Sharing decisions and planning care, including at the end of life

Professor Alf Collins, Professor Jonathan Silverman and Dr Andrew McDonald’s blog on the three compelling reasons why we should focus on improving communication between patients and healthcare professionals, following the recent publication of Goals of Care.

 National survey data tells us that patients want more support to help them manage their health and wellbeing, and they want to be more involved in decisions about their health and care. We also know that shared decision making is an ethical and legal imperative for clinicians.  This should be happening routinely, however, we still have a way to go before we achieve this universally.

Many clinicians think they are already sharing decisions with patients, and healthcare leaders are often sceptical about the evidence base. Until recently, there has been very little training available for clinicians or teams who want to learn more about shared decision making in order to put the skills into daily practice.

Yet we know that helping health professionals in their communication with patients can lead to profound improvements in the quality of care. The use of specific communication skills leads to improved patient experience and outcomes and enhances health professional satisfaction. We also know unequivocally that communication skills can be learnt, developed and retained.

We think there are three compelling reasons why now is the time to significantly and comprehensively improve communication between patients and healthcare professionals:

1. Consent for surgery and surgical waiting times

Thanks to the Montgomery ruling at the Supreme Court, it is accepted that shared decision making with regard to surgical procedures is fundamental to good clinical practice. Recent General Medical Council guidance reinforces this view.

In the wake of COVID-19, there will be pressure on surgical waiting times for some time to come.  It is critically important that all patients who enter an NHS waiting list only do so having shared a decision about surgery. This means they should be given unbiased information that is sensitive to their level of health literacy and that describes all evidence-based options available to them (including surgery), together with an understanding of the benefits and harms of those options. Patients should be afforded time and expert support to come to a decision that’s right for them, based on their values and preferences.

Shared decision making should be taking place in surgical pathways not just at the time of consent (when, almost by definition, the decision is pre-determined), but in all conversations across the pathway of care.

2. A new national training resource

To help clinicians develop their communication skills, NHS England and NHS Improvement recently commissioned the Personalised Care Institute (PCI), hosted by the Royal College of General Practitioners, to develop new e-learning and curate existing e-learning. The PCI also quality assures face-to-face training in communication skills, with an emphasis on shared decision making, personalised care and support planning and health coaching. This is a commitment in Universal Personalised Care, which aims to train 75,000 healthcare professionals by 2023/24, and that is just the beginning.

3. A further compelling case for change

Whilst we have described a case for change in Universal Personalised Care, the recent publication of Goals of Care has further reinforced the importance of good communication between clinicians and patients.

This work started following the 2016’s Marie Curie report “The Long and Winding Road”. The report author, Dr Andrew McDonald, was a senior civil servant who had developed both severe Parkinson’s disease and metastatic prostatic cancer. In his journeys through the NHS, he experienced both the best and worst of clinical communication and felt compelled to improve the system. The report shows how all NHS reform plans of the last 25 years had a commitment to better communication between healthcare professionals and patients and yet this had not been translated into sustained comprehensive action. It made the case that improving healthcare communication can improve the quality of patient care and reduce its cost.

NHS England and NHS Improvement responded by commissioning an evidence review focusing on those interventions that result in improvements in patient experience and outcomes and which also reduce financial demands on the health system. The report demonstrates that the evidence for achieving improvements in care and a reduction in overall expenditure to the NHS is most compelling in interventions relating to end-of-life care. It recommends training in shared decision making or ‘goals of care’ conversations with patients presenting in acute medical and surgical assessment units who are at significant risk of dying in the next 12 months.

These conversations, held within 48 hours of admission, involve providing patients with information about their condition and treatment options, and giving them the opportunity to have their values, goals, priorities and preferences heard and recorded by staff. This is not easy, and clinicians often battle with sensitive discussions around prognostic uncertainty or about balancing duration and quality of life whilst feeling ill-prepared and under-confident. However, the evidence is clear; such conversations are highly valued by patients and professionals alike and can mean patients experience less invasive treatments in the last year of their life. The precise level of financial savings to be realised is uncertain, however it seems likely that savings will be substantial.

Whilst the provision of compassionate, personalised care has always been a goal for the NHS, we now have a clear case for change, an underpinning evidence base and a supportive and compelling policy direction. The time to act is now.

For more information, see Goals of Care, and visit the Personalised Care Institute.

Alf Collins

Professor Alf Collins is NHS England’s Clinical Director, Personalised Care Group.

He was a community consultant in pain management and in parallel worked for a decade with the Health Foundation. He has researched and published widely on self-management support, shared decision making, care planning, co-production, patient activation and patient engagement.

He has honorary fellowships from the Royal College of Physicians and the Royal College of General Practitioners and is a Visiting Professor at Coventry University.

Photograph of Jonathan Silverman

Jonathan Silverman is Honorary Professor of Academic General Practice at Deakin University, Australia and was previously Associate Clinical Dean at the School of Clinical Medicine, University of Cambridge. He has been actively involved in teaching communication skills since 1988 and in 1999 became Director of Communication Studies for the undergraduate curriculum in the University of Cambridge, which involves over 1000 half day small group sessions per year.

He is best known as one of the authors of the Calgary-Cambridge Guides to the Medical Interview, which provide a framework for describing the medical interview and establishing a comprehensive set of skills referenced to the current evidence. He has also co-authored two companion books with Suzanne Kurtz and Julie Draper, “Teaching and Learning Communication Skills in Medicine” (Radcliffe Publishing Second Edition 2005) and “Skills for Communicating with Patients” (Radcliffe Publishing Third Edition 2013). In 2005, he founded the UK Council for Communication Skills Teaching for all 33 UK medical schools and is a Past-President of EACH: International Association for Communication in Healthcare. In 2015, he was awarded the Lynn Payer award ‘for outstanding contributions to the literature on the theory, practice and teaching of effective health care communication and related skills’ from the American Academy of Communication in Healthcare.

Photograph of Dr Andrew McDonald

Dr Andrew McDonald is a writer and a campaigner. He was born in 1962 and spent most of his career as a civil servant, initially working in the National Archives and, subsequently, in the Cabinet Office and Ministry of Justice. His last executive role was as Chief Executive of the Independent Parliamentary Standards Authority, the regulator established to tackle MPs’ expenses crisis. He took medical retirement in 2014. Andrew’s work as a campaigner has primarily concerned the rights of patients and of disabled people. This work has been sparked by his own diagnosis with Parkinson’s (2007) and prostate cancer (2010). Andrew was chair of the pan-disability charity Scope from 2014 to 2019, overseeing the development of its radical new strategy and reforming its governance. He has spoken publicly about his experience of disability, including the shortcomings of the benefits system. Andrew has chaired the patient advocacy group Chapter 2 since 2015. This has concerned itself with improving the quality of communications with patients. This has been an important theme for Andrew for the last decade. He lectured on this in 2014 and 2016, writing the report The Long and Winding Road, which argued that investment in the communication skills of healthcare professionals was likely to save costs and improve the patient experience. Since 2017 he has been working with NHS England on implementation of these ideas. He is convenor of the Chapter Two Group.