End of Life Care workshop Let’s Talk about End of Life Care 7 November 2012 The Holiday Inn, Birmingham

Welcome Maureen Spinetto RCN Officer, West Midlands

Chair‟s opening remarks Amanda Rolland Programme Manager National End of Life Care Programme

National Council for Palliative Care video „Why Dying Matters To Me‟ http://www.dyingmatters.org /page/why-dying-matters-me

Case Study: Managing rapid discharges of patients at End of Life Tammy Bellamy Complex Discharge Nurse Specialist, Birmingham Heartlands Hospital

Tammy Bellamy Complex Discharge Nurse Specialist Birmingham Heartlands Hospital

CDNS Team • Complex Discharge Nurse Specialist Team (DLN)

• BHH - Cover all PCT’s (old) at BHH and all PCT’s (old) apart from Solihull GP patients at SH. • GHH – Cover all PCT’s (old)at GHH

• CLN’s at Solihull – only cover Solihull GP patients • ROLE: Co-ordinate and facilitate a safe and effective discharge of individuals with complex needs from the acute trust back into the community.

Hospital Discharges Simple Discharge

Complex Discharge

 Department of Health

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discharge 'toolkit' (2004) defines a simple discharges as ‘those patients who will usually be discharged to their own homes and have simple ongoing care needs which do not require complex planning and delivery ‘

Defined as discharges of patients with more specialist needs /ongoing health/social care needs, which require detailed assessment/planning, and delivery by the multiprofessional and multi agency working. (Department of Health Discharge ‘Toolkit’ (2004) 1. need community care services e.g. Package of care 2. need intermediate care – rehab home/rehab unit 3. be discharged to a residential home or care home  As well as multi professional hospital staff being involved in the discharge, a complex discharge will involve: community services/staff e.g. GP, Community Nurse, Local authorities, independent or voluntary organisations. (NHS Choices website – NHS Hospital Services ‘Leaving Hospital’ Discharges – 2011)

Identifying patients • • • • • • • • •

Daily Visits to allocated wards Multidisciplinary Team Meetings Ward Staff Palliative Care Team Medical Staff Social Workers Other AHP’s Family/Friends Continuing Healthcare Checklist

Case Study  Joe a 28 year old gentleman who had sarcoma to right wrist. Had it removed and had a prosthesis placed in 2005.  Developed lung metastases in left lung, had chemotherapy and larger metastases surgically removed in 2010  Reoccurrence of multiple bilateral lung metastases both lungs – surgical intervention not an option in 2011. Was receiving palliative chemotherapy on and off for a year. History of respiratory infections  Never really responded well to chemotherapy

Case Study  Admitted to A&E following a collapse on a Thursday morning in June. Respiratory failure on admission; diagnosed with possible pulmonary embolism, prognosis at this point given as hours.

 Transferred to a side room on a ward, seen by palliative care and had syringe driver with pain medication put up.  Friday morning, condition slightly improved in terms of pain and breathing, but still classed as terminal, wanting to go home ASAP – Prognosis Days

Plan – rapid discharge     

   

Prognosis – hours – day’s All hands on deck! Look at: Family – what can they do? Speak to District nurses – to provide some of the terminal carewashing/dressing as well as nursing needs e.g. Medications. Ask them to arrange Marie Curie night sits if available. Speak to Single point of access (SPA) Hospice at home (Previous BEN Patients only) Work with OT – equipment (4 hour bed turn around) Consider assessment for Fast Track Continuing Healthcare – Package of Care (as SPA - limited period of 2 weeks usually)

Fast Tracking patients via Continuing Healthcare Fast Track Route  Continuing Healthcare (CHC) is a Package of services which is arranged and

