Title: Supporting people to make decisions that are right for them: Developing a patient-directed knowledge tool to support shared decision-making for deprescribing in palliative care
Funder: Department of Health and Social Care

Abstract: Background: Deprescribing is an approach that could be used to overcome the challenges of polypharmacy, a high pill burden, and inappropriate medication use &ndash; something which is frequently reported in palliative care. It is important for any potential deprescribing approach in this context, that the decision to continue, reduce or stop a medication is shared between the patient and the healthcare professional. A shared decision involves bringing together the expertise of the patient and the expertise of the healthcare professional, and collaboratively weighing up the different options in light of both perspectives. Despite the potential benefits of shared decision-making in palliative care, there is evidence to suggest that this process does not routinely occur, and, when it does, many patients do not achieve their preferred levels of involvement in reaching a decision. To promote shared decision-making, there have been a number of patient-directed knowledge tools developed that appear to improve knowledge and increase patient involvement in decision making. As yet, however, no tool has been developed to specifically address the needs and challenges of making shared decisions about deprescribing in palliative care. Aim: To develop a patient-directed knowledge tool to promote decision-making between patient, family/close friends, and healthcare professionals, to support deprescribing in palliative care. Objectives: 1. To examine the key challenges of shared decision-making in the context of palliative care 2. To establish the needs of patients, their family/close friends, and healthcare professionals around deprescribing decisions in palliative care 3. Identify, in partnership with patients, their family/close friends, and healthcare professionals, through a co-design approach, the key requirements for a tool to promote decision-making for deprescribing in palliative care Methods: Our approach has three phases, and will be guided by published quality criteria for the development of patient-directed knowledge tools: Phase 1: a scoping review will be undertaken to establish the challenges of shared decision-making in palliative care, as well as reporting on existing patient-directed knowledge tools. Phase 2: qualitative semi-structured interviews will be undertaken with healthcare professionals involved in providing palliative care, patients in receipt of palliative care, and their family members or close friends, to establish deprescribing needs and challenges from each participant perspective. Phase 3: informed by the findings from phases 1 and 2, a series of persona scenarios will be developed that consider the different needs and challenges of deprescribing. Two co-design workshops will be undertaken: the first workshop will establish the key requirements of the tool, as well as the most appropriate tool type; the second workshop will apply the prototype tool to different persona scenarios, and use the thinking hat exercise to consider different thinking styles to refine further. Timelines for delivery: 12-months Outputs, dissemination and anticipated impact: Written summaries, aimed at both patients and healthcare professionals, highlighting key findings, including the challenges and needs of making deprescribing decisions in palliative care will be produced, alongside an academic paper describing the process of developing the patient-directed knowledge tool. We will also apply for further funding to examine the effectiveness of the tool.

Lay abstract: Palliative care is an approach that aims to control symptoms, and improve the quality of life of patients as well as their families. It is often needed when people have incurable conditions. Over 300,000 people in England need palliative care each year. When palliative care is needed, people are commonly prescribed lots of different medications, which is called polypharmacy . Polypharmacy increases the risk of developing side effects. Research also tells us that people in palliative care are often prescribed medications when the harms outweigh the benefits. This is a big problem because we also know people find taking lots of medications a burden. One potential solution to this problem is to think about ways to reduce or stop medication that is no longer doing any good or when the harms outweigh the benefits. This process is called deprescribing. In any deprescribing approach, it is important that people are supported to make decisions that are right for them &ndash; a process known as shared decision-making. Shared decision-making brings together the doctor s expertise, and what the patient feels is best for them. However, even though we know the benefits of shared decision-making, some palliative care healthcare professionals are reluctant or find it hard to engage in this process. This is where our research comes in. Our plan is to develop a tool to help promote shared decision-making between people receiving palliative care, their family members, and healthcare professionals to facilitate possible deprescribing. The project has 3 phases: for phase 1, we will review scientific studies to see what sorts of tools have been used before; for phase 2, we will interview patients with experience of palliative care, their close friends or family members, and healthcare professionals to find out their key needs in shared decision-making. And finally, for phase 3, we will hold a series of workshops with patients, their family members, and healthcare professionals to discuss the findings from phases 1 and 2. In this phase, with everybody working together, we will design a tool to promote shared decision-making about possible deprescribing in palliative care that incorporates everybody s opinions, wishes, and experiences. To develop this project, we have worked in partnership with people who have had experience of polypharmacy and deprescribing. We have also consulted with different healthcare professionals to ensure our work is relevant to people working in the NHS. Importantly, throughout the project there will be regular meetings between the research team and patient and public representatives, to make sure that the work asks the right questions and our findings are presented in a way which makes them accessible and useful to everyone interested in this project.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE