From worms, butterflies and veils to outcomes – Scottish Partnership for Palliative Care 2015 conference

Categories: Education.

Welcoming everyone to the conference (and doing a rather good air-host impression) SPPC CEO Mark Hazelwood highlighted the variety of professions in the audience, and indeed the variety of people who are involved in palliative care across the country.

Referring back to the first ever annual report of the Partnership, and the reasons for its creation, Mark commented on the importance of having “a means of connection”; a way to bring together people working for the same goal in different settings, for collaboration, sharing of ideas and to form a unified voice.

Measuring the difference we make

The first speaker of the day Dr Fliss Murtagh, reader and consultant in palliative medicine at King’s College London, set out to explain the importance of measuring outcomes – that is, the difference that a service or intervention makes to a patient.

She explained that measuring outcomes is not the same as measuring experience or satisfaction – which is often dependent on expectation – adding that hospice and palliative care services have often benefited from low expectations.

As an example, she described how your experience of surgery might be poor – your surgeon may not be very good at explaining the procedure to you – but if your surgery is a success then there has been a good outcome, despite a poor experience.

Dr Murtagh also highlighted the importance of choosing a suitable set of outcome measures, and how it is possible to minimise the time needed to collect data, while maximising its usefulness. The same set of data can be used to help inform the care of patients, help management make strategic decisions and plans for services, while also helping to benchmark an organisation and build up a national picture of services.

She also mentioned the OACC project (Outcome Assessment and Complexity Collaborative), a joint project between the Cicely Saunders Institute (based at King’s) and Hospice UK, which is working to support the wider implementation of outcome measures across the UK.

Growing through challenging times 

Next up Elaine Rae, manager of patient and family services at St Vincent’s Hospice, shared with the audience an inspirational film made by children who have been part of the Butterfly Project. This was a five-year project, run by three hospices (Prince and Princess of Wales Hospice, St Vincent’s Hospice and Ardgowan Hospice) to improve support for bereaved children and young people.

Over the five years the project supported over 600 children; the name was chosen to acknowledge that change and growth can happen when facing a challenging time in your life.

Since the project came to an end last December, the three hospices have now integrated bereavement support for children into their general services. Elaine also mentioned that there is now a Butterfly app (for iphone & ipad) which aims to help children aged 10 and older with self-care, while recognising bereavement is a very challenging time.

Lifting the veil on breathlessness

Miriam Johnson, professor of palliative medicine at Hull York Medical School, then argued that there is much more professionals can do to help people living with refractory breathlessness.

She highlighting how common a symptom it is and yet how infrequently patients report it as a problem, and how frequently professionals miss it until it becomes very serious.

Comparing breathlessness to pain, both of which can be subjective, and introducing the idea of ‘total breathlessness’, Prof Johnson commented that our treatment of breathlessness is “so far behind” where we are with pain.

She went on to discuss the evidence for various treatments of breathlessness including hand-held fans, opioids and oxygen.

The worm at the core

Speaking in the tricky spot just before lunch was Sheldon Solomon, professor of psychology and author of ‘The worm at the core’, a book which explores how a fear of death guides and motivates almost everything we do.

Prof Solomon discussed death anxiety and noted how, as humans, we are aware of our existence but this means we are also aware that we will die one day. He explained how we have a need to perceive that life has meaning and that we have value, in order to function day-to-day and counter this ‘death anxiety’.

He praised those involved in palliative and end of life care, commenting on how they help people who are facing death to maintain a sense of meaning and value and so help to affirm life without denying death.

We must improve end of life care in hospitals

Deans Buchanan, consultant in palliative medicine at NHS Tayside, strongly argued that we need to make deaths in hospitals better – because they are still going to happen, and it is likely that the number will increase, despite government policy to reduce hospital deaths and increase home deaths.

He highlighted how not everyone wants to die at home, and sometimes there are good reasons why you are in hospital, or want to be in hospital, at the end of life. He criticised the use of ‘location of death’ as a proxy for a ‘good death’, arguing that being at home does not automatically ensure a ‘good death’.

Questioning the definition of ‘home’ and referring to the Hospice Friendly Hospitals programme in Ireland, Dr Buchanan suggested that it is possible for hospitals to feel ‘home like’. He also highlighted the Patient Dignity Question as a way to help improve time spent in hospital at the end of life.

Sharing and collaborating

Music was a theme throughout the day, not only were we welcomed back from lunch with a Gaelic Lament for the Dead, but each speaker was invited to begin their talk by playing a snippet from the song that they would want played at their funeral.

The sharing of ideas and innovations was also a key theme of the day – visible within the poster presentations and the art works exhibition as well as the speakers’ contributions.

The last speaker of the day was Shona Robison MSP, Cabinet Secretary for Health, Wellbeing and Sport, who also commented on the importance of sharing ideas and innovations, highlighting some of the excellent work being carried out by various services across Scotland. 

She also acknowledged the currently problems around inconsistency in access to good quality palliative and end of life care and spoke of ambitions to bring this inequality to an end.

Presentations from the day, as well as posters from the exhibition, will shortly be available on the SPPC website.

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