Preferred Priorities for Care… An Advance Statement of Preferences and Wishes

1. Preferred Priorities for Care…An Advance Statement of Preferences and Wishes

2. Some background information… • There are over 500,000 deaths in England each year • Around 28% are of those with a cancer diagnosis • Most are from those living with a LTC/life limiting illness

3. Preferred place of death in England Source What we know that we didn’t know a year ago (2012) http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now.aspx

4. The reality … Source What we know that we didn’t know a year ago (2012) http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now.aspx

5. National Audit Office Survey on End of Life Care 2008 From a survey of 200 individuals, 40% who died in hospital had no medical need to be there, and a quarter of these had been in hospital for over 1 month 59% of admissions from Care Homes could have been avoided The explicit recording of patient’s wishes can form the basis of care planning in MDT’s and other services, minimizing inappropriate admissions & interventions http://www.endoflifecareforadults.nhs.uk/publications/end-of-life-care-national-audit-office-report

6. More recent figures 2011… • Across England people average around 2.1 admissions to hospital in the last year of life-accounting for on average 30 bed days • 89% of those who die in hospital do so after an emergency admission • 12% who die have been admitted from a care home • Of people receiving hospice care who had an Advance care plan (ACP) 10% died in hospital compared to 26% who did not have an ACP Source What we know that we didn’t know a year ago (2012) http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now.aspx

7. How can we support more people to die in the place of their choosing (where possible)?

8. Its good to talk … The Advance Care Planning process provides a means to achieve this. Essentially ACP is about having conversations which facilitates and enable individuals to think about the care that they would like to receive - we often hear these conversations referred to as ‘difficult’ – Think of them as enabling and empowering conversations…

9. What is ACP? Advance care planning is a voluntary process of discussion and review to help an individual who has capacity to anticipate how their condition may affect them in the future and, if they wish, set on record: choices about their care and treatment and / or an advance decision to refuse a treatment in specific circumstances, so that these can be referred to by those responsible for their care or treatment (whether professional staff or family carers) in the event that they lose capacity to decide once their illness progresses. Source - Capacity, care planning and advance care planning in life limiting illness – A guide for health and social care http://www.endoflifecareforadults.nhs.uk/publications/pubacpguide

10. ACP: It all ADSE up • Ask: have the ACP discussion • Document: the outcomes of the conversation • Share: the persons views with family and professional carers • Evaluate: and audit the outcomes of EOLC to enable services to be reviewed and revised by commissioners

11. ACP= It all ADSE upA= Ask ACP discussions may cover… • the person’s understanding of their illness and prognosis • the types of care and/or treatments that may be beneficial in the future and their potential availability • the person’s preferences for future care and/or treatments • the person’s concerns, fears, wishes, goals, values and beliefs, need for spiritual or religious support

12. Effective communication skills………… • ACP relies on health and social care professionals being able to recognise when someone wants to talk about their future or end of life care. • ACP relies on health and social care professionals having the skills, confidence and competence to open the discussion in a timely and sensitive way. • ACP relies on health and social care professionals having the skills to structure a person focused discussion with an emotive content. • ACP relies on health and social care professionals having the skills to close the discussion leaving the person feeling supported, listened to and more in control.

13. D= Document the outcomes of the discussion Under the terms of the Mental Capacity Act 2005 formalised outcomes of the ACP may include one or more of the following • Advance statements to inform subsequent best interests decisions – e.g. PPC of which this presentation is the focus. • Advance decisions to refuse treatment (ADTR) which are legally binding if valid and applicable in the circumstances at hand • Appointment of Lasting Powers of Attorneys (LPA) for health and welfare and/or property and affairs

14. Preferred Priorities for Care …

15. Preferred Priorities for Care What is it? • It is an Advance Statement of preferences and wishes as defined by the Mental Capacity Act(2005) Who is it for? • Anyone who wants to record their thoughts about end of life care When should it be completed? • As soon as appropriate, the document can be reviewed whenever an individual changes their mind

16. The PPC is a tool which essentially serves three purposes… 1. It facilitates discussion/s around end of life care wishes and preferences and from these discussions 2. The PPC can enable communication for care planning and decisions across care providers 3. Should the person lose capacity to make a decision about issues discussed, a previously completed PPC acts as an advance statement. This means that that information included within the PPC can used as part of an assessment of a person’s best interests when making decisions about their care.

17. S= Share: the persons views with family and professional carers With the consent of the individual the content of their ACP needs to be shared with those who will enact their preferences including family and health and social care professionals Paper based e.g. PPC Notification process (example to follow) Electronically e.g. Summary care Records, Adastra, Electronic palliative care co-ordination systems (EPaCCS).

