References

Rejler M, Spangeus A, Tholstrup J, Anderson-Gare B. Improved population-based care: implementing patient- and demand-directed care for inflammatory bowel disease and evaluating the redesign with a population-based registry. Qual Mgmt Hlthcare. 2007; 16:38-50
Hacking B, Wallace L, Scott S, Kosmala-Anderson J, Belkora J, McNeil A. Testing the feasibility, acceptability and effectiveness of a “decision navigaton” intervention for early stage prostate cancer patients in Scotland – a randomised controlled trial. Psych-Oncol. 2013; 22:1017-1024
Temel J, Greer J, Muzikansky A, Gallagher E, Admane S, Jackson V Early palliative care for patients with metastatic non-small cell lung cancer. N Engl J Med. 2010; 363:733-742

The francis report – the importance of person-centred health and care

From Volume 42, Issue 3, April 2015 | Pages 210-212

Authors

Shaun Maher

Strategic Advisor for Person-Centred Care and Improvement, Healthcare Quality and Strategy Directorate, The Scottish Government, St Andrews House, Regent Road, Edinburgh EH1 3DG, UK

Articles by Shaun Maher

Abstract

The relational elements of care are often described as ‘soft skills’ or ‘nice to have’ but not essential in the modern world of evidence-based healthcare. Whether intentionally or unintentionally, this type of language relegates person-centred approaches to a lower status compared to other key aspects of quality, such as safety or financial performance.

Person-centredness is a powerful underpinning philosophy that has the potential to transform the way we deliver care and support as well as enhancing the quality of services. However, our healthcare system will not become more person-centred of its own accord. Thoughtful, deliberate action is required to support this change.

Clinical Relevance: The person-centred approach is vital in achieving safe, effective, efficient care.

Article

When people think about person-centred care they often equate it with the principles of good customer service and, whilst there is some truth in this, when it comes to the world of healthcare there is much more to being person-centred than smiling and saying ‘have a nice day!’. Really good customer service comes about when the provider of the service or product has a good understanding of what provides value to their customers. If they fail to understand what provides value, then experiences and quality will be variable. These same principles apply to healthcare. Coupled with this, the common description of relational elements of care as ‘soft skills’ can demean their importance and reinforces the view of some that these skills are nice to have, but not essential. The pressure and pace of work can often cause us to lose sight of the important fact that our work is all about people, our fellow human beings. How we, and the systems we operate in, relate to the people we come into contact with is at the heart of our work and critical to its quality.

‘Yet, how much time is devoted to this vitally important topic in our undergraduate syllabuses or in the processes and structures of the organisations and systems we work in? Is there an explicit message that people and relationships matter? Have we designed processes of care that make room for people and relationships? What difference would it make?

In the introductory words of the initial report into failures at the Mid-Staffordshire NHS Foundation Trust, Sir Robert Francis stated:

‘If there is one lesson to be learnt, I suggest it is that people must always come before numbers. It is the individual experiences that lie behind statistics and benchmarks and action plans that really matter, and that is what must never be forgotten’.1

Surely this goes without saying? How did this organization miss the mark to such a degree that the fundamental relational elements of compassion, kindness and a listening ear were all but obliterated by the prevailing culture? Not only were the experiences poor, but so were the clinical outcomes. People were harmed and even died as a result of this critical system failure and toxic culture.

The reasons for this are manifold, but first and foremost is the failure of national and local leaders to focus on people. They were well intentioned, but nonetheless the system they created made it very difficult to get the focus right. Instead of designing a system for the people whom they were there to serve, they inadvertently created a system that focused on its own business. The fundamental issue here is the failure to connect with people and understand the things that really matter to them.

The Mid-Staffordshire tragedy has taught us many things, but above all it has taught us that we need to be explicit in our efforts to create a person-centred system. Deliberate, thoughtful action is required to equip staff to design prompts and processes of care that focus on people and relationships.

What is person-centred care?

Writing from a Scottish perspective, person-centred care is at the heart of the NHS Scotland Quality Strategy2 and the Routemap to the 2020 Vision.3 These two policy documents describe person-centredness as:

‘…providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide all clinical decisions’.4

Whilst there is no single definition of person-centred care, the core elements of the concept can be found in these two policy documents.

The Health Foundation has also produced a number of helpful publications which contain definitions that complement and add to the description above. In a ‘Quick Guide’ entitled ‘Person-Centred Care Made Simple’,5 the concept is described as care that is founded on the relational elements of compassion, dignity and respect, but importantly also contains three other vital elements, namely:

  • Personalization;
  • Enablement;
  • Co-ordination (Figure 1).
  • Figure 1. Co-ordination of care.

    From these definitions of person-centred care we can detect some common themes. In the former, care that is person-centred takes account of personal preferences and values and uses these to guide clinical decision-making. In the latter we also find the theme of personalization prominent, but added to this are the elements of enablement and co-ordination. Enablement directs us to think about how we can provide care, treatment or support that identifies and augments any inherent strengths and capacity in an individual to take control of his/her life and be independent. Coordination challenges us to develop services that are designed from the bottom up and take account of people in the context of their own lives, not the convenient silos in which most delivery systems currently operate.

