FAQs

Frequently asked questions about The Serious Illness Care Programme UK

Please click on any of the frequently asked questions below to see the associated answer.

1

What is the Serious Illness Care Programme UK?

The Serious Illness Care Programme UK aims to transform the patient experience and enhance clinical care and support for people with serious illnesses.

It is a partnership led by The Clatterbridge Cancer Centre NHS Foundation Trust (Merseyside, UK), with The Marie Cure Palliative Care Institute Liverpool (University of Liverpool, UK) and Ariadne Labs (Boston, USA).

The programme is based on the pioneering work of Dr Atul Gawande and his team at Ariadne Labs in Boston, USA, who are global leaders in improving surgical and childbirth care.

They have been developing the serious illness conversation programme with good results in the US and it is demonstrating that structured, meaningful conversations about a patient’s goals and priorities enhances their experience of care, quality of life, and sense of control, as well as reducing depression and anxiety.

2

Which patients are eligible?

Patients who are diagnosed with a serious, life-limiting illness will be eligible to benefit from the programme.

Initially this will be in the pilot sites, with careful monitoring, evaluation and research guiding the wider roll-out of the programme across the UK.

3

What is the evidence base for the Serious Illness Care Programme – how do we know it is good for patients?

There is good research evidence from the USA that the Serious Illness Care Programme leads to conversations that are beneficial to patients, because they are of better quality, happen more often and happen earlier in a patient’s treatment.

Research in the USA shows that 86% of patients say they benefit from the meaningful conversations they have with clinicians and that over 90% of clinicians who have taken part have changed their behaviour to adopt the process as part of their everyday clinical practice.

The programme is based on Ariadne Labs’ pioneering work in the US, which is demonstrating that meaningful conversations about a patient’s goals and priorities enhances their experience of care, quality of life, and sense of control, as well as reducing depression and anxiety.

Our mission in the UK programme is to improve the lives and personalise the care of all people with serious illness through meaningful conversations about their goals and priorities.

That is why we say the programme is, in simplest terms, about, “Better Conversations, Better Care”.

Comprehensive information about the evidence base for this intervention is available on the UK website (www.betterconversations.org.uk). Below is a brief summary of key findings from studies in the US at the Dana-Farber Cancer institute:

A cluster-randomized controlled trial involving 391 patients, 330 family members, and 90 clinicians in outpatient oncology. Preliminary data demonstrate strong positive impact of the programme:

  • Over 90% of clinicians who have taken part have changed their behaviour to adopt the process.
  • A significantly higher proportion of patients in the intervention group have at least one conversation compared with the control group. 
  • The conversations take place 3 months earlier, focusing on patient goals and priorities.
  • The conversations are more comprehensive, focused on patient goals and priorities, than is the case for control groups. The intervention significantly reduces anxiety and depression.
  • Lower levels of anxiety and depression persist after the intervention.
  • 86% of patients perceive the conversation as worthwhile.

Two-thirds of the conversations result in positive patient behaviour change (increased attention to practical matters, more conversations involving family members, more planning for the future, and better relationships with their doctors).

4

Who is running the programme in the UK?

The Clatterbridge Cancer Centre NHS Foundation Trust is the national coordinating centre for the UK Programme and is responsible for the governance and roll-out.  The Clatterbridge Cancer Centre is the lead site and coordinates implementation, training, evaluation and research in partnership with the Palliative Care Institute, Liverpool.   A one-year initial pilot was funded by NHS England and completed in October 2017.  Results from the pilot are available on the website – http://betterconversations.org.uk.

5

Who are Ariadne Labs?

Ariadne Labs was established in 2012 with the goal of producing research and discovery that makes healthcare better and that can be applied everywhere.

It is a joint centre between Brigham and Women’s Hospital and the Harvard T. H. Chan School of Public Health.  The team includes surgeon and health reformer Dr Atul Gawande, and Dr Susan Block who has led the Serious Illness Care Programme in the US.

Ariadne Labs focuses on healthcare solutions that produce better care at the most critical moments in people’s lives, everywhere.  Its main areas of work are better birth, safe surgery, serious illness care, and its project incubator programmes for childbirth over-treatment and primary care.

6

Who is funding the UK programme?

In 2016/2017 NHS England contributed to funding a one-year pilot in the NHS, which has now completed.  Current funding is provided by The Clatterbridge Cancer Centre and participating sites.  

7

Where are the pilot sites?

The Clatterbridge Cancer Centre initially piloted the UK Programme along with two other sites: Airedale and Southend-on-Sea.

In 2018 further implementation will happen within CCC. Warrington and Halton Hospitals will join as a new acute trust pilot site. 

8

What is the evidence that this is needed in England?

People are diagnosed with serious illnesses every day.

