Advance care planning

East Devon Hospiscare Community Palliative Care Team

6th & 20th June 2011

Who‟s who?

East Devon Community Palliative Care Team:

Angela Phillips Cluster Team Leader

Stella Thompson

Sue Spencer

Jayne Bramley

Mary Ashby

Natalie Mear

Kerry Macnish – Education Manager

Aims

• To raise your awareness and understanding

of advance care planning (ACP) and to

promote its use as part of the solution to

improving end of life care

• To consider how to apply ACP to your

workplace and the skills and competencies

required to do so.

• To refer you to further tools, documents and

resources about ACP that can assist you

• To look after you whilst you are here….

Why Now?

• End of Life Care Strategy

• Drive to reduce acute hospital admissions

• SW SHA funding for education in ACP-

Hospiscare commissioned by NHS Devon to

roll out 2010/2011

3 key messages

1. You are doing it already….and if you

aren‟t..why not?

2. You are not on your own

3. It is rarely a one off event- but a series of

conversations held over time

Background to Advanced Care

Planning

Angela Phillips

Community Clinical Nurse Specialist

Hospiscare

Why Advanced Care Planning?

(ACP)

• Around half a million people die each year.

• 2/3rds are over 75yrs & die from chronic

illnesses such as heart disease, cancer,

CVA, COPD, neurological disease &

dementia.

• 58% of deaths occur in Hospital, 18% at

home, 17% in Care homes, 4% Hospices, 3%

elsewhere. (DoH, 2008)

Why Now?

• Health policy over last 10 years moving

towards reducing hospital deaths (DoH,

2007, 2008).

• End of Life Care Strategy 2008

• Public surveys demonstrate most people

wish to die at home (DoH, 2000).

• Many receive good care & their preferences

& wishes at End of Life (EoL) are met.

• Many do not & do not die where they would

choose.

Equity of Care

• Every individual approaching EoL irrespective of

diagnosis, age, gender, ethnicity, religious belief,

socioeconomic background, disability, sexual

orientation should receive high quality EoL care.

(DoH,2008).

• Whatever the care setting, whether home, hospital,

care home, hospice or elsewhere.

Why ACP?

• We do not always get it right in care at the end of

life.

• ACP allows individuals to plan and prepare for the

future

• Allows expression of fears/concerns.

• Enables better service provision related to patient

need.

• Improves patient and carer satisfaction with care

(giving greater control, empowerment and

confidence in care giving)

Why ACP? ...continued

• Poor EoL experience leads to family

dissatisfaction & complicated bereavement

for surviving relatives.

• Evidence to support that pre planning and

using ACP is of benefit to most patients and

families.

• Used extensively across the world.

How are

you doing

so far?

What is Advanced Care Planning?

Mary Ashby

Community Clinical Nurse Specialist

Hospiscare

Advance Care Planning

“ Caring for people at the end of their lives is

an important role for many health and social

care professionals. One of the key aspects

of this role is to discuss with individuals their

preferences regarding the type of care they

receive and where they wish to be cared

for”

(Mike Richards 2007)

• ACP is a voluntary process to which the patient

must agree to and to sharing the information.

• It is a discussion about future care between an

individual and their care providers(irrespective of

discipline).

• The discussion is to make clear an individual‟s

wishes and will usually take place in the context of

an anticipated deterioration in the future.

What is ACP?

• It may include or clarify:

1. Their understanding of their illness and prognosis, treatment options and availability of these.

2. Their wishes, values, beliefs and preferences or goals for care.

3. Any concerns they may have.

• Is helpful when guiding care when a person has lost capacity.

• If the individual wishes, their family and friends may be included.

What is ACP?

• Conversations and requests should be clearly documented and then...

• Communicated to others in the care team including Out of hours teams.

• Be reviewed regularly and if the patient should change their mind in between reviews.

• ACP usually involves more than one team/discipline.

• Preferred Priorities for care (PPC) is the documentation used to record advanced care plans.

Preferred Priorities of Care

• What is this document?

• What is its purpose?

• Who completes it?

• What is done with it?

• What if, after completing the PPC, the person becomes unable to make decisions?

• Is this document used to refuse treatment?