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funded for people outside hospital with ongoing care needs – unpredictable, unstable, intense, complex! Primary need has to be health! NHS CHC is free whereas social services make a charge based on income and saving – means tested Package of care at home Nursing home placement Residential care – pay care costs only Standard route for CHC – complete a CHC 30 page assessment which is sent to commissioners in community for CHC agreement and funding approval with all the other reams of application paperwork and is reviewed at one of 3 weekly panels. Agreed patient discharge in accordance with plan e.g. Home with POC, or NH placement

Fast track process  Instead of 30 page assessment – 1 page, however still have to complete all the paraphernalia that goes with this application.  Contact care agency – availability, start date, costs – send to commissioners – if patient wants to go home  Contact Nursing homes – Contracted/framework – if patient wants to go to a placement  Considered outside of panel  However only thing Fast about a Fast track application is agreement for funding!

Other community trusts  Other community trusts outside Birmingham and Solihull have their own arrangements for CHC assessment and provision.  Might be that discharge nurse does initial assessment and alerts relevant community trust, or someone is sent in to deal with the discharge from the community

 Forever changing and until clusters finalised next year, it will continue as is.

Thank you for Listening

Useful information/Further reading  Discharge Toolkit (2004) ‘Achieving Timely ‘Simple’ Discharges from Hospital’ DOH  The National Framework for Continuing Healthcare (2009) DOH.

 NHS Choices Website ‘Leaving Hospital’ – Discharges  Link: http://www.nhs.uk/NHSEngland/AboutNHSservices/ NHShospitals/Pages/leaving-hospital.aspx

Mental Capacity Act / Preferred Priorities for Care Les Storey, FRCN, Preferred Priorities for Care National Lead, National End of Life Care Programme

The Mental Capacity Act and Preferred Priorities for Care- an overview

Les Storey National Lead Preferred Priorities for Care National End of Life Care Programme

Why We Needed the Act and Who It Affects • Mental capacity issues potentially affect everyone • Over 2 million people in England and Wales lack mental capacity to make some decisions for themselves, for example, people with: – dementia – learning disabilities – mental health problems – stroke and head injuries

Cont….. • Up to 6 million family and unpaid carers, and people involved in health and social care who may provide care or treatment for them • Previous common law lacked consistency • People’s autonomy not always respected • People can be written off as incapable because of diagnosis • No clear legal authority for people who act on behalf of a person lacking mental capacity

Cont’d…. • Limited options for people who want to plan ahead for loss of mental capacity • No right for relatives and carers to be consulted • Enduring Powers of attorney seen as open to abuse

Principles of the Act • Assume a person has capacity unless proved otherwise • Do not treat people as incapable of making a decision unless you have tried all practicable steps to help them • Do not treat someone as incapable of making a decision because their decision may seem unwise • Do things or take decisions for people without capacity in their best interests • Before doing something to someone or making a decision on their behalf, consider whether you could achieve the outcome in a less restrictive way

Assumption of Capacity and Supported Decision Making

• Act sets out an assumption of capacity • Obligation to take all practicable steps to help the person take his or her own decision • Act makes it clear that a person’s age, appearance, condition or behaviour does not by itself establish a lack of mental capacity • Must give information in a clear and easy way to understand • Must help the person who lacks capacity to communicate

Examples may include: • • • • • •

people with dementia people with significant learning disabilities the long-term effects of brain damage People who are experiencing delirium or confusion concussion following a head injury people who are under the influence of drugs or alcohol • people who are imminently dying and who no longer have full mental capacity

Best Interests • All decisions must be made in the best interests of the person who lacks capacity • It is the key principle that governs all decisions made for people who lack capacity • Must consider all relevant circumstances

Best Interests cont’d…. • Act doesn’t define best interests but does give a checklist: – Must involve the person who lacks capacity – Have regard for past and present wishes and feelings

– Consult with others who are involved in the care of the person – There can be no discrimination – Least restrictive alternative/intervention

What to consider • Medical – not just the outcome, but what will be the burden and benefit of the treatment. • Welfare – How will this impact (for better or worse) on the way the person lives their life? • Social – What will this do to the person’s relationships etc? • Emotional – How will this person feel, react? What about ethics?

