The Value of Advance Care Planning in Care Homes. Maggie Stobbart Rowlands & Lucy Giles GSF Central Team

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1 The Value of Advance Care Planning in Care Homes Maggie Stobbart Rowlands & Lucy Giles GSF Central Team

2 Living and dying in care homes in the UK Living 463,287 older people live in a care home (CQC 2012) 5% people, over 65 years old, live in care homes (del Bono et al 2007) Approx 33% of people with dementia live in a care home (CQC 2012) Dying Approximately 20% of people, die in care homes (Davies and Seymour 2002) On average over 50% residents will die within 2yrs of admission (Katz & Peace 2003; Hockley et al. 2004)

3 Care Home Population Changing profile of people entering care homes Multiple disease processes common (Bowman et al, 2004) 62% residents with dementia (Matthews & Dening 2002) Challenges concerning communication and knowing people s views Increasingly frail and dependent population

4 Definition of End of Life Care General Medical Council, NICE People are approaching the end of life when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with: advanced, progressive, incurable conditions general frailty and co-existing conditions that mean they are expected to die within 12 months existing conditions if they are at risk of dying from a sudden acute crisis in their condition life-threatening acute conditions caused by sudden catastrophic events. GMC definition -

5 Advance Care Planning ACP has evolved from only focusing on instructions for medical treatment to an opportunity for patients/ families to prepare for illness and the end of life in their own terms. Prof Jane Seymour Process of discussion between an individual and their care providers when there is anticipated deterioration of an individual s condition Resulting in reduced and or lack of capacity to make decisions and/or ability to communicate wishes Could include: concerns values or personal goals for care understanding about illness and prognosis, types of care or treatment preferred place of care Adapted from Henry and Seymour (2007) Advance Care Planning: A Guide for Health & Social Care Staff. London, Department of Health.

6 To identify: Aims of the Study 1. The extent to which ACP is undertaken in homes that have completed the GSF training programme & progressed to Accreditation 2. Which ACP tools or processes are in use 3. Who is involved in ACP discussions 4. What difference does it make

7 Advance Care Planning in Care Homes 33 care homes returned survey (47%) Over 90% of residents in these care homes had an Advance Care Plan, of homes being successfully accredited it is 90 to 100%. Almost ½ used GSF Thinking Ahead Document, others adapted their own paperwork The standard that must be achieved is that ACP discussion is offered to ALL residents as standard practice.

8 GSF ACCREDITED HOMES AFTER DEATH ANALYSIS Number of deaths ACP in Place number of deaths ACP in place no ACP No ACP 0 1

9 % managers Residents completed ACP NON GSF homes ( )

10 Advance Care Planning What you want Statement of wishes and preferences What you don t want to happen Advance decisions to Refuse Treatment Who you want to speak for you Lasting power of attorney

11 How is it implemented? Soon after admission Information packs given at first viewing of home Information readily available in the home/in rooms Developing plan not a one off conversation Homes have a register showing discussion dates & reviews Almost half used GSF Thinking Ahead Tool - others adapted their own

12 I think that s a very good idea

13 GSF - Advance Care Planning GSF ACP template includes: Thinking Ahead Gold Standards Framework and the Supportive Care Pathway Draft 7 Thinking ahead - open questions - what matters to you - what you wish to happen and what not to happen Thinking Ahead - Advance Care Planning Gold Standards Framework Advance Statement of Wishes The aim of Advance Care Planning is to develop better communication and recording of patient wishes. This should support planning and provision of care based on the needs and preferences of patients and their carers. This Advance Statement of wishes should be used as a guide, to record what the patient DOES WISH to happen, to inform planning of care. This is different to a legally binding refusal of specific treatments, or what a patient DOES NOT wish to happen, as in an Advanced Decision or Living Will. Ideally the process of Advance Care Planning should inform future care from an early stage. Due to the sensitivity of some of the questions, some patients may not wish to answer them all, or to review and reconsider their decisions later. This is a dynamic planning document to be reviewed as needed and can be in addition to an Advanced Decision document that a patient may have agreed. Patient Name: Trust Details: Address: Proxy - who else involved (LPOA) + who to call in a crisis DOB: Hosp / NHS no: Date completed: Name of family members involved in Advanced Care Planning discussions: Contact tel: Name of healthcare professional involved in Advanced Care Planning discussions: Role: Contact tel: Preferred place of care and death- options Thinking ahead. What elements of care are important to you and what would you like to happen? What would you NOT want to happen? Other requests eg special instructions ACP Dec 06 v 13 ACP review sheet

14 Some caveats and sensitivities Some decline - live for the moment or take one day at a time Changing views over time Clash of viewpoints- patient, family Sensitive to cultural interpretations Staff resistance -who best to do it? Time consuming When to begin? How to do it? Communication skills Consistency and communication - coordinated strategic plan Raising expectations delivering care in line with wishes may be impossible? And others

15 the response is amazing

16 4. What difference does it make comments improved communication with families enabled relatives to express their own wishes and to come to terms with the deterioration and death of a loved one enabled relatives to express their own wishes and to come to terms with the deterioration and death of a loved one Helped to increase our home deaths from 68% to 98% promotes quality time with loved ones improved the skills and confidence of staff supports proactive work we in Residential homes are now more able to care for people to the end of their life It has provided a culture of openness and realisation helps with difficult conversations -- helps prepare them

17 Totally confident when the time comes

18 At individual level- Bill 82 year old in care home -COPD, frailty+ other conditions Poor quality of life and crisis admissions to hospital Ad hoc visits -no future plan discussed Staff and family struggling to cope No advance care planning, no life closure discussion Crisis- worsens at weekend - calls 999 paramedics admit to hospital- A&E- 8 hour wait on trolley-dies on ward alone Family given little support in grief - staff feel let family down No reflection by teams- no improvement Expensive for NHS - inappropriate use of hospital

19 At National Level- Quality and Cost - UK Quality- OUTCOMES Now- about 50% not dying where they choose Many still die poorly Weighted against elderly, non-cancer patients Productivity -COST Overspending on hospitals and unwanted treatments 30% rise in costs if stay same CONCLUSION With better proactive planning and prevention of crises more could be expected to die at home/ where they choose Better listening- advance care planning discussions Focus on community care and reducing hospital admissions

20 GSF gives a structure to ACP as part of improving End of Life Care makes ACP more likely to happen and helps coordination of care GSF helps identify the right patients ACP tells you what people need, want or don t want GSF helps deliver it

21 Key points 1. ACP is important part of improving end of life care 2. Our experience 1. Patient choice- people want this (usually) 2. Ability - we can do it 3. Benefits- ACP can help improve care and quality of life & death 4. Dealing with fears- there are many levels 3. We need a structured approach to improve consistency and effectiveness in our experience, GSF provides this

22 When your time comes to die make sure that dying is all you have left to do

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