One Happy Team

Strategies in instigating an Advance

Care Plan

Stella Thompson

Community Clinical Nurse Specialist

Hospiscare

“Contrary to concerns by GP‟s about patients

becoming distressed or rejecting the

conversation, the study found 90% choose to

continue the conversation when initiated by

their GP. Patients who talked about their

preferences with their GP were more likely to

be placed appropriately on the EoL register,

and have their preferred place of death &

core preferences added to their medical

records.”

NCPC Project (2010) - ”dying to talk to

your GP?”

Identification of EoL patients that may

benefit

• Many with chronic illness(s) reach a point where it is

evident they are going to die from their condition.

• Other conditions can be difficult to accurately

predict.

• Gold Standards Framework Prognostic indicators

(GSF 2008) provides guidance.

High

Low

Fun

ctio

n

Time

Cancer

High

Low

Fun

ctio

n

Time

Fraility/Dementia

High

Low

Fun

ctio

n

Time

Organ Failure

GP’s Workload

Ave 20 Deaths per GP per year

Taken from GSF Prognostic Indicator guide

2008

The „triggers‟

• The surprise question: would you be surprised if

this individual were to die within 6 – 12months? -

„gut instinct‟

• Clinical Indicators of Advancing Disease , i.e.

Reduced physical performance, frequent

admissions to hospital/out of hours services.

• An individual opts for comfort measures /opts out of

curative treatment .

Triggers to consider

• Referral to Specialist Palliative Care team.

• Following diagnosis of a life limiting

condition ie. MND, advanced cancer,

dementia.

• At instigation of DS1500 for AA/DLA.

• At an assessment of an individuals needs,

complex care package, carer distress,

respite care.

• Admission to a care home.

Initiating Discussions

• Timing & setting need to be right, privacy.

• Non-verbal Communication, eye contact, attentive

listening.

• An open style of dialogue..

• How do you feel things are with you?

• How do you see things going from here?

• Have you thoughts/feelings about becoming less

well ?

• Are there things that would concern you should this

happen?

Addressing Family & Friends

• How do you think he/she is compared to last

time I came/last week?

• I feel he is less well and it concerns me....

• Are there things you would like to discuss?

• Respond to cues/not to outside pressures;

Listening is important.

• Summarise back the main points; check

your understanding.

To Summarise

• Predicting prognosis is difficult – „gut

instinct‟ is important!

• Take the lead from the individual but may

need to initiate; listen for the cues.

• Has to be a voluntary process.

• Check your understanding; Reflect back.

• Conclude and document; may change their

mind later.

Communication skills example

- watch and review

Advanced Decision to Refuse Treatment

(ADRT)

Kerry macnish

Education Manager

Core Competencies for ACP

Mental Capacity Act - 2005

• Empowerment for adults who lack capacity

• Protection for adults who lack capacity and those

who care for them

• Choice - by allowing people to appoint those they

trust to make decisions for them

• Clarification of the law in relation to advance

decisions to refuse treatments

The Act: who it affects

• Anyone who lacks capacity….

• People who are experiencing delirium or confusion

• People with fluctuating capacity

• People who are under the influence of drugs or alcohol

• People who are unconscious

• People who are unable to communicate even with special help

Four tests

• Can they understand the information?

• Can they retain and believe the information? (only needs to be for long enough to allow them to use and weigh up the information)

• Can they use and weigh up the information?

(ie can they consider benefits and burdens?)

• Can they communicate their decision by whatever means?

Points to remember

• Capacity is Decision Specific

• You must presume capacity unless evidence

exists otherwise

• People should be supported to make their

decisions

• Anything done for or on behalf of a person

who lacks capacity should be the least

restrictive of their basic rights and freedoms

• People are allowed to make “unwise or

eccentric decisions”

••

• Made when a person over 18 has capacity.

• Will come into effect only when the individual has

lost capacity to give or refuse consent.

• A decision relating to a specific treatment in

specific circumstances.

• If it includes refusal for life sustaining treatments

they must be in writing, be signed and witnessed

and state clearly that “ the decision applies even if

my life is a t risk”

• Advance decisions that meet all the

requirements of the MCA are legally binding

(guidance available in code of practice for

MCA)

• To be binding it must be both Valid and

applicable.

• If binding, the person has taken

responsibility for the decision

• If not binding, must still be considered when

assessing best interests.

