Moving out of our comfort zone – learning to live with uncertainty

Michael Tapley, Medical Director, Willow Wood Hospice, Ashton under Lyne, UK, explains the background to a longer article published in the January/February issue of the European Journal of Palliative Care

Dr Michael Tapley

Dr Michael Tapley

I have had an exciting year as Medical Director here at Willow Wood Hospice ever since Specialist Nurse in Dementia, Ann Regan, came to lead our new Hospice Dementia Service.

Dave Jolley, Consultant Psychiatrist, and I had looked at the possible need for palliative help for people with dementia in our community and hospice, basing our ‘guestimates’ on surveys from other parts of the country – and even the USA.

Tameside and Glossop Primary Care Trust were keen to support this new work, but the lack of reliable data made us all feel uncertain about what this service might involve. I was cautious that we might open a floodgate above the hospice where an unstoppable pattern of referrals of people with dementia would swamp our time and energies. After all, the local people we serve know that the ‘hospice does cancer’. More and more people with other illnesses are receiving palliative care now, but I was worried that we could be criticised if increasing numbers of hospice beds were taken up by patients with dementia – especially if cancer patients were then turned away.

I really hadn’t got the point of it at all – of course the strength of a Dementia Service that goes out to people’s own homes and care homes is that it is able to provide help in the environment that the person with advanced dementia is accustomed to. This can prevent a distressing move to a potentially disorientating hospital or hospice  – where nothing is familiar –  and much may appear confused and threatening, and the patient’s cognitive decline may accelerate further.

We are all learning from the uncertainty of the new patients we are meeting and serving, as if dipping our toes into the sea to find out if it is warm. We have had a bit of a shock to find that beside us is the freezing tip of an iceberg.

Back in 2007, The Dementia Services Development Centre at the University of Stirling highlighted that changes in behaviour in older people and people with dementia might be due to pain. I thought this was widely known, and was surprised when Ann met patients whose agitation was being treated unsuccessfully with antipsychotics; and yet when analgesics were given, the agitated behaviour was replaced by calm, much to the relief of the patient, family and carers. Because this is a new service, we suspect there may be many other patients we have not yet met who right now are suffering unrecognised pain, and we don’t yet know how big this iceberg is.

Learning to share advance care plans with families, ethics around stopping treatments and good old communication may be bread and butter in cancer care, but adapting this to end of life in advanced dementia has been challenging. We are buoyed up by supportive letters from families about the care their loved one has received.

Willow Wood Hospice will continue to encourage carers, healthcare staff and families to help to melt the iceberg of unrecognised distress in dementia.

ejpc211-coverTo find out more…
The full article to which this post relates,Dementia at the end of life: what can hospices do?’ by Ann Regan, Michael Tapley and David Jolley is published in the January/February 2014 issues of the European Journal of Palliative Care (vol. 21.1). If you already have a web-based subscription to the EJPC you will be able to download this issue, plus all articles in the EJPC archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription.

Some useful links…


Do you know someone who has made a major contribution to palliative care policy development?The Palliative Care Policy Development Award, launched by the European Journal of Palliative Care (EJPC) in collaboration with the European Association for Palliative Care (EAPC), is aimed at professionals working in palliative care worldwide who have made a substantial contribution to policy development through research, clinical practice or as policy activists. Please nominate the person of your choice using the online form. Deadline for applications: 20 March 2014

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2 Responses to Moving out of our comfort zone – learning to live with uncertainty

  1. Pingback: Moving out of our comfort zone – learning to live with uncertainty | EAPC Blog | All Things Palliative - Article Feed

  2. Thanks for the inspiring resources! Great work in listening to and learning from each other. The remarks about unrecognized pain will have many, many professionals nodding along. Unfortunately – the research is all there, but the practice is a whole different story. We will use some of your insights and outcomes to plan our further training acitivities here in Austria!

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