    The NHS in Scotland has also developed a simple delivery framework from the literature highlighting five ‘Must Do’ person-centred elements.5 Whatever definitions or frameworks you use, the important point is that you need to design person-centredness into your daily work. Make time and space to understand ‘what really matters’ to the person in front of you.

    How can a person-centred approach help?

    One of the principal objections to adopting a truly person-centred approach is that there is simply not enough time. This objection may seem reasonable at first glance, especially in the current climate. This is worth exploring a little more deeply and, in doing so, we need to return to the point about good customer service being at the heart of high quality.

    Failure to understand what really matters to the people who use your service, and what provides value, at best results in variable quality, and at worst, as in the case of Mid-Staffordshire, leads to poor clinical outcomes, harm and poor financial performance. The literature supports this view. Where patient experiences are good, safety, effectiveness and financial performance are good. Where experiences are variable and poor, so are safety, effectiveness and financial performance.6 In light of this relationship, we could perhaps argue that we should always start with ‘what really matters’ and the rest will follow. The reality is perhaps that we cannot afford to neglect any of these elements and they are at least of equal importance, but perhaps person-centred approaches have been somewhat neglected until now, and therefore need some remedial attention. We cannot afford not to make time to focus on person-centred approaches to care.

    Person-centred care in action

    There are a number of exciting and innovative examples at home and abroad demonstrating the potential transformative power of this approach.

    Swedish gastroenterologist, Jorgen Tholstrup, and his team adopted a person-centred approach starting with asking whether routine return visits to the outpatient clinic following treatment were good value to patients.6 Unsurprisingly, people didn't value sitting for half a day in his late-running clinic! Amongst other interventions, the new approach simply involved a direct phone line to a senior nurse that people could call if they had any concerns or questions following treatment. The nurse would triage the calls, deal with the ones she could and refer on to medical staff those that she couldn't. The results were significant.

    By focusing on what provided value to the people using the service, capacity was released in the outpatient clinic. This in turn resulted in waiting time for referral from primary care being reduced by two-thirds from around 70 days to a little over 20 days. There was also a 50% reduction in waiting time for gastroscopy, from 18 days to 9 days. Because people were seeing a specialist more promptly, emergency admissions to the ward reduced, along with a 25% reduction in length of stay. In the new system, patients achieving set physiological improvement goals increased as well as improved quality of life and satisfaction with the service.

    In a second example, Belinda Hacking and colleagues developed a person-centred approach with a ‘navigator’ supporting people who had breast or prostate cancer through the decision-making process about treatment options.7 The intervention had a number of elements, but mainly focused on ensuring that people were primed with clear understandable information by means of a personal phone call and discussion prior to a major consultation with their oncologist. They were supported to set an agenda for the meeting based on the things that mattered to them. Immediately following the consultation with the oncologist, a recording of the conversation was provided to take away and reflect on. Participants were randomized to standard care or the navigator intervention.

    Patients who had the support of a navigator reported less regret about their decisions than the control group, but interestingly also chose less treatment, opting for less chemotherapy and less surgical intervention than the control group. Another interesting finding was that those in the navigator group who did choose intervention experienced a lower burden of side-effects than those in the control group undergoing the same treatment. The reasons for this were not explored.

    The final example is from the USA and involves people who presented with Stage IV lung carcinoma.8 There is no curative treatment with advanced disease of this nature and life expectancy is around 12 months, often much less. Standard care focuses on palliative chemotherapy and various other pharmacological interventions aimed at symptom relief.

    The intervention in this study was ‘a good conversation about the things that really matter to you’ as soon as possible after diagnosis. The technical description of the intervention was ‘early palliative care’ which involved a semi-structured conversation with the individual about his/her personal goals and fears, as well as some of the more usual aspects of care. One half of the participants in the study were assigned to standard care and the other half received the ‘what matters to you?’ conversation.

    The intervention group fared significantly better than the control group, experiencing less anxiety and depression and fewer hospital admissions. They also opted for less chemotherapy and only 16% of them died in hospital compared to a little over 30% in the control group. There is one final finding to ponder. This group of patients had less medical intervention, less time in hospital and yet they lived 25% longer than the control group – food for thought.

    Final thoughts

    These examples, and many more besides, are telling us that modern healthcare is lacking something important. When person-centredness is central to the approach, then concomitant improvements in safety, effectiveness and efficiency are manifest. It's not that we can't improve without being person-centred, but we will never be as good as we could be if we fail to recognize the benefits that this crucial element of quality can contribute.

    If ‘a good conversation about the things that matter to you’ was a drug, would we be prescribing it widely by now? Why aren't person-centred approaches mainstream?

    The Mid-Staffordshire case is a timely reminder of what can happen if we lose sight of our core purpose. There are many reasons why this can happen, but looming large is the issue of culture and the existing systems and processes of care, including the things we measure. We have taken our eye off the ball and inadvertently designed person-centredness out of the healthcare system.

    With this in mind we come to the conclusion that person-centred care is not ‘soft’ and neither is it a ‘nice to do’. It is in fact a ‘must do’. We need to take purposeful action now to re-instate people, and what matters to them, at the heart of the healthcare system.