There is emerging evidence that good communication can lead to improved care and better patient experience but it also shows that there is significant variation in approach and quality of support patients receive.

The Programme has proved to be successful in the USA and there has been no similar programme to date in this country.  We wanted to bring those benefits to patients in the UK.  The UK Programme is being rolled out in a staged process and evidence will be collected along the way through evaluation and research.

Good communication between patients and clinicians is essential to providing good care and understanding and achieving patients’ wishes.  If it is absent, delayed, or inadequate, it is less likely that patients with serious illness will receive the care they want and be able to make the choices in their life that they would like to. The UK Programme aims to make sure there is good communication, through meaningful conversations between patients and clinicians, so that this is improved.

9

How do we know what works in the USA will work in England?

The evidence base in the USA is strong and there is a high likelihood that the programme will also bring benefits to patients in this country. However, to make sure of this, a programme of evaluation and research is planned as part of the pilot. This will mean that if there are any differences in how the conversations work in this country these can be identified and the programme modified so that it works best for patients in England and the UK

10

How does this Programme help the Patient?

Learning you have a serious illness is life-changing.  Compassionate care, tailored to the patient’s needs can make a huge difference.  The benefits of earlier, high-quality conversations about serious illness care goals are substantial, and include:

  • improved quality of life,
  • reduced suffering and distress,
  • higher patient satisfaction,
  • earlier palliative care input if required
  • better patient and family coping,
  • eased burden of decision-making for families,
  • Improved bereavement experiences.

11

What about patients who it doesn’t work for – can it make things worse?

Research evidence from the USA shows that 86% of patients benefit from the meaningful conversations they have with clinicians, reporting they find them worthwhile.

Patients will be offered follow-up consultations with their clinician after the initial conversation about their serious illness.  With the patient’s consent, other healthcare professionals involved in their care will be made aware of the discussion and will also be able to provide further support if a patient needs it.

12

Is this about End-of-Life Care?

No. The conversations are for patients who have been diagnosed with a serious, life-limiting illness.

With any such illness there is often a significant degree of uncertainty about the prognosis – the outlook for the patient – and how effective different treatment options might be. Also, decisions about treatment may be informed by the patient’s wishes: for example, what trade-offs they are prepared to make between the impact and potential side-effects of treatment, how pain is managed, and how they wish to use their time whilst they are well and as their illness and treatment progress.

This is a complex and difficult time for patients, where it is likely that their illness, or another co-morbidity, might well contribute to their death at some point in the future but where there is uncertainty.

Good communication has been identified as very important in end-of-life care, and it is likely that having good conversations with patients with serious illnesses much earlier will also mean they benefit from better conversations throughout their illness and treatment, including, ultimately, towards the end of their lives.

13

Isn’t this just Advance Care Planning by another name?

 No, they’re quite different.  Advance Care Planning focuses on helping patients think ahead and establish decisions about their future care that take effect when they lose capacity to make those decisions themselves. 

The Serious Illness Care Programme focuses on helping people who have been diagnosed with a serious, life-limiting illness to identify what’s important to them and what their priorities are – for example, balancing treatment with family time and other life commitments.

This is a complex and difficult time for people, where it is likely that their illness or another health condition (co-morbidity) that they have might well contribute to their death at some point in the future but where there is great uncertainty.

Good communication has been identified as very important in end-of-life care.  It is likely that having good conversations with patients with serious illnesses much earlier will also mean they benefit from better conversations throughout their illness and treatment, including, ultimately, towards the end of their lives; this includes Advance Care Planning.

14

How will it work? How does it help the clinician?

The Serious Illness Care Programme UK is a completely new approach with the potential to transform the way we support people diagnosed with a serious illness.  It gives clinicians and patients a framework for early and honest conversations in a very supportive and equal way.

Clinicians receive a programme of training, carefully developed by experts at The Clatterbridge Cancer Centre and The Palliative Care Institute Liverpool in partnership with Ariadne Labs.

This will equip clinicians to ask patients a series of simple questions that lead to a meaningful conversation about the patient’s goals and priorities and will then enhance their experience of care, quality of life, and sense of control, as well as reducing depression and anxiety.

There will be on-going evaluation so that any learning that can improve the Programme and further enhance its benefits will be adopted and built in.

When patients talk to their health professionals and explain what’s important to them in their lives and their goals, they feel more in control and have a better experience.

The Programme offers a better experience for clinicians too because they:-

  • Have an evidence-based framework for having difficult conversations.
  • Are better able to meet patients’ needs by understanding their wishes.
  • Have been supported and trained throughout, right from preparing for this new approach to serious illness care to having conversations with patients, and then adapting their ongoing care as a result.
  • Can develop improved relationship with patients through these meaningful conversations.

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One-year pilot funded by NHS England.