Advance Care Planning
WORKBOOK
An Introductory Workbook for Health and Social Care Practitioners
Supporting Individuals in End of Life Care
Ref ACP.WB
Level: Intermediate
Last updated 14/12/10 Sue Ryder Care
lorraine.dixon@suerydercare.org
Name ………………………………….……………………………………………………
Job role ……………………………………………………………………………………
Line Manager/Mentor …………………………….…………………………………....
Date workbook started …………………………………………………………………
Date completed……………………………………………………………………….....
Completion of this workbook will help provide evidence towards:
Common Induction Standards
End of Life National Occupational Standards
Knowledge Set for End of Life Care
To view or print the Advance Care Planning tool. ‘Planning for your Future Care’
used in Gloucestershire please visit
http://www.gloucestershireccg.nhs.uk/?page_id=176
You will find the ACP document half way down in the right hand column.
WORKING IN PARTNERSHIP WITH
2gether NHS Foundation Trust
Cotswold Care Hospice
Gloucestershire County Council
Gloucestershire Hospitals NHS Foundation Trust
Great Oaks Hospice
NHS Gloucestershire Care Services
Sue Ryder Hospice
Important
This resource was funded and written by members of the Gloucestershire End of Life Education group.
Please be aware that materials will need to be reviewed and updated periodically (last update 01/2012).
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Introduction
This workbook is one of two introductory Advance Care Planning learning resources. It is
recommended you either complete this workbook OR attend one of the facilitated sessions being
delivered across the county. Advance Care Planning is part of a series of facilitated sessions and
workbooks designed to develop your skills and knowledge in supporting patients at End of Life.
Target Audience
All health and social care staff who frequently deal with end of life care as part of their role.
Aims
This workbook aims to develop your knowledge, skills and understanding of Advance Care
Planning and your role as a health and social care practitioner in facilitating Advance Care
Planning for patients in your care.
Outcomes
On completion of this workbook you will:
 Develop your knowledge and understanding of the concept of Advance Care
Planning and its relevance to your own practice setting;
 Be aware of local resources to support patients in preparing for their future;
 Identify further learning needs that you may have as a practitioner to further
develop your skills and knowledge in relation to Advance Care Planning.
How to use this workbook
The workbook provides information, guidance and opportunities for reflection to aid learning and
understanding.

The workbook is designed to be completed by you in your own time although enhanced
learning is likely to be achieved when discussed with your mentor, peers and colleagues.

It is recommended that you work through the workbook in a chronological order building in
time to read every section carefully and spend sufficient time thinking about and
completing each activity.

It is recommended that you plan your study time carefully – you do not need to complete
the workbook is just one session.
Time required completing this workbook: 1-2 hours (This assumes that you
have already gathered the resources identified in the reference list).
Other related resources:
it is recommended you consider the following additional End
of Life Care workshops or workbooks:



Raising Awareness
Communicating with Confidence
Supporting the bereaved
Please contact Sue.goold@glos.nhs.uk for further information or the EoLC Calendar of Events on
http://www.gloucestershireccg.nhs.uk/?page_id=176
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What is Advance Care Planning?
Advance care planning (ACP) is a voluntary process of discussion about future care
between an individual and their care providers, irrespective of discipline. If the individual
wishes, their family and friends may be included. It is recommended that with the
individual’s agreement this discussion is documented, regularly reviewed, and
communicated to key persons involved in their care.
An ACP discussion might include:
• the individual’s concerns and wishes,
• their important values or personal goals for care,
• their understanding about their illness and prognosis,
• their preferences and wishes for types of care or treatment that may be beneficial
in the future and the availability of these.
Henry & Seymour (2008)
ACP differs from more general forms of planning in that it is taken in the context of an
anticipated deterioration in the individual’s condition with the attendant loss of capacity to
make or communicate decisions (Killick et al. 2010).
Activity
Make a list to discuss with your mentor of potential challenges ACP might present for:
- the patient
- their family/carer
- the professional.
Make a note of the key challenges and how they might be managed.
Challenges of ACP for the patient
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Strategy to manage the challenge
3
Challenges of ACP for the family/carer
Strategy to manage the challenge
Challenges of ACP for the professional
Strategy to manage the challenge
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Key Principles of Advance Care Planning Process
National guidance published by the Department of Health and supported by the
National Council for Palliative Care recommends the following key principles for
ACP (Henry & Seymour, 2008).
