“…We have a simple means of providing the right care for people as they near the end of life…
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We just ask them what they want….
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but the problem is - we just don’t ask!”
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Atul Gwande 2014 Reith Lecture ‘The Problem of Hubris’ BBC Radio 4 Ep 3
Advance Care Planning
A World-wide movement of Advance Care Planning, promoting early discussions with people about their needs, wishes and preferences, and about what is most important to them .
Definition of Advance Care Planning
(Sudore et al 2017 International Consensus)
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'Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care.
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The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.’
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What does ACP mean to people?
Advance Care Planning is a way to think ahead, to describe what’s important to you and to ensure other people know your wishes for the future. It’s about helping you to live well right to the end of your life.
Key questions to ask
- as used in the GSF Thinking Ahead tool
If you should become more unwell.....
"What is important to you?
What matters most to you ?"
"What do you want to happen ?"
"What do you not want to happen?"
"Who would speak for you
if you can no longer speak for yourself ?"
"Thinking Ahead"
GSF ACP tool
Planning now for your future care
To download the GSF Thinking Ahead ACP planning tool, click here
Advanced care planning means thinking ahead, discussing with others, writing things down and appointing someone as an advocate or spokesperson, whether informally as a nominated spokesperson or proxy, or legally (with a recorded Lasting Power of Attorney for Health and Wellbeing).
This means that your wishes are known and respected, and you’re more likely to receive the kind of care you want in the place you choose if you become unwell, or if you could no longer speak for yourself.
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Advance Care Planning International (ACP-i)
Website https://www.acp-i.org/ see here
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There is an international society dedicated to advance care planning , which holds regular conferences and shares information across all contexts and countries, to promote international uptake of advance care planning .
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Mission
"The International Society of Advance Care Planning (ACP-i) mission is to promote the universal adoption of Advance Care Planning (ACP) and patient-centered care to enable the delivery of quality end of life care taking into account each individual’s physical, psycho-emotional and spiritual care needs.
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The ACP process ideally results in the designation of a health care proxy, and in the creation of a written plan, commonly referred to as an advance directive, which accurately reflects the individual’s goals, values, and wishes about future healthcare.
Since goals and medical treatment decisions may change over time, especially if overall health or if a person’s situation changes, planning needs to be reviewed.
The types of planning may vary depending on whether the person is healthy, has mild to moderate chronic illness or is likely to die in next 12 months.
ACP is therefore ongoing, and is subject to continual re-evaluation and possible updating, triggered by key health or life experiences.
Further reading: ACP Def Sudore-1, Rietjens 1"
ACP Changing Model
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The evolving balancing of both the medical ‘transactional ‘and personal ‘transformational’ models of advance care planning. (Thomas K, Advance Care Planning in End of Life care OUP 2018 p.12 )
From...
Medical Issues
Disease Agenda-
Person/patient's perspective
Transactional
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'What's the matter with me'
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Pathology, differential diagnosis
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Symptoms signs, investigations
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Options for aggressive treatment
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Discussing side effects and successes of different treatment options
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Discussing specific refusals or ADRT (Advance Directive for Refusal of Treatment )
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Emergency plans / resuscitation/ DNACPR / Respect / Treatment Escalation Plans
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There has been an evolving concept of ACP over recent decades moving from a more medically orientated ‘transactional‘ model to the more person-centred model ‘transformational’ model.
This is in line with the move to 'shared decision making' particularly with doctors and 'care and support planning' for people with long term conditions .
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To
Personal Issues
Illness Agenda-
Person/patient's perspective
Transformational
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'What matters to me'
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Ideas, concerns, expectations
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Priorities, feelings, thoughts
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Effects on my life now
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Understanding the unique experience of the illness
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Spiritual issues ,inner life or essence
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Family discussions
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Reconfiguring life in a new context of a life-limiting condition
Further Reading
The second edition of the OUP textbook ‘Advance Care Planning and End of Life Care’ edited by Keri Thomas, Ben Lobo and Karen Detering includes many chapters describing how ACP is used in many countries. ISBN: 9780198802136
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To order, claim your 30% discount by entering the discount code AMPROMD9 at the Oxford University Press store here
