Missed Opportunities for Advance/Anticipatory Care Planning Adrienne Betteley, Nicole Woodyatt and Georgina Smerald Missed Opportunities for Advance/Anticipatory Care Planning

Aims for this Session Understand what advance care planning is and what it can look like for different people; Explore some of the reasons why advance care planning doesn’t always take place; Share thoughts and experiences of Advance Care Planning Aims:

Advance/Anticipatory Care Planning (ACP) The purpose of ACP is to help an individual plan ahead for a time when their health may change (e.g. if they have a progressive illness) and they lose capacity to make their own decisions about their care or treatment. A person may choose to plan ahead by writing down their wishes for how they want to be cared for at the end of their life; making a power of attorney; and documenting treatments they don’t want to have. Advance Care Planning may also prompt a person to make other plans, such as a making a will, registering for tissue and organ donation, or planning a funeral.

Differences across the 4 Nations Terminology Advance Care Planning is known as Anticipatory Care Planning in Scotland. Application-Legislation governing Advance Care Planning varies across the 4 nations (for more information see our toolkit learnzone.org.uk/advancecareplanning)

Background to the research Aims Explore ACP as it is currently applied in a range of contexts Explore how people living with cancer and the people surrounding them experience end of life communications and decision-making in the context of ACP This research was undertaken by Revealing Reality The first stage of the research was place based ethnographies taking place across five sites in the UK Sought to try and capture ACP in palliative and non-palliative setting Spoke to a range of health and social care professionals from different specialisms Second stage involved interviews with 12 people living with a terminal cancer diagnosis Sought to capture their stories over a period of four month Longitudinal approach to ensure respondents could take part in the research at their own pace Captured their stories through multiple visits, online diaries, telephone calls and messages

Key research findings Many people are unaware of advance care planning and its benefits and need HSCPs to start the conversation “We haven’t heard of advance care planning. Should someone have told us about that? No one has really spoken to us about anything. “ Margret who has advanced cancer HSCPs are unclear about who’s responsibility it is to have ACP conversations  “End of life is not really my bag. I am more focused on treatment.” Chemotherapy Nurse giving palliative chemotherapy

Key research findings HSCPs don’t feel they have the skills for ACP conversations “The problem is healthcare professionals always say the same thing. That they don’t feel confident, they don’t have time or that it’s a more appropriate conversation for someone else to have. This is despite that professional seeing them far more than anyone else.” ACP Clinical Nurse Specialist Barriers can prevent ACP conversations (being a fighter, not taking away hope, denial) “I spoke to the district nurse yesterday and she helped me review my meds. She told me she hadn’t spoken to me about end of life care because I’m a fighter and she didn’t want to take that away.” Kelly who has advanced cancer “There is a tendency to not want to take away hope from people. We have had patients getting injections the day before they have died. This means we are still giving people expectations they are going to get better.” Geriatrician “In my experience, there is no such thing as denial…it’s about creating the right environment for them to talk about it.” Healthcare Professional

Key research findings “We’re trying to get everyone involved in ACP. Certainly the GPs, Macmillan nurses, some specialist nurses, secondary care-consultants – trying to say to them, you’ve got a really important role. Even if it’s just the identification to pass it on.” Palliative Consultant

ACP Video https://www.youtube.com/watch?v=4EBeCP_1wNI&feature=youtu.be

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