethos may predispose them to aggressive treatment choices, and they may often fear legal liability if they choose more conservative treatments. Patients’ treatment pathways may create demand for further treatments which clinicians feel unable to go against.
Views differ between different groups of clinicians: commonly, nurses report that doctors are more prone to overtreatment, and believe that doctors do not have time to understand patients’ situations. Clinicians find communicating with patients and families about treatment goals challenging, particularly where it involves facing up to the possibility of death, and may not discuss the options for limiting treatment for this reason. They are aware of the limits of their own knowledge and the possibility that patients may make an unexpected recovery; however, they also report that patients and families sometimes have unrealistic expectations of treatment.
The reasons why patients may be undertreated, particularly for pain, are broadly similar, including issues of communication between clinicians, patients and families. However, as noted, we located relatively few studies on undertreatment.
What are the implications?
The findings suggest that clinicians’ workloads and time pressures may be a reason for the communication problems which contribute to inappropriate treatment. Issues of coordination between clinicians and teams, and a lack of joined-up care, may exacerbate these problems. While many clinicians see patient and family demands as a major driver of overtreatment, this is not supported by the (limited) data from patients and families themselves, suggesting that more effective communication and care planning might help to reduce conflict.
Potential areas of intervention might include professional cultures which bias clinicians towards aggressive treatment, and clinicians’ discomfort with discussing the possibility of death.
How did we get these results?
We conducted a systematic review of qualitative studies which reported data on perceptions of inappropriate treatment in the context of end-of-life care. Twenty-nine studies were included in the review and the data from these studies were synthesised thematically.
This report should be cited as:
Lorenc T, Raine G, Khouja C, Rees R, Hinds K, Wright K, Sowden A, Sutcliffe K, Thomas J (2021) Inappropriate treatment at the end of life: a systematic review of qualitative evidence London: EPPI Centre, UCL Social Research Institute, UCL Institute of Education, University College London.
(The original file omitted an acknowledgement of the Alzheimer’s Society Research Network for contributing material for the review team to consider. This has now been added and the corrected file is now linked above and marked with ‘-V2.pdf’ in the filename, this correction was made on 09/02/22 at 12.00pm GMT.)