1. The process is voluntary. No pressure should be brought to bear by the
professional, the family or any organisation on the individual concerned to
take part in ACP
2. ACP must be a patient centred dialogue over a period of time
3. The process of ACP is a reflection of society’s desire to respect personal
autonomy. The content of any discussion should be determined by the
individual concerned. The individual may not wish to confront future issues;
this should be respected
4. All health and social care staff should be open to any discussion which may
be instigated by an individual and know how to respond to their questions
5. Health and social care staff should instigate ACP only if in the context of a
professional judgement that leads them to believe it is likely to benefit the
care of the individual. The discussion should be introduced sensitively
6. Staff will require the appropriate training to enable them to communicate
effectively and to understand the legal and ethical issues involved
7. Staff need to be aware when they have reached the limits of their
knowledge and competence and know when and from whom to seek
advice
8. Discussion should focus on the views of the individual, although they may
wish to invite their carer or another close family member or friend to
participate. Some families may have discussed their issues and would
welcome an approach to share this discussion
9. Confidentiality should be respected in line with current good practice and
professional guidance
10. Health and social care staff should be aware of and give a realistic account
of the support, services and choices available in the particular
circumstances. This should entail referral to an appropriate colleague or
agency when necessary
11. The professional must have adequate knowledge of the benefits, harms
and risks associated with treatment to enable the individual to make an
informed decision
12. Choice in terms of place of care will influence treatment options, as certain
treatments may not be available at home or in a care home, e.g.
chemotherapy or intravenous therapy. Individuals may need to be admitted
to hospital for symptom management, or may need to be admitted to a
hospice or hospital, because support is not available at home
13. ACP requires that the individual has the capacity to understand, discuss
options available and agree to what is then planned. Agreement should be
documented www.opsi.gov.uk/acts/acts2005/20050009.htm
14. Should an individual wish to make a decision to refuse treatment (advance
decision) they should be guided by a professional with appropriate
knowledge and this should be documented according to the requirements
of the MCA 2005 www.opsi.gov.uk/acts/acts2005/20050009.htm
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Reflect and make notes on each principle in relation to supporting individuals
and their families in your own practice setting with ACP. The questions below each
principle in italics are intended to prompt your reflection. Discuss your notes on
completion of the activity with your mentor.
1. The process is voluntary. No pressure should be brought to bear by the
professional, the family or any organisation on the individual concerned to
take part in ACP
As a practitioner how would you ensure that the process was voluntary and
that no pressure was placed on those involved?
2. ACP must be a patient centred dialogue over a period of time
How could you facilitate the dialogue to be patient centred? How could you
ensure the accuracy of the ACP over a period of time?
3. The process of ACP is a reflection of society’s desire to respect personal
autonomy. The content of any discussion should be determined by the
individual concerned. The individual may not wish to confront future issues;
this should be respected
What strategies could you use to ensure the conversation about ACP is led
by the individual? How would you recognise when an individual does not
want to confront an issue? How might you manage this if family or carers
have a differing view?
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4. All health and social care staff should be open to any discussion which may
be instigated by an individual and know how to respond to their questions.
What are your strengths and weaknesses in managing difficult
conversations? How do you recognise your professional boundaries? If you
recognise a limit in your knowledge or experience who might you refer the
patient to for further support and discussion of their ACP?
5. Health and social care staff should instigate ACP only if in the context of a
professional judgement that leads them to believe it is likely to benefit the
care of the individual. The discussion should be introduced sensitively
When would it be appropriate to instigate ACP? How can you as a
practitioner determine ACP will be of benefit to the individual? How can a
discussion be introduced sensitively?
6. Staff will require the appropriate training to enable them to communicate
effectively and to understand the legal and ethical issues involved
a) If you have completed a communication module you may choose to
omit this part of the exercise, or reflect on your learning from the
module and identify areas for further improvement of your
communication skills.
If you have not completed the communication learning resource use the NHS
Knowledge And Skills Framework (NHS KSF) and The Development Review
Process Appendix 2: Core dimension 1: communication NHS knowledge and
skills framework – October 2004 to discuss with your mentor your
communication skill and identify your strengths and areas that you feel less
comfortable with. Make a plan to further develop your communication skills in
relation to ACP.
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/
dh_4107979.pdf
b) To understand the legal and ethical issues related to ACP complete
the section from page 9.
7. Staff need to be aware when they have reached the limits of their
knowledge and competence and know when and from whom to seek advice
a) How do you recognise when you have reached the limits of your
knowledge and competence?
b) If you are supporting a patient with ACP and felt you had reached the
limits of your knowledge and competence who would you seek advice
from and why?
