MARIE CURIE Leading UK charity providing care to people with any terminal illness Major service provider – Network of 2000 Nurses caring for people with all terminal illnesses – 1.3 million hours of nursing in – 9 hospices reach 8,000 people each year Our services reached a total of 38,777 people in Leading 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 2

DIFFICULT CONVERSATIONS Aimed to test the perceived wisdom that it is too difficult to 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 – so that they do not die in discomfort or pain & their families are not left with regrets, guilt and unanswered questions 3

DIFFICULT CONVERSATIONS – KEY THEMES – A GOOD DEATH Little understanding of the specific concept of planning a ‘good death’ However, most people understand 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 Perceptions are often shaped by previous negative experiences or accounts from friends and family Even where people had planned what they wanted their ideal could be thwarted by unforeseen developments or lack of available services 4

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 5

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 mean different journeys, but there are common experiences particularly in last few days Families highlight absence of a road map – what to expect and what support is available? 6

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 7

THE DIFFICULT CONVERSATIONS For many people talking about death and dying is difficult Lack of experience and fear about what lies ahead One or both parties may be in denial No talking invariably means no care planning Key role of health and social care professionals is essential, but quality of conversations is variable Particular importance of advance planning for people with cognitive degenerative conditions 8

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 9

DIFFICULT CONVERSATIONS: THE FAMILY A terminal diagnosis brings major upheavals for individuals and families Roles change Major decisions have to be taken 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 10

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 11

DIFFICULT CONVERSATIONS: THE SYSTEM Perception – the 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 and lack of 24/7 services create a ‘fog’ of confusion Real differences in services and support 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 12

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 13

DIFFICULT CONVERSATIONS: THE CARERS Many family members take on new caring roles 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 14

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 15

PUTTING TERMINALLY ILL PEOPLE & THEIR FAMILIES AT THE CENTRE 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 Must provide greater support to enable families to have the difficult conversations Must continue to learn from the experiences of terminally ill people and their families Support people to die in the place of their choice, pain- free and surrounded by the people who matter 16

DIFFICULT CONVERSATIONS 17 Difficult Conversations report and the Executive Summary available to download: GB/press-media/Policy-publications/ GB/press-media/Policy-publications/ for updates about end of life care issues, research and upcoming reports