Case Study:

John

John is an 85 year old with end stage dementia. He has been loosing weight over the last 6 mths and is now just 6 stone. He has been hospitalised twice recently with chest infections. He is now very poorly and not taking very much food or fluids. John’s GP has prescribed nutritional drinks and has advised the care staff on making John comfortable in his last few days. Additionally, members of the district nursing team visit regularly in relation to end of life care.

You recognise that John is dying and phone his daughter, she states that she does not want come but wants you to call for an ambulance to admit him to the hospital. •What do you do? •Who is the decision maker? •Assessment of capacity – 2 stage test •Determination of capacity •Best Interests process

Admission to hospital. The following options were listed: Option i - Admit to hospital

Option i benefits •Medical care would be on hand

Option i risks •John may have an undignified death •John might die in transit •Nursing and medical staff do not know John •John would be in strange surroundings •Hospital admission areas are often busy, noisy environments; John’s needs may not be prioritised •John may become disturbed as in previous admissions •John’s life may be prolonged by active medical intervention until his notes are received •Prolonging life may cause more discomfort •No chance of a positive outcome (i.e. preserving life)

Option i - NOT to Admit to hospital

Option ii benefits •John can die in his own bed, in his own room •staff around John know him well •John may remain comfortable in his last few hours •John’s care will continue as outlined by the GP and district nurse •John will be able to have a dignified death in peaceful surroundings

Option ii risks

Outcome: • The decision maker determined that it would be in the John’s best interests to remain within the care home until he died • The decision maker contacted John’s daughter to explain her decision and the reasons why • A copy of the BI decision process she had followed was placed in John’s notes and faxed to the GP and DN Team.

Planning ahead: for a time when a person might lack capacity • The Act provides new and clearer defined ways of planning ahead: • Making your wishes and feelings known in an Advance Statement of preferences such as PPC

• Advance decisions to refuse treatment • Lasting Powers of Attorney (LPA’s) •

Lasting Powers of Attorney (LPA) • Enables people to appoint someone they know and trust to make decisions for them • Two types of LPA – ‘Property and affairs’ which replaces the current EPA – ‘Personal welfare’ which is a new way to appoint someone to make health and welfare decisions • Must be made whilst the person has capacity

The Independent Mental Capacity Advocate (IMCA) • Extra safeguard for particularly vulnerable people in specific situations (April 2007) • Who? - People with no-one to consult (other than paid carers) or if conflict with carers • When? – serious medical treatment; care home moves • Duty on LA’s or NHS bodies to provide this service • Commissioned by LAs with PCT partners – included in published consultation response (April 2006)

Preferred Priorities for care (An Advance Statement of Preferences and Wishes)

Some background information…

• There are over 500,000 deaths in England each year • Around 27% are of those with a cancer diagnosis • Most are from those living with a LTC/life limiting illness

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

How can we support more people to die in the place of their choosing?

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

Preferred Priorities for Care …

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.

Preferred Priorities for Care • What is it? • It is an Advance Statement of preferences and wishes as defined by the Mental Capacity Act(2007)

• Is it Legally Binding? • No, but the wishes in PPC should be taken into account if an individual loses capacity

• 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 minds

National Audit Office Survey on End of Life Care 2008 • 40% of patients 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 • By completing a PPC more peoples wishes will be met and inappropriate admissions to hospital can be reduced

Benefits of Planning • Death is a natural consequence of life not a failure of the health system (Storey 2008) • Pts & families benefit from knowing the truth. By diagnosing death you are giving back life. Pts are able to make end-of-life decisions. Some patients may even live longer than expected because they are able to concentrate on new ways of enjoying life that benefit their health (Mel McEvoy Nurse Consultant, Nursing Standard March 15th 2006)

• The explicit recording of patients/carers wishes can form the basis of care planning in MDT’s and other services, minimizing inappropriate admissions & interventions .(national audit office 2008)

Birth Plan

Advance Care Plan Preferred Priorities for Care

Introduction • The PPC is an Advance Statement to determine and record an individual’s and carers’ wishes and preferences in relation to their care and ultimate place of death. • An internationally recognised tool for all palliative care patients. It is currently being used in many parts of England as well as parts of New Zealand and Australia

The PPC Document contains:

•Guidance notes

•People involved in LPA •Preferences and Priorities

•Reviewing and revising

Identifying and Recording 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?

