Living Well to the Very End

In 2017, ASPH applied to join in the latest cohort of NHS Trusts participating in the ‘Patient and Family Centred Care’ programme supported by the Point of Care Foundation.  The programme aims to support organisations in making tangible improvements to how patients are cared for at the end of life.

The cornerstone of the programme is patient shadowing, which gives staff a unique insight into the experiences of patients and families, and helps them to identify which areas of care need improving as a matter of priority.

Within ASPH, the project has been led by a small team including Dr Emma Wilkinson, Care or the Elderly Consultant.  Emma has written a two part blog to describe the learning from the shadowing project and how this has been used to improve the care we provide for our own patients at the end of life.

Part One: ‘Living Well to the Very End’

In the first few months of joining ASPH, I was asked to get involved with this project.  Going against all the advice you are given as a new consultant to ‘say no!’ – I said ‘yes’ and this is where the story starts.

I have always enjoyed collaborating with Palliative Care teams during my training years and it was nearly my choice of speciality.  I believe that they provide truly personalised, individual care in a compassionate way and they support staff as well as patients and relatives in very emotional times. They always appear to have time for you and I find this remarkable.

That this was a project supported by the Point of Care Foundation, made it all the more appealing, but as the journey progressed, there were many more unexpected surprises, which have led to a very positive experience I would like to share in this blog.

Early-on in the project I was introduced to the Quality Improvement team.  To have a team of people in the Trust to guide, support, apply methodology, measures and aims and generally be positive in an atmosphere that at times can feel a little like walking through treacle, was absolutely something I could buy into.

In all my years of training I had never experienced this and trying to lead an improvement project in my previous roles could be a very lonely place; usually to tick some box in your portfolio rather than being about improving patient care or experience.

I had views about changes that should be made to end of life care and I remember discussing them with the team before the first training day had occurred. They involved the normal subjects of fast track paperwork, discharges, advanced care planning and readmissions.

I was advised to ‘hold-on’, to follow the methodology and to first try to understand what problems we have from a patient’s perspective and this centred on patient shadowing as a methodology.  I did as I was advised, but had total belief that I would still have the same priorities after the shadowing.

Patient Shadowing

39e7052At the first learning event hosted by the Point of Care Foundation, we heard talks from relatives of the bereaved and volunteers that stay with patients as they die.  It was all very emotive and, although I see this every day, I often still have a cry after giving bad news.

We also heard talks from people who had done similar projects before and who had taken small steps to improve patient experience, such as arranging camp beds for relatives to sleep on when staying with loved ones who were dying; putting doorstops in place to reduce noise; and many other good ideas.

I wanted to do something less practical and more meaningful, more towards the heart of the problem.

There was a talk from a relative mentioning “little things matter” and this phrase has stuck with me. ‘Little things’ are often actually ‘big things’, but how do we know what is ‘little’ and actually ‘big’ to each individual?

Remaining sceptical that this would show anything other than what I already knew, we began the “shadowing” phase.

We put out a call for volunteers to carry out some shadowing of patients at the end of life and had a very positive response.  We found 11 people from all parts of our organisation and beyond, from school age to experienced clinicians, and many who were not used to the ward environment and would observe experiences with a fresh pair of eyes.  We were very careful to ensure that all our volunteers were supported in witnessing what can be very emotional situations. The very reason we valued their input was the same reason we needed to be careful.

I was apprehensive about shadowing myself, although I knew I had to do it to understand and put myself in the patient’s shoes I was asking others to do.  If I am honest, I thought I was going to be bored just observing and not being able to do things.

In just a few weeks, we were able to shadow a number of patients at the end of their lives and I was pleased to say that I was wrong about it not being insightful or of value.

Some of the themes from our feedback were consistent around the environments in which we provide care:

  • Our environment tends to be cluttered with clinical equipment
  • Sterile environments are not stimulating or informative
  • Sometimes the environment needs some TLC, such as peeling paint on walls
  • Food trays are sometimes left on tables in front of patients that cannot eat.
  • A general lack of confidentiality (a whole bay can tell you who struggled to open their bowels today!)
  • Noise, not only from the confused patients or the snoring, but from the bins closing shut to the bleeps and nursing handover
  • Lack of stimulation or interaction.

But we also had feedback on how we provide ‘personalised care’.  We tend to provide this in silence and document in the notes that patients ‘appear comfortable’.   Being in hospital can be quite a lonely experience and we were left questioning – Are we frightened to disturb the serenity of our patients, or do we not disturb them out of respect to communicate and ask if they are actually comfortable?

It also provided quite a debate about side room versus bay. We have always presumed it is kind and respectful to put a person into the side room when they are approaching the end of life, but the feedback was that unless plenty of family members around, it is lonelier and removes you from the experience and noise of life before your time.

How do we know if the person wants the quiet or wants the stimulation of life in a bay?  How do we know if the social life on the ward is stimulating or interfering?  Some people like to be touched, others find it intrusive and uncomfortable.  What does the person in front of me want? Have I asked?  Do relatives know?

Communication is Key

speech-bubblesWhat had become clear throughout the patient shadowing experiences was that communication was key; communication with patients; communication with families and carers; and communication within our teams.  It became very clear that good communication = good (end of life) care.

These were not the challenges that I had originally expected to be raised, and they were potentially bigger than the improvements I had originally imagined we would identify.

At this point it all became a little overwhelming.  I knew I could do a simple tick sheet answer to the problem, but everything was telling me that this wasn’t the answer.  Nurses and Doctors did not have the time (or enthusiasm) for another piece of paper work to fill in.  We struggle to get through the tasks we need to accomplish in a day as it is.

However daunting, all this was telling me that it was the conversation that was important and then the outcomes would follow.  The findings from our shadowing had taken me away from my task-driven world and into the reasons I first applied to become a doctor.

So I ask you…

  • Why did you choose the career you are in?
  • What did you say in that first interview to gain entry into your career? It was usually quite naïve but beautiful ideas of “helping people”, “caring for people”, “to make a difference”
  • Has anything changed?
  • Have you become task focussed and sometimes forget the person in front of you?
  • Have you put a wall up to protect yourself from all the emotion that can become just too much?
  • Do you see the book of diagnoses and management plans instead of the person in front of you?
  • Do you worry about the time this conversation will take when you have a list of things that need your attention?

Why not start shadowing your patient journeys and seeing what you learn?  You may well be surprised about what you find.

If you are concerned about the time that this will take when our teams are already extremely stretched, I can advise a few things…

Firstly, get in touch with the QI team via ‘Be the Change’ who will offer support and guidance throughout, and ask for volunteers to help.

Secondly, use whatever technology is available such as the GoShadow mobile app that can print reports from the experiences you observe.

Finally, if you are in a leadership role, do your best to protect the time for your teams to reflect on what you learn.  In a recent blog on this website, we referenced Shaun Maher (Strategic Advisor for Person Centred Care and Improvement for the Scottish government) and the power of storytelling.   Shaun Maher has also talked about the need to protect units who start on the journey of using the patient shadowing methodology, as these kind of change ideas are not always valued by the system but then they are proven to improve many patient outcomes.

In the second part of the blog I will tell you about how our learning led us to adopt the approach of asking “What Matters to You?” and the practical steps we have taken to embed this, and to improve communication and the care we provide to our patients.


Emma – @SurfingEm



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