Valid ADRT

• I now have MND and benefit from PEG

feeding. As my condition deteriorates, if I

should lose consciousness and am not

expected to recover after 24hrs, I wish

feeding, hydration and any other life

prolonging treatment such as antibiotics to

be withdrawn or withheld although

medication such as painkillers for my

immediate comfort can be used. This

decision to apply even if my life is at risk”

Valid ADRTs

I wish to refuse the following

specific treatments:-

In these circumstances:-

Artificial (mechanical) breathing

machine

If I have had a severe stroke with

little chance of recovering

consciousness

Antibiotics If my dementia means that I cannot

not make the decision, in the event

that I have a severe chest infection

that might threaten my life.

Artificial feeding (via a tube or drip) When my dementia has

deteriorated to the point that I

cannot swallow safely, even with

the help of others

• If medical treatment has changed significantly since the ADRT was made

• If it is not specific enough to include current circumstances – home, family and health

• If „out of date‟ - good practice to update every 2 years

• If a LPA has been drawn up covering the same treatment

• If a person has recently behaved in a way to suggest they have changed their minds

• If there is any evidence of duress• If there is any evidence the patient has

withdrawn the ADRT

•

•

or intentionally shorten a patients life

Lasting power of Attorney (LPA)

• An LPA is a statutory form of power of attorney is created by the MCA.

• A person with capacity can choose a person (an „attorney‟) to take decisions on their behalf if they subsequently loose capacity.

• Replaces the Enduring Power of Attorney.

• Two separate documents:

1) Property and Financial Affairs

2) Health and Welfare

• Must be registered with the Office of the Public guardian. (Therefore this may take time to put in place)

Resuscitation- allow a natural death (AnD)

• We are not obliged to offer treatment to pts

that we think are futile.

• It is good practice to discuss this with pts

wherever possible

but..not if it is going to cause them distress

and do them harm.

ACP and DNAR

• Success rates poorly understood

• Inappropriate resuscitations can lead to

distressing, undignified deaths

• May result in transfer to hospital when death

requested at home

• May be part of a PPC/LCP which is not

clarified/respected

• DNAR requests within an ADRT are not always

accessible- and paramedic crews need to see a

signed document to withhold resus attempt if

responding to a 999 call.

So, what can we do about this…..

• Encourage and facilitate good communication with

patients and relevant others

• Clarify the differences between PPC and ADRT

• Think about how you will phrase your discussions. Is

this really a choice?

• Ensure DNAR decisions are backed up with

documentation and are communicated

• The Liverpool Care Pathway has a DNAR section

• But, what about patient in the last weeks/months of

life whose families may ring 999?

Core Competencies for ACP

• End of Life register is live (Adastra)

• GSF in GP practices and care homes

• PPC and ADRT documents are approved

across NHS Devon

• Just in Case bags are in all surgeries

• Work being done on a community DNAR/TEP

form

• Phased training programme

My living will

Last night, my husband and I were sitting in the living room

and I said to him, 'I never want to live in a vegetative

state,dependent on some machine and fluids from a bottle’.

He got up, unplugged the Computer, and threw out my

wine.

So what does this mean to your practice?

Case studies to help us reflect

Questions to think about…

• Who might be best placed to have advance

care planning discussions?

• Is now the right time?

• Who else might need to be involved?

• Which documents/tools (if any) might be

useful for this patient?

Summary points

• The process of ACP can enable people to think

about, discuss and have their wishes recorded in

advance of an anticipated decline in their health.

• An ACP is to be referred to if/when a person lacks

the capacity to make a decision about their care

and treatment. However, it also guides and can

instruct loved ones, health and social care staff to

plan and deliver appropriate and realistic care for

each individual.

• This can help them to be supported at all times as

they would want.

This is my favorite recipe. It was Granny's. Now you are the guardian

“This is a book that I am really going to miss. Think of me whenever you read it

Here is my favourite joke. Dad left it to me, now you must keep it alive

Thank you for this memory. I treasure it.

I always wanted to tell you this but was too shy/afraid/embarrassed.

I can‟t remember if I told you this before but.....

There is something I have learned that I would like you to know

If you watch this film, think of me. It was my

favourite.

Have you ever thought about trying....I reckon you would be great at it

0 5 10

Where are you now?

Time for home, where's the transport?