(PPC uses open questions to allow individuals to dictate the content of the document rather than using a checklist which becomes our agenda rather than the individual’s)

PPC as part of the Advance Care Planning process

• Enables initiation of End of Life Care discussions • Facilitates recording of Preferences and Priorities • May identify potential need for Advance Decisions to Refuse Treatment to be initiated • Under MCA preferences SHOULD be taken into account • Can be used to audit effectiveness of End of Life Care services in a locality

PPC questions • 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.

PPC questions • 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 PM • No more treatment • I don’t want to go into hospital

PPC questions • 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

Benefits of Using PPC • •

• •

An audit by West Essex PCT of 100 patients who died with a PPC plan in place showed that 76 per cent of patients stated they wanted to be cared for at home, 23 per cent in a hospice and one per cent in hospital. Eighty eight per cent of the group died in their preferred place of care. The proportion of deaths at home (including care homes) was 67 per cent, hospice 24 per cent and hospital nine per cent.

Christies Hospital indicates that for the 152 patients who had PPC discussions 65 per cent died in their preferred place of care. Additionally, it is claimed that having the PPC in place saved 689 days of hospital care and prevented 39 emergency admissions. – National Audit Office 2008

PPC has been used to •Ensure patient wishes are met

•Avoid inappropriate admissions •Reduce bed stay days •Advocate on behalf of a patient and their family •Resolve family dilemmas

•Clarify an individual’s wishes with her partner •Facilitate earlier discharge from hospital •Avert hospital admission by ambulance service

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.

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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• 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

PPC Resources

PPC Notification Form

For more information on PPC • Les Storey National Lead (PPC) • [email protected] • 07836799094 National End of life Care Programme

[email protected] www.endoflifecareforadults.nhs.uk

PPC Publications • • • • • • • •

• •

• •

•

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 Care Vol 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 Practice Vol 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. Storey L (2005) Preferred place of Care- Empowering patients. Information Exchange. National Council for palliative Care: London Storey L, Pemberton C & Howard A (2004) Preferred Place of Care: recording and meeting the needs of palliative care patients. Cancer Newsletter. January 2004 Storey L, Pemberton C, Howard A & O’Donnell L (2003) Place of Death: Hobson’s Choice or patient choice? Cancer Nursing Practice Vol. 2 (4) pp33-37. ISSN 1475-4266 Pemberton C, Storey L & Howard A (2003) Preferred Place of Care document: an opportunity for communication. International Journal of Palliative Nursing. Vol 8 No 10 pp Storey L, O’Donnell L & Howard A (2002) Developing palliative care practice in the community. Nursing Standard 17,8 40-42. ISSN 0029-6570

Refreshments

Practical interactive session: Understanding having difficult conversations Margaret Kendall Consultant Nurse In Palliative Care / End of Life Care Lead, Warrington and Halton Hospitals NHS Foundation Trust

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humanity, dignity and respect

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good communication

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clear information

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best possible symptom control

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psychological support when needed

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Cancer Plan 2000

National Audit Office 

60% of complaints escalated to the Health ombudsman are around communication.

Why is it so Difficult?  

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Feeling inadequately trained Fear of upsetting the patient / relative Fear of being blamed Fear of unleashing strong emotions Fear of making things worse Embarrassed about showing sympathy / emotion

Why is it so Difficult?  

