Advanced care planning Hospiscare

Advanced Care Planning

Exeter Hospiscare Community Palliative Care Team

2 March 2011

Who’s who?Exeter Community Palliative Care Team:Jane OliverBeth DawRebecca Meyrick

Freddy James – GSF in Nursing Homes Kerry Macnish – Education ManagerTim Harlow

Background to Advanced Care Planning

Jane OliverClinical 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. (DH, 2008)

Background

• Health policy over last 10 years moving towards reducing hospital deaths (DOH, 2007, 2008).

• Public surveys demonstrate most people wish to die at home (DOH, 2000).

• Many receive good care & their preferences & wishes at EoL are met.

• Many do not & do not die where they would choose.

Why does this matter?

• ACP allows individuals to Plan for future, & prepare their loved ones.

• Promotes autonomy, sense of control, respect & dignity; holistic care.

• Allows expression of fears/concerns.• Poor EoL experience leads to family

dissatisfaction, complicated bereavement for surviving relatives.

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.

• “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?”

Achieving this

• ACP supports identifying individuals approaching EoL.

• Initiates discussions about preferences & wishes .

• Agrees a plan of care.

• Improves awareness & Coordination.

References

• The cancer Plan (DoH, 2000).• The Cancer Reform Strategy(DoH, 2007).• Advanced Care Planning: A guide for Health &

Social Care Staff (2007) at: http//www.endoflifecareforadults.nhs.uk

• The End of Life Strategy (DoH, 2008).• Dying Matters Coalition GP Project NCPC

(2010) at http//www.dyingmatters.org

ADVANCED CARE PLANNINGBeth Daw

COMMUNITY CLINICAL NURSE SPECIALIST Palliative care

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)

What is Advance Care Planning?

• ACP is a process of discussion between an individual and their care providers irrespective of discipline

• The difference between ACP and general care planning is ACP usually takes place in the context of an anticipated deterioration in the individual’s condition in the future

• Preferred Priorities of care (PPC) is the documentation used to record an advance care plan

Advance Care Planning

• What is covered?• Who completes it?• What does it provide?• Is it legally binding?• How does it help?• Does it need to be signed and

witnessed?• Who should see it?

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?

Hope and ACP

• Information leads to less fear and more control• Helps maintain relationships, preserve

normality, reduce feelings of being a burden. Encourages a sense of being in control, empowered and enabled.

• ACP can enhance HOPE not diminish it

Strategies in Instigating an ACP

Jane OliverClinical Nurse Specialist

Hospiscare

Focus

• Identify the timing to instigate ACP

• Presenting Opportunities/triggers.

• Basic Communication skills/strategies in conversations.

Indentification of EoL

• Many with chronic illness(s) reach a point where it is evident they are going to die from their condition.

• Other conditions it can be difficult to accurately predict.

• Gold Standards Framework Prognostic indicators (GSF, 2008) provides guidance.

High

Low

Func

tion

Time

Cancer

High

Low

Func

tion

Time

Fraility/Dementia

High

Low

Func

tion

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.• 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• Prognostication 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.

References• Advance Care Planning: A guide for Health &

Social Care Staff (2007) at :http// www.endoflifecareforadults.nhs.uk

• Gold Standard Framework Prognostic Indicator Guidance (2008) at: http//www.goldstandardsframework.nhs.uk

• The End of Life Strategy (2008) Department of Health, at: http//www.DoH.gov.uk

THANK YOU FOR LISTENING

Advanced Decision to Refuse Treatment

Rebecca MeyrickCommunity Cluster Team Leader

Exeter Hospiscare

Mental Capacity Act – Implications for ADRT

• 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

The Act: who it affects

• People who are experiencing delirium or confusion

• People with fluctuating consciousness or capacity• People who are under the influence of drugs or

alcohol• People who are imminently dying and who no

longer have full mental capacity• People who are unconscious

Advance Decision to Refuse Treatment (ADRT)

• A decision relating to a specific treatment in specific circumstances

• Must be written, signed and witnessed if it includes a refusal of life sustaining treatment

• Will come into effect only when the individual has lost capacity to give or refuse consent

• Must be valid and applicable• “Even if my life is at risk”• Is legally binding

Core Competencies for ACP

Assessing capacity

• Does the person have an impairment of, or a disturbance of, their mind or brain?

• Does the impairment or disturbance mean that the person is unable to make a specific decision when they need to?

Four tests• Can they understand the information?

• Can they retain 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?

Advance Decisions to Refuse Treatment

• To be binding it must 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

Third Party Involvement in Decision-Making

• Lasting Powers of Attorney

• Court appointed Deputies

• Independent Mental Capacity Advocates

Hope and ACP

• ACP can enhance hope not diminish it• Hope helps determine future goals and provide

insight• Information leads to less fear and more control• Helps maintain relationships, preserve normality,

reduce feeling of being a burden, encouraging sense of being in control,

• Empowering and enablingDavison Simpson BMJ

So what does this mean for you?

• Where are you with GSF?

• What are the current barriers and challenges for you?

• Suggestions for improvement of ACP in Primary Care?

Current Problems with ACP and CPR• Both professionals and the public understanding of CPR and its success

rate remains misunderstood

• Some patients are having CPR attempted inappropriately and as a result death can be undignified and traumatic

• Dying patients are being transferred back to hospital when their preferred place of death is home

• Patients wishes and preferences are not always clarified and respected (advance decisions to refuse treatment)

• Good communication and consistent documentation is variable

• All care settings including ambulance service have their own documentation to record DNAR

So, what can we do about this…..

• Encourage and facilitate good communication with patients and relevant others

• Clarify the differences between PPC and ADRT• Clarify that patients and relevant others will not be

asked to decide about CPR when clinicians are as sure as they can be that CPR would not be successful and therefore is not a treatment option

• Ensure a DNAR and all documents are communicated• Avoid inappropriate CPR attempts and AnD (allow a

natural death)

Locally in NHS Devon

• End of Life register (Adastra) update• GSF• ACP and ADRT documents are approved• Just in case bags are launched• Work to be done on DNAR and AnD• Phased training programme