Preparing to help others think and plan ahead (Advance Care Planning or ACP) Kerry Macnish RN and Catherine Hughes RN Education team

Preparing to help others think and plan ahead (Advance Care Planning or ACP) Kerry Macnish RN and Catherine Hughes RN Education team

Tell us. 1. Who you are 2. Who you care for 3. What you need from this session

Agreements

Tell us. 1. Who you are 2. Who you care for 3. What you need from this session

Prioritise People Practice Effectively Preserve Safety Promote Professionalism and Trust Public Protection

Free access to end of life e learning http://www.e-lfh.org.uk/programmes/end-of-life-care/ e.g. there are 35 sessions about communication and 18 about ACP within the 150+ modules available For local South West organisations some pathways have also been developed and can be found here:-http://www.sweolc.co.uk/learning_pathways.html

Online resources http://compassionindying. org.uk/library/startingthe-conversation/ http://www.nhsiq.nhs. uk/download.ashx?mi d=8399&nid=839 http://www.dyingmatters.org/page/dying-mattersleaflets

Online resources http://www.compassionindying.org. uk 0800 999 2434 http://compassionindying.org.uk/lib rary/healthcare-professionalstoolkit/

www.rowcroft.org.uk 01803 210800

Our learning objectives To affirm understanding of the principles & process of ACP and increase your access to useful resources To recall the 5 Priorities for care To improve confidence in having sensitive & open conversations with patients, families and colleagues re ACP To improve knowledge about legal & ethical aspects in decision making

5 Priorities for the care of the dying person Helping to prevent you from forgetting the 5 Priorities so that you can recall them in the moment!...

Really Curious Individuals Support People who are Dying S I nvolve Or.CRISP

http://www.rowcrofthospice.org.uk/resources

I keep six honest serving-men, they taught me all I knew Their names are WHAT and WHY and WHEN and HOW and WHERE and WHO Rudyard Kipling

What is advance care planning? I think its

What is advance care planning? An opportunity to think about what MAY happen to us in anticipation of our end of life ACP should be process of discussion(s) between an individual of any age and their care providers (irrespective of discipline) which may include or clarify:- Their understanding of their illness and prognosis, treatment options and availability of these Their wishes, values, beliefs and preferences or goals for care Any concerns they may have Any decisions they wish to make and communicate

What is ACP..? A voluntary process Family and friends may be included if the individual wishes Conversations and requests should then be clearly documented and may evolve and be open to change Communicated to others in the care team including out of hours teams (EPaCCS) Reviewed regularly ACP usually involves more than one team/discipline

Why plan in advance?

Including all people

ACP process is like plotting the journey on a map it helps set the direction of expected travel. Remember, the map is not always the territory.

Possible consequences of not planning in advance www.dyingmatters.co.uk

Who has ACP conversations?

Core Competencies for ACP

When is the right time?... When its right for the person and they are ready /ask? When its right for the family? When its right for the care team e.g. gaining realistic expectations and planned services? When we recognise dying? When its right for society, cultures and other external influences?

A continuum for discussing the future 1. 2. Think about dying/future, but put to the back of mind 3. Think about Discuss future 4. dying/future, but with family don t discuss with member/s or 5. anyone (fear of friend only about upsetting family, too practical issues Discuss future/dying difficult, not right (Will, funeral) with family or health time) professional (not both) often in recognition of change in condition or concern for family. 6. Don t think about future or dying, not important or necessary Discuss openly with family and health professionals Avoiding death Facing death Dr Gillian Horne Note: Person may never choose to reach this point

You cannot prevent the birds of sorrow from flying overhead; but you can prevent them from nesting in your hair

Electronic Palliative Care co-ordination systems (EPaCCS) Click on this link below to watch a film about EPaCCS https://www.youtube.com/ watch?v=_mahbhs80jw

So what.where are we? Your attitude and knowledge about ACP matters. ACP is underpinned by the 5 Priorties of care of the dying person Unwanted and unnecessary consequences often occur when opportunities are not raised (or are missed) to explore ACP We all have responsibility and ability to have conversations over time with those we care for Working with people as individuals with different states of readiness calls us to have many approaches to helping others

How are you? Have you had enough?

Having conversations It is clear that healthcare professionals do not always have the open and honest conversations with family members and carers that are necessary for them to understand the severity of the situation, and the subsequent choices they will have to make (Parliamentary and Health Service Ombusman 2015)

What stops you having conversations?