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Facing difficult questions Not knowing all the answers +/- lack of knowledge Not enough time Patient / family may not want to talk to you

SPIKES A TOOL TO HELP 

S

setting and listening skills.

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P

patient perception of condition and seriousness.

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I

invitation from patient to give info.

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K

give info, medical facts/knowledge, small chunks, check understanding.

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E

explore emotions.

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S

strategy and summary.

SPIKES

SETTING AND LISTENING SKILLS

SPIKES SETTING AND LISTENING SKILLS 

Introductions.

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Negotiate time if limited

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Open questions.

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Facilitating – non verbal, pauses, nods, repetition.

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Clarifying – rephrasing.

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Listening verbally and non-verbally.

SPIKES

PATIENT’S PERCEPTION

SPIKES PATIENT‟S PERCEPTION

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What do they know, think or suspect?

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“So that I understand what you know, can you tell me what has been happening?”

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“What has made you want to ask this question…?”

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“How do you feel today?”

SPIKES

INVITATION

SPIKES INVITATION

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Are they ready to find out? – “Would you like me to explain this to you?”

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How much do they want to know? – “Are you the type of person that wants all the details, or just an outline?”

SPIKES

KNOWLEDGE

SPIKES KNOWLEDGE 

The warning shot.

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Staircase of information.

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Small chunks.

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Speak slowly and simply, no jargon.

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Pause often.

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Check understanding.

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Use diagrams, leaflets if helpful to them.

SPIKES

EXPLORE EMOTIONS And EMPATHISE

SPIKES EXPLORE EMOTIONS AND EMPATHISE

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“How do you feel about that?”. Identify emotion – shock, anger, sadness. Educated guesses Acknowledge source – unexpected bad news. Show you understand the connection. Show you care. Silence is okay. Touch may be appropriate

SPIKES

STRATEGY AND SUMMARY

SPIKES STRATEGY AND SUMMARY

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Negotiate management plan.

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Further concerns/questions?

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Summarise.

Arrange next contact (may not be with you). 

Blocking behaviours Wilkinson 1991; Wilkinson et al 2008; Maguire et al 1996

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Overt blocking - Complete change of topic Patient: HCP:

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“I was upset about being ill” “How’s your family?”

Distancing strategies - more subtle

Change of time frame: “Are you upset now?” Change of person: “and was your wife upset?” Removal of emotion: “How long were you ill for?”

Blocking behaviours

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Physical questions Inappropriate information Closed questions Multiple questions Leading questions Defending/justifying

• Premature reassurance • Premature advice • Normalising • Minimising • Jollying along • Passing the buck • Chit chat

Useful phrases to find out concerns “What is in your mind......?”  “What are you concerned/worried about...?” (using the word concern helps patient to disclose their worries; most think that you will think they may be neurotic if they answer to the word worry)  “Is there a particular concern......?” 

Dealing with Emotions Recognition Acknowledgement Permission

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Understanding

Empathy accept.

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Non verbal/Verbal “I can see you’re...” “It’s ok to be ....” “I want to find out what’s making you.....” “I can see why you’re ….. ....because.....”

Giving significant / complex information      

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Structure the consultation to be logical and organised Signpost where the interview is going Put complex information into simple language (without being patronising) Chunk information into manageable blocks Check understanding Attend to non-verbal cues (empathise) Summarise Give appropriate but not false reassurance

Action planning session Helen Meehan Lead Nurse Palliative Care, Solihull Community Services - Heart of England NHS Foundation Trust

What learning are you taking from this workshop to support you in your work?

How will you use this learning to support you with patient care?

1. 2. 3.

What would help you locally to complete these actions and support best practice in end of life care?

How could the RCN help you in the future in relation to supporting quality and best practice in end of life care?

How could the national End of Life Care Programme help you in the future in relation to supporting quality and best practice in end of life care?

Chair‟s closing remarks Amanda Rolland Programme Manager National End of Life Care Programme