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Ask Document Share Evaluate Advance Care Planning: It all ADSE up

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

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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

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

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Copyright ©2008 BMJ Publishing Group Ltd.

Murray, S. A et al. BMJ 2008;336:958-959

Figure 1: The three main trajectories of decline at the end of life

Clinical Outcomes in End of Life Care

• Death

• Quality of death

• Place of death

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The view of Death in Society

• “In Scotland, where I was born, death was seen as imminent. In Canada, where I trained, it was thought inevitable. In California, where I now live, it’s seen as optional.”

• Ian Morrison, former president of the Institute for the Future

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

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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

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…

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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

The SANE Approach to ACP

• This is a little story about four people named Somebody, Anybody, Nobody and Everybody.

• There was an important job to be done and Everybody was sure that Somebody would do it.

• Anybody could have done it, but Nobody did it. • Somebody got angry about that because it was

Everybody's job. • Everybody thought that Anybody could do it, but

Nobody realized that Everybody wouldn't do it. • It ended up that Everybody blamed Somebody when

Nobody did what Anybody could have done

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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

Barriers to ACP

• About 1% of the population die each year yet often it remains difficult to identify people who are in their last year of life

• Reluctance to discuss “distressing” issues

• Lack of knowledge/skills/confidence

• Pressures of work

• Lack of good documentation

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Birth Plan Advance Care Plan

Preferred Priorities for Care

ACP= It all ADSE up A= Ask

ACP should discussions 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

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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

Preferred Priorities for Care …

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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

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.

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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).

Dear Colleague NHS Number:

Our patient: DOB:

Address: Telephone No:

Diagnosis: GP:

Practice

Address:

Has completed the above document and has stated a preference to be cared for at:

HOME/ CARE HOME/ HOSPICE/ HOSPITAL (Acute/Community) (circle as applicable)

Other priorities/preferences for care are:

I give consent for the information contained above to be shared with the professionals identified below YES/NO (please circle as appropriate)

If NO has been circled I have had the possible impact of this explained to me YES/NO

I give consent for the information in this document to be used for audit purposes anonymously YES/NO (please circle as appropriate)

I confirm that the information contained within the PPC is a true record of my wishes at this time.

Signed…………………………………………………………………………(please print and sign)

Date …………………………...

Name of person initiating the document:

Designation: Place of Work:

Date: Contact No:

Notification to: Please tick Fax Number Date

General Practitioner

District Nurses

District Nurses Out of Hours

Specialist Nurse

Community Macmillan Nurses

Out of Hours GP service

Hospice

Hospital (name)

Ambulance Service

Social Care Worker

Other relevant professional(name)

Preferred Priorities for Care (PPC)

NOTIFICATION/AUDIT FORM

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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

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.

Planning for a wedding and a death

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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

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