Including all people

The legal bit of ACP Image :Blue Diamond Gallery: Nick Youngson - link to - http://nyphotographic.com/

What is capacity? To have capacity a person must be able to: 1. Understand information 2. Retain (and Believe) information 3. Weigh information 4. Communicate any decision by whatever means

Points to consider 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

Advance Decision to Refuse Treatment (ADRT) or Advance Decision (AD ) Made when a person over 18 has capacity. Will only 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 should be in writing, be signed and witnessed and state clearly that the decision applies even if my life is at risk

ADRT/AD 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.

Useless AD If I go completely dotty just let me go and stop feeding me Feeding is basic care which cannot be refused by an ADRT Too vague Still worth taking into account when planning a person s treatment in their best interest

Valid AD 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 AD s e.g. I wish to refuse the following specific treatments:- Artificial (mechanical) breathing machine Antibiotics Artificial feeding (via a tube or drip) In these circumstances:- If I have had a severe stroke with little chance of recovering consciousness 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. When my dementia has deteriorated to the point that I cannot swallow safely, even with the help of others

When is an AD not valid? If medical treatment has changed significantly since the AD 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 AD

What can an AD not do? Request specific treatment Stop basic care nutrition/hydration by mouth basic cleanliness Ask a HCP to end 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. Two separate documents: Property and Financial Affairs Health and Welfare Must be registered with the Office of the Public Guardian. (Therefore this may take time to put in place)

A TEP is not a legal document but is part of the decision making process.. Next TEP workshop 7 Nov 2017

Where do I keep/find an ACP/AD?

Click on image to open webpage

Electronic Palliative Care co-ordination systems (EPaCCS) Click on this link below to watch a film about EPaCCS https://www.youtube.com/ watch?v=_mahbhs80jw

How to have ACP conversations

Go Wish cards/the Conversation Game You are about to see over 30 statements gathered from over 2000 patients in America. When you read the statements, sort them into 3 piles:- Very important to you Sort of important Not so important or unimportant http://codaalliance.org/

Other resources Purchased from https://churchofenglandfunerals.org/ gravetalk/ Purchased from https://finkcards.com/colle ctions/health/products/ad vance-care-planning

Opening questions/conversation starters What, if any thoughts/feelings have you had about the future? Have you thought about what you want to happen next? has that been playing on your mind?.what worries you the most about that?..can you tell me more about that? Have you talked with your family about where you wish to be cared for if you feel less well? What things do you want people to know about you in caring for you now and in the future? What things are important to you (and your those close to you)?

Having no solution is not the same as having no response Leonard Lunn: Chaplain St Christopher s hospice 1990

By Wendy Jones

B A R L E E BARLEE- gather B4 you give (Be aware of) body language Ask people about feelings and concerns Respond to cues about feelings and concerns Listen and show that you have heard Explain what help is available Exit plan Model adapted from McGuire Communication skills training by Kerry Macnish Rowcroft Hospice

Information giving Check what information is needed Give information in small chunks Use clear and simple terms Avoid detail unless requested Pause - allow information to sink in Wait for a response BEFORE continuing Check understanding Check impact

What if the person doesn t want to talk? Don t force a conversation Keep the door open watch for future cues Trusting relationship is key ingredient to ACP best person? Offer to speak with family members with person s permission to provide information about ACP when appropriate

People may not always remember what you said....but they will remember how you made them feel

What resources can help me?

What local resources can help me? Copies available from: Narnia Kestell 01803547113

Other resources Similar to Go wish but more focused on faith and funerals Purchased from https://churchofenglandfunerals.org/gravetalk/ For help with spiritual and religious care needs at end of life try this free online resource http://www.queenscourt.org.uk/spirit/

Online resources http://advancecareplan.org.uk/

http://endoflifecareambitions.org.uk/advance-care-planning-adse/

Advance decisions

Other resources Purchased from https://churchofenglandfunerals.org/gravetalk/

Resources Click on image to open webpage and great resource for many different world faiths.

Summary Use 5 priorities of care and local resources to remind you of best practice (Recognise, communicate, involve, support, plan and do) Use your professional curiosity, skill and talent to explore opportunities. Respond to cues that others give you. Use tools e.g. EPaCCs and ensure regular review of goals

When the time comes for you to die...make sure all that you have left to do is die!

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.