Our Future Health: starting a conversation
To celebrate its 500-year anniversary, the RCP’s major new policy project Our Future Health is highlighting a number of health dilemmas to raise awareness of the impact on patients, the profession and the NHS. We’re identifying how doctors and the medical workforce can be supported to meet these challenges. In March, we recorded a series of podcasts that explore three such dilemmas, summarised here by RCP clinical fellow Dr Sarah-Jane Bailey. Listen in on our podcasts page: https://ourfuturehealth.rcplondon.ac.uk/resources/podcasts/
RCP president Professor Jane Dacre chaired a discussion on ‘Breaking down the taboo of death’ between Professor Bee Wee (national clinical director for end-of-life care for NHS England and consultant in palliative medicine), Dr Amy Proffitt (consultant in palliative medicine and honorary secretary to the Association for Palliative Medicine Great Britain and Ireland), and Claire Myerson (a patient with metastatic, advanced breast cancer and patient advocate member of charity Breast Cancer Care’s ChangeMakers group).
Conversations around end-of-life care are difficult for both the doctor and the patient but evidence shows that introducing the topic as early as possible in a patient’s treatment can improve patient experience1,2. Many physicians face barriers in having these conversations, due to reticence on the part of both doctor and patient, as well as time pressure. As the population ages and the proportion of patients presenting with frailty or chronic disease increases, clinicians in all specialties need to be equipped to have robust conversations about what matters to patients. This is vital in order to help them balance the treatment options available with their expectations and priorities for a good quality of life.3
For our second podcast, the RCP’s treasurer Professor Chuka Nwokolo chaired a debate on ‘Personal responsibility for health’ joined by Professor Carol Brayne (director of the Cambridge Institute for Public Health), Anita Charlesworth (director of research and economics at the Health Foundation) and Dr James Wilson (MA tutor in philosophy, politics and economics at UCL). According to The King’s Fund, funding for public health interventions has fallen by 5% in the last four years, against a background of rising rates of obesity and diabetes, and static rates of alcohol consumption. The panel discussed whether it is the individual, society, clinicians or industry who is responsible for tackling these trends.
In the third podcast, guest chair Professor Carol Brayne hosted a conversation on ‘Patient engagement in research’ between Simon Denegri (national director for patients and the public in research at the National Institute for Health Research (NIHR)) and Andrew McCracken (head of communications at National Voices, a coalition of charities committed to people being in charge of their health and care). Although there is growing commitment to patient and public involvement in research, we are a long way from patient engagement being business as usual4. Equally, engagement most frequently takes place through consultation rather than through input into design, data collection, execution and translation of research.5
Creating real partnerships
A strong theme of patient empowerment, public engagement and partnership working dominates all three of the podcasts. As clinicians, working hard – and often beyond expected limits – to keep our patients safe, we all believe we have the patient at the centre of care. However, I have come to realise that even in specialties such as geriatric medicine, where we pride ourselves in delivering holistic care, we don’t always get this right. Our medical training and clinical systems have evolved from traditional, paternalistic models and, although we have come a long way as a profession, we sometimes still fail to truly empower our patients and treat them as an equal partner in decisions about their health.
This concept was accurately described by Andrew McCracken when he and Simon Denegri discussed a tendency in research to include patient consultation as a ‘bolt-on’ or ‘tick box’ exercise after a research proposal has already been formed. How often in clinic or on your ward round do you find yourself presenting the patient with a fully formed plan for their assent, rather than talking through all the options or reasons for your recommendations? It is clear, however, that many doctors feel a lack of confidence, and this situation presents a potential training opportunity. Simon referenced enthusiastic academics who want to involve patients in their work, but who need guidance on how to become more ‘public involvement savvy’.
Simon described the work the NIHR, James Lind Alliance and others are doing to ensure patients are fundamental to the decisions they take from the very beginning of a research proposal and to ensure that healthcare professionals focus on outcomes that matter to patients. Andrew argued that in any other area of business, customer engagement is called market research and would be considered essential. Why is healthcare any different? Are patients not also customers? Both Simon and Andrew enthused that patient engagement produces better research and outcomes. However, they disagreed over whether the process increases costs or whether these could be overcome by improved efficiency. These ideas dovetail nicely with the concept of value- based healthcare, which will be discussed later on in the Our Future Health programme.
A patient perspective
Claire Myerson’s story powerfully demonstrated that living with metastatic breast cancer involves so much more than just the clinical features that we focus on as doctors. For Claire, 90% of the management of her cancer is ‘emotional and practical’. It’s not just about her either; the disease also affects her family. She talked about the power of ‘honest answers to difficult questions’. Claire knows her life expectancy is limited and although she has to cope with the uncertainty of not knowing when she will die, she finds solace in being able to plan for her future. She wants to know how treatments will impact her quality of life versus the possibility of life extension, and she wants to be supported to balance these factors before making choices. She wants to know what to expect as her health deteriorates so that she can organise how and where she will be cared for – and by whom. Claire wants to have frank conversations about how she can achieve a ‘good death’. This means something different to everyone but, for Claire, ‘it is not someone jumping up and down on my chest or giving me high doses of antibiotics to dampen down pneumonia’.
