Professional perspectives on palliative care services for people with dementia in England Nathan Davies Laura Maio Dr Krish Vedavanam Professor Jill Manthorpe Professor Steve Iliffe

Overview What is IMPACT? Methodology Results Conclusions

What is IMPACT? IMplementation of quality indicators in PAlliative Care sTudy – Nijmegen, Holland Bonn, Germany Trondheim, Norway Bologna, Italy London, England

What are the current barriers that we face today in providing palliative care for people with dementia?

21 structured interviews and one focus group Purposive sampling of national experts in policy, service organisation, service delivery, patient groups, and research in palliative care Snow balling methods Analysed using thematic analysis Method

Results 4 main themes: –Ambivalence of systematisation –Lack of integrated palliative care –Need for training –Spectrum of emotions – trust and risk

Ambivalence of systematisation Rules Structure Boundaries Flexibility Patient needs

Cont. “might have spent the last 20 years living on their sofa, but they’re not allowed to die on their sofa. Or if they do, they’re not allowed carers because they can’t bend down to the sofa. And I don’t know, it can be very frustrating sometimes” Palliative Care Nurse

Lack of integrated palliative care CurrentlyDesired Specialist Palliative care Generalist Palliative care Social care Health care Community teams Integrated teams –Clear communication –Awareness –Clear roles –Collaboration –Relationships

Cont. “a number of these admissions [to A&E], I think, the last ten to fifteen years have almost doubled because you guys [GP’s] are no longer being integrated within that pathway and you’re no longer seeing them at home before they leave” Old Age Psychiatrist

Need for training Two types of training Pain assessment Syringe drivers Having difficult conversations Experience Knowledge Acquisition of skills Confidence

Skill Acquisition “I would like to be prepared for setting up a syringe driver really quickly and have a system in place for doing that, which is something I’ve asked our local palliative care team if they can provide direct training on that, so that it can happen really quickly if the need arises, because I don’t know, I think most of the time the need isn’t there, but I wouldn’t like to feel uncomfortable about being a bit clumsy and slow about setting it up” General Practitioner

Confidence “[…] there’s a lot, a huge amount of experience out there, they just need a little bit of confidence to get past the first hurdle and there will be a lot of good knowledge about, you know, just basic approaches around dementia care” General Practitioner

Spectrum of emotions – fear and trust Clinicians and other professionals are faced with the fear of legal pursuit if something was to go wrong or goes against the wishes of the families A need for trust in order to establish collaborative working relationships and environments, but this often lacking –Among professionals –Families with professionals

Fear “And a lot of staff are very frightened about doing the wrong thing I think sometimes, they’re quite frightened about families” Palliative Care Nurse

Trust “But I think more and more these days relatives actually are more demanding and have higher expectations and see people dying as a failure” Care Home Manager

Conclusions Lessons from cancer care –Structure is needed –But not at the expense of flexibility Care Pathway is needed Inclusive working is needed but only available from a structure Training doesn’t always mean ‘training’

Thank you! Funding source: This research has received funding from the [European Union's] [European Atomic Energy Community's] Seventh Framework Programme ([FP7/ ] [FP7/ ]) under grant agreement n°[258883]. Disclaimer: The views expressed here are those of the authors and not of the European Commission.