18. Preferred Priorities for Care (PPC) NOTIFICATION/AUDIT FORM

19. E= Evaluate Evaluate: and audit the outcomes of End of life Care to enable services to be reviewed and revised by commissioners Local evaluations highlight the effectiveness of ACP and how this can enhance choice for individuals as end of life approaches ACP can reduce bed stay days, minimise inappropriate hospital admissions and more importantly help to meet an individuals wishes

20. Some benefits of using the PPC… • Improved identification and registration of those with supportive, palliative and end of life care needs • More people died in the PPC • Reduced inequality in place of death • Improved communications and coordination between professionals and services • Care Homes received improved support to be able to respect residents wishes • Reduction in emergency admissions and length of stay in acute care where appropriate and in line with preference (Barnsley and South West Yorkshire 2011) http://www.endoflifecareforadults.nhs.uk/case-studies/barnsley-preferred-priorities-for-care-pilot-study-audit

21. . West Essex Audit identified that 83%of individuals with a PPC died in their preferred place PPC is an important tool in my end of life care toolkit. PPC provides the opportunity to involve the only person that really matters’ District Nurse The PPC has changed my practice as it has provided me with a tool that allows health professionals to work together to achieve patients’ goals for their end of life care. In doing this it promotes collaborative working within many aspects of care settings and health professions. Most of all it empowers patients at a time when they and their family are vulnerable. It promotes difficult conversation which enables sharing of thoughts and fears for the future and the care they hope to receive. It also provides the opportunity to discuss what is realistically achievable. It empowers individuals to be independent with their decision making process, and be supported by those professionals caring for them.”District Nurse Source West Essex Evaluation 2010 http://www.endoflifecareforadults.nhs.uk/assets/downloads/PPC_Evaluation_West_essex_Feb2010.pdf

22. Identifying and Recording Wishes and Preferences The key to the PPC is the use of 3 open questions • In relation to your health what has been happening to you? • What are your preferences and priorities for your future care? • Where would you like to be cared for in the future? NB The open questions enable individuals to dictate the content of the document rather than using a checklist which becomes ‘our’ agenda rather than the individual’s

23. In relation to your health what has been happening to you? I have cancer and a slightly dodgy kidney I have had a wonderful life with a wonderful family. I know I am dying Had a lot of pain and very afraid of how my chest is. I am frightened when I can’t breathe I have a brain tumour and I am really frightened

24. What are your preferences & priorities for future care? • I do not want my sons to find me if I die. • To maintain control & be involved in decision making • Like to die in a dignified manner & avoid a post mortem • No more treatment – I have had enough • I don’t want to go into hospital

25. Where would you like to be cared for in the future? • I want to stay in my own home • I would like to be in the Community Hospital • Prefers to die in hospice if bed available • I would like to be looked after at home, as long as my family can cope • I don’t care

26. People will have many differing responses to the questions – what is important is to create an environment of openness, honesty and trust for people to think about and express what it is that is important to them …

27. Examples of case studies highlighting the impact of the PPC…

28. Betty and Margaret have lived together for a number of years, they have learning disabilities and receive regular support to assist in their day-to-day activities. Betty has lung cancer. The care team are convinced that she is aware of her condition and that the prognosis is poor. She doesn’t want to talk about it and has said she doesn’t want the doctor to tell her any more. The team talked to her about her care and where she would like to be and she said she wanted to be at home. This was documented in a PPC The team know that Betty has a fear of hospitals and uniforms and have tried to provide all her care needs at home, however Betty becomes more poorly and a blood test reveals that her serum calcium level is 3.5 mmol/l, hypercalcaemia was diagnosed. Betty’s doctor , respecting her wishes to remain at home did not take any action. Her condition deteriorated and the team discussed with her the need to go into hospital for a short time to treat the problem, Betty agreed. She was admitted and treated but developed a chest infection and the hospital doctors wanted her to stay in during the time she was having antibiotics, but Betty was adamant that she wanted to go home and sat with the PPC on her lap insisting on going home. Her discharge was arranged and her care needs were met at home, Betty died at home a few days later.

