Honiton cluster Advance Care planning presentation
Advance care planningEast DevonHospiscareCommunity PalliativeCare Team6th & 20th June 2011
Who‟s who?East Devon Community Palliative Care Team:Angela Phillips Cluster Team LeaderStella ThompsonSue SpencerJayne BramleyMary AshbyNatalie MearKerry 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 messages1. You are doing it already….and if you aren‟t..why not?2. You are not on your own3. It is rarely a one off event- but a series of conversations held over time
Background to Advanced CarePlanning 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.
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?
Strategies in instigating an Advance Care Plan Stella Thompson Community Clinical Nurse Specialist Hospiscare
NCPC Project (2010) - ”dying to talk toyour GP?” “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.”
Identification of EoL patients that maybenefit• 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.
Taken from GSF Prognostic Indicator guide2008 Cancer GP’s Workload High Ave 20 Deaths per GP per year Function Low Time Organ Failure High Function Low Time Fraility/Dementia High Function Low Time
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
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 ADRTsI wish to refuse the following In these circumstances:-specific treatments:-Artificial (mechanical) breathing If I have had a severe stroke withmachine little chance of recovering consciousnessAntibiotics 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
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 Affairs2) 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?
• 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 willLast night, my husband and I were sitting in the living roomand I said to him, I never want to live in a vegetativestate,dependent on some machine and fluids from a bottle’.He got up, unplugged the Computer, and threw out mywine.
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 wasGrannys. 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