These may be conversations that palliative care teams are having on a regular basis,
but they apply to any patient with a chronic condition or, indeed, many frail older people. Yet how many physicians find the time to offer their patients the chance to ask these questions, and how many of us are equipped to answer them well? Claire said that if her final days involved being ‘napalmed’ with aggressive treatment then she would consider it a failure. Dr Proffit proposed that this change in priorities can be difficult for clinicians. We are trained to cure, and the realisation that we can’t always do this can feel like a defeat. Just because we can offer another treatment, it doesn’t always mean we should. Death is not the failure, but over-medicalising it is.
Prof Wee emphasised the therapeutic value of a compassionate conversation and called for a culture shift among the medical community and public to recognise this. Death and dying is less visible than in the past, and has become more mysterious. There is never a perfect time to discuss our priorities for the future, and these will change, so we should think about tackling the subject in a series of discussions throughout our life. Some initiatives already exist, such as Dying Matters Awareness Week, and perhaps healthcare professionals could go one step further and use these opportunities to raise the subject – both with our patients and our loved ones?
Another sense of failure experienced by clinicians is re-admitting a ‘frequent attender’, for example an alcoholic patient with decompensated liver cirrhosis who is still drinking despite advice to the contrary. These patients revolve in and out of hospital, requiring ever more expensive and invasive treatments and each time we despair that we can do less and less to help. As frustrating as this situation can be, Anita Charlesworth warned that we need to be careful not to blame such patients. When faced with extreme financial worry, family issues or mental health difficulties, quitting smoking or stopping drinking might be low on a person’s priority list. In fact, it might be the only thing providing stress relief in the absence of proper mental and physical care from an overburdened system.
Professor Brayne asked whether we need to better understand how much a patient/doctor relationship can achieve. Although we know that smoking cessation advice does work to some extent, addressing unhealthy behaviours through societal measures can be much more successful. While clinicians cannot (and would not) abdicate responsibility to advise and support patients who might want to change, they also have a role in influencing local and national policy-makers to target wider societal drivers for poor health behaviours. Anita Charlesworth also highlighted the role of clinicians in creating an evidence base to empower the public to make informed choices. Dr Wilson emphasised the importance of involving patients and the public in public health initiatives, rather than alienating them by imposing paternalistic rules.
The podcasts call for physicians to work in partnership with patients both for individual care planning and to engage them more broadly in service and research design. I have walked in the shoes of the doctor, the patient and the relative and have reflected on a mysterious transformation that occurs in the consulting room. Normally assertive individuals, entirely capable of managing complex problems, can suddenly become deferential and overpowered by the well- meaning healthcare professional in front of them. There will be many potential reasons for this but, as clinicians, it is our job to make the patient feel at ease, give the power back to them and draw on their expertise in their own condition and life6. Only the patient can know how the two interact and identify the goals, priorities and outcomes that matter to them7. Claire agreed: ‘How can you know what hope is for me in my world? You can only know by asking me and talking and listening.’ As clinicians, we need to be more honest about the limits of medicine and the reality of death and dying.
Where do we go from here? Simon Denegri was keen to see public involvement integrated into how we define research excellence. Andrew McCracken celebrated the advances in the scientific community, but challenged the slower progress made in engaging patients in planning new models of care. Claire Myerson asked the RCP to role model conversations about advance care planning and death, so that junior and senior clinicians alike can learn what good looks like. Dr Proffit called for better cross-sector working as offering patients support at the end of life is everybody’s business. Professor Wee challenged us to disseminate the message that a therapeutic conversation can be as, and more, valuable than reaching for the prescription pad. Meanwhile Anita Charlesworth, Dr Wilson and Professor Brayne left us pondering how best to tackle the health inequalities which influence poor health behaviours and recommended we do this as a system with public engagement at the core of any campaign.
Visit http://ourfuturehealth.rcplondon.ac.uk and join the conversation on Twitter by following @RCPFuture and #ourfuturehealth. As our members and fellows, we want to hear your responses to the issues raised in these recordings, your opinions on how we can tackle these dilemmas and any examples of best practice you have to share. There will also be more events, blogs, and podcasts to debate as the year progresses!
1. The Gold Standards framework. Advance care planning 2013. www.goldstandardsframework.org.uk/advance-care-planning.
2. Mullick A, Martin J, Sallnow L. An introduction to advance care planning in practice. BMJ 2013;347:f6064.
3. National Palliative and End of Life Care Partnership. Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020. http://endo ifecareambitions.org.uk/wp-content/ uploads/2015/09/Ambitions-for-Palliative-and-End-of-Life-Care.pdf
4. Staniszewska S, Denegri S. Patient and public involvement in research: future challenges. Evidence-Based Nursing 2013;16:69. 5. Garfield S, Jheeta S, Jacklin A et al. Patient and public involvement in data collection for health services research: a descriptive study. Research Involvement and Engagement 2015;1:8. 6. NHS England. House of Care – a framework for long term condition care.www.england.nhs.uk/ourwork/ltc-op-eolc/ ltc-eolc/house-of-care 7. Coalition for collaborative care. Our Vision for the Future. 2014. http://coalitionforcollaborativecare.org.uk/wp- content/uploads/2014/11/C4CC_210x297_ nal_pages.pdf