29. Planning for a wedding and a death Peggy was a centenarian who had been living in her care home for four years after suffering a stroke. Over the last year of her life she suffered recurrent chest infections, resulting in two hospital admissions. The second admission had been quite traumatic as she had become confused and disorientated and did not want to return. Her care home had recently introduced the PPC, Peggy was one of the first residents to complete a PPC with her son involved in the process. One of her chief priorities related to how she would be dressed in the final days of life. When “the time came” she did not want to be wearing some “horrid brushed cotton affair”. Fashion had played a big part in her life and it was important she should be wearing something fitting - “a silk or satin nightgown, with a good bit of lace”! As an ardent royalist her other priority was to watch the royal wedding of Will and Kate. She would be “ready to die once they were safely married” and wanted no further admissions to hospital. A week before the wedding Peggy suffered another infection. This time, in accordance with her PPC, she remained at the home. Because the staff and family had discussed and were aware of her wishes they felt reassured they were doing the right thing.

30. Peggy rallied for the wedding, watching from her armchair, surrounded by royal paraphernalia. The home organised decorations and a wedding breakfast. An exhausted Peggy was thrilled with the proceedings and went to bed content A few days later her condition deteriorated and she entered the dying phase. The staff ensured she was always dressed in the prettiest nightgowns. She died in a beautiful peachy satin number with lace edging, a large wedding photo of Will and Kate decorating the wall opposite her bed. Peggy‘s death was peaceful and pain free. She was where she wanted to be, surrounded by the people and things that were important to her and wearing what she wanted. The opportunity to have these discussions meant that Peggy’s wishes were defined, her care planned and family involved. It also helped her to feel she was in control. Without this discussion her wishes would not have been known. Jill Chapman, End of Life Care Pathway Facilitator- Care Homes, End of Life Care Team, Bletchley Community Hospital .

31. Mrs. E 58 year old lady with type II respiratory failure Mrs. E was very passionate about her future plans and having the right to choose her preferences and priorities for future care. A PPC was completed within the acute hospital setting with a nurse specialist following an exacerbation of her condition. Within the PPC Mrs. E recorded her wish to die at home, to spend time at home with her grandchildren and to make peace with her estranged son. Mrs. E was discharged home with her PPC to die in her preferred place of care. After three months Mrs. E was admitted back into hospital and the PPC was brought in with her. The professional who instigated the PPC went to talk with Mrs. E regarding her readmission and her preference to die at home. Mrs. E was very frightened due to her deteriorating condition and was struggling to breathe requiring considerable amounts of medication and reassurance. She altered her PPC so that her preferred place of death was within the hospital, on the hospital ward where she new the staff and where she could be provided with the security of 24 hour care. However Mrs. E was at peace as she had spent time at home with her son and grandchildren and felt she had fulfilled her wishes. Mrs E died peacefully five days later with her family surrounding her on the hospital ward.

32. The PPC is about more than just completing a document – it is about mutual trust, dignity and respect. It provides a “wish list” for patients and lays the groundwork for advance care planning. The district nurses saw this as a major benefit as it gave patients and relatives an insight into what to expect Tracey Reed, Nursing Times May 2011

33. Where to begin?ACP How to Guide…

34. PPC Resources… PPC Notification Form

35. For more information on PPC Les Storey National Lead (PPC) lesstorey@gmail.com 07836799094 National End of life Care Programme information@eolc.nhs.uk www.endoflifecareforadults.nhs.uk

36. Selection of PPC Publications… Reynolds J, Croft S (2011) Applying the Preferred Priorities for Care document in practice. Nursing Standard, 25, 36,35-42 Reed T (2011) How effective is the preferred priorities of care document? Nursing Times; 107: 18, 8th May 2011 Greaves C, Bailey E, Storey L, & Nicholson A (2009) Implementing end of life care for patients with renal failure. Nursing Standard, vol23 no52 pp35-41. Storey L. (2008) End of life Care: what options are available to patients? British Journal of Heathcare Assistants. Vol. 2 No. 3. pp 149-153. ISSN 1753-1586 Storey L (2007) Introduction to the Preferred Place (Priorities) of Care tool. End of Life CareVol 1 no 2 pp68-73 Wood, J., Storey, L., and Clark, D. (2007). Preferred place of care: an analysis of the 'first 100' patient assessments. Palliative Medicine. 21. 5. 449-450 Storey l, Callagher P. Mitchell D, Addison-Jones R & Bennett W (2006) Extending choice over where to receive end-of-life care to motor neurone disease patients. British Journal of Neurological Nursing.Vol 2 No 10. Foster J, Harrison T, Whalley H, Pemberton C & Storey L (2006) End of Life Care: Making Choices. Learning Disability PracticeVol 9 No 7 Storey L, Wood J, & Clark D (2006) Developing an evaluation strategy for ‘Preferred Place of Care’. Progress in Palliative Care: Vol 14 (3) pp 120-123.