1. DIFFICULT CONVERSATIONS – THE VIEWS OF TERMINALLY ILL PEOPLE & THEIR FAMILIES Dr Phil McCarvill 8 th July 2014@MarieCuriePA

2. MARIE CURIE Major UK end of life charity Major service provider – Network of 2000 Nurses caring for people in the last few hours and days of life – 1.3 million hours of nursing in 2012-13 9 hospices across the UK reach 8,000 people each year Our services reached a total of 38,777 people in 2012-13 Major funder of academic and health service research with an Open Access research policy Working to influence policy and practice through our policy and public affairs work.

3. DELIVERING HIGH QUALITY SERVICES

4. UNDERSTANDING THE EVIDENCE: MARIE CURIE END OF LIFE CARE ATLAS 4

5. DEMONSTRATING IMPACT – INDEPENDENT EVALUATIONS 5

6. USING EVIDENCE: USER FEEDBACK 6

7. USING SOCIAL MEDIA

8. TALKING TO TERMINALLY ILL PEOPLE AND THEIR FAMILIES

9. DIFFICULT CONVERSATIONS We wanted to test the idea that you can not carry out research with terminally ill people Conducted in-depth interviews with terminally ill people (different diagnoses), their carers and bereaved relatives Focus on experiences of care: what worked & what’s missing? These were difficult conversations, but, ultimately they provide a much-needed reality check Will help us ensure the right care for terminally ill people and their families Failure to do so means that an individual dies in discomfort or pain & family can be left with regrets, guilt and unanswered questions. 9

10. DIFFICULT CONVERSATIONS – KEY THEMES – A GOOD DEATH Little understanding of the specific concept of planning a ‘good death’ Most people understood what the key aspects of care and support that can help to ensure a good death are. Being comfortable, pain-free, in a familiar place and surrounded by friends and families were all identified Perceptions often shaped by previous negative experiences or accounts from friends and family Even where people had planned their ideal could be thwarted by unforeseen developments & lack of available services. 10

11. DIFFICULT CONVERSATIONS: A GOOD DEATH I always said when I die I don’t want to die at home, I want to die, if possible, in a hospice. I don’t want to put on anybody the burden of having to look after me at home and I think if I can go to a hospice if there is a place then … I’d be much happier. - Person with cancer 11

12. DIFFICULT CONVERSATIONS: THE JOURNEY The journey from terminal diagnosis to death is different for everyone. No two deaths are the same and no two families’ experiences are identical For some the journey is measured in weeks and months, for others it lasts many years Different conditions – different journeys, but common experiences particularly in last few days Families highlight absence of a road map – what can you expect and what support is available? 12

13. DIFFICULT CONVERSATIONS: THE JOURNEY So unfortunately it’s definitely progressed quite aggressively in the last 10 years. I’ve just had eight days in hospital in February with a UTI and I must say the time I spent in the hospital was very difficult and it’s always, ‘is this the one that’s going to get me?’ — i.e. the infection. Person with MS 13

14. THE DIFFICULT CONVERSATIONS For many people, talking about death and dying is difficult Lack of experience & fear about what lies ahead One or both parties may be in denial No talking – no care planning Key role of health and social care professionals, but quality of conversations is variable Importance of advance planning for people with cognitive degenerative conditions. 14

15. DIFFICULT CONVERSATIONS The doctors were very clear it was terminal, and straight after he was told he wanted to have a conversation with me about his pension, getting things in order, so I know he understood he was dying. But I was too upset to discuss things like that then, and after that he never wanted to talk about it even when I tried to open a conversation …. All we had was small talk. Bereaved carer – husband with cancer 15

16. DIFFICULT CONVERSATIONS: THE FAMILY A terminal diagnosis brings major upheavals for individuals and families Roles change Major decisions to be made Those involved often seek to protect one another from upset and stress Individuals want a whole family approach which reflects the needs, concerns and uncertainties of both terminally people and those around them. 16

17. DIFFICULT CONVERSATIONS: THE FAMILY We carried her from the bedroom downstairs to the family room where we had a hospital bed in the daytime… she was not conscious. Even so we were all just around there with her… Bereaved carer – daughter with cancer 17

18. DIFFICULT CONVERSATIONS: THE SYSTEM Perception – system is not built around the needs of terminally ill people and their families The division between health and social care services, number of different services and providers & lack of 24/7 services create a ‘fog’ of confusion Real differences in services available to people with different conditions Terminally ill people and their families find it difficult to navigate the system Many people do not know who does what, when and where. 18

19. DIFFICULT CONVERSATIONS: THE SYSTEM Each time I go to an appointment I think they’re going to tell me something that will show me the way clearly… it’s just bewildering … I can’t get to the bottom of it. Person with Parkinson’s 19

20. DIFFICULT CONVERSATIONS: THE CARERS Many family members take on new caring roles For caring can become all-consuming at the expense of carers’ own wellbeing Carers experience a parallel journey For many caring is also a uniquely fulfilling experience, bringing the terminally ill person and carer closer together and, for some, making the bereavement process more bearable. 20

21. DIFFICULT CONVERSATIONS: THE CARERS I was very grateful for that three months … I feel very proud of myself. Proud I did that for Mum. Bereaved carer – mother with cancer 21

22. PUTTING TERMINALLY ILL PEOPLE & THEIR FAMILIES AT THE CENTRE Context – Leadership Alliance – Five Priorities for Care As we redesign end of life care to meet the twin challenges of demographic change and financial pressures, we must ensure that build services around what terminally ill people and their families need, not what makes sense to those providing services Greater support to enable families to have the difficult conversations Support people to die in the place of their choice, pain- free and surrounded by the people who matter. Download the report & follow @MarieCuriePA for updates 22

23. THANK YOU FOR YOUR TIME