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8. Discussion should focus on the views of the individual, although they may
wish to invite their carer or another close family member or friend to
participate. Some families may have discussed their issues and would
welcome an approach to share this discussion
How would you support the individual to include their carer or close
family member to participate? What strategies would you use to ensure
that they did not take over the discussion and the individual’s views
were respected?
9. Confidentiality should be respected in line with current good practice and
professional guidance
As a healthcare practitioner you will be familiar with the expected good practice and
professional guidance specific to your profession. Take this opportunity to revisit
the guidance. Make notes and consider the guidance with respect to ACP.
For medics go to:
http://www.gmc-uk.org/guidance/ethical_guidance/confidentiality.asp
For nurses and midwives go to:
http://www.nmc-uk.org/Nurses-and-midwives/Advice-by-topic/A/Advice/Confidentiality/
10. Health and social care staff should be aware of and give a realistic account
of the support, services and choices available in the particular
circumstances. This should entail referral to an appropriate colleague or
agency when necessary
Providing a realistic account of the support, services and choices available in
particular circumstances, can be challenging for health and social care
professionals. In considering Preferred Priorities for Care it is important to
recognise that an individual’s wish might change over time.
a) What safe guard would you put in place to ensure the document is current?
b)
See the following link below to the NHS Gloucestershire Advance
Care Planning document'
http://www.gloucestershireccg.nhs.uk/wp-content/uploads/2012/03/PLANNING-FORFUTURE-CARE-Print-version.pdf
Read the document and familiarise yourself with the prompts for discussion and the
documentation.
Is an ACP a legal document?
No! An ACP is not a legal document. It is an account of an individuals wishes, which can
be used as a guide to inform carers and professionals of their preferred priorities of care.
It can act as an aid to prompt communication around difficult issues. It can provide a
written record of the individual’s wishes and care preferences to prompt further
discussion or actions.
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If an individual wishes they can make decisions about any treatments that they will or
won’t have by completing an Advance Decision (Living Will) this is a legally binding
document which allows an individual to refuse certain treatments.
The National Gold Standards Framework (2010) states there are two specific but
overlapping areas within Advance Care Planning:
1) Advance Statement, which is a discussion of people's preferences, wishes and likely
plans i.e. what they wish might happen to them. These are generally called Advance
Statement/Statement of wishes. These are not legally binding, but are invaluable in
determining planned provision of care. The process of discussing this can be seen as
part of the solution in that it enables emotional 'catch up' and adaptation to the new
reality and normalisation of life. Sensitive discussion of advance care planning can
strengthen coping mechanisms and enable realistic planning. There is some evidence
that it increases not decreases realistic hope. They reference their own Advance
Statement included in the GSFCH programme. Other examples such as the Preferred
Place of Care (PPC) document and the NHS Gloucestershire Advance Planning
Document ‘Planning for Your Future Care’.
2) Advance Decision, is used to clarify refusal of treatment or what patients do NOT
wish to happen, involves assessment of mental competency to make that decision at the
time and when accurately formulated, can be legally binding. It also strengthens the role
of the Lasting Power of Attorney to enable a nominated proxy person to make decisions
about medical as well as social welfare.
National Gold Standards Framework (2010)
Visit the following Gold Standards Framework website for more information on Advance
Decisions and Advance Statements.
http://www.goldstandardsframework.nhs.uk/AdvanceCarePlanning
Reflect and make notes on the last four principles in relation to supporting
individuals and their families in your own practice setting with ACP. The questions below
each principle in italics are intended to prompt your reflection. Discuss your notes on
completion of the activity with your mentor.
11. The professional must have adequate knowledge of the benefits, harms and risks
associated with treatment to enable the individual to make an informed decision
Are you the appropriate person to enable an individual to make an informed decision? If
your answer is YES how do you know you have adequate knowledge of the benefits,
harms and risks associated with the decision? If NO who would you refer the patient to
make an advance decision?
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12. Choice in terms of place of care will influence treatment options, as certain
treatments may not be available at home or in a care home, e.g. chemotherapy or
intravenous therapy. Individuals may need to be admitted to hospital for symptom
management, or may need to be admitted to a hospice or hospital, because
support is not available at home.
What strategies would you adopt to ensure the individual has a realistic understanding
of the nature of their illness and where specific treatments that might be required could
be delivered?
13. ACP requires that the individual has the capacity to understand, discuss options
available and agree to what is then planned. Agreement should be documented
www.opsi.gov.uk/acts/acts2005/20050009.htm
What processes are in place within your practice setting to ensure an individual has
capacity to understand and discuss options available and agree to what is planned?
14. Should an individual wish to make a decision to refuse treatment (advance
decision) they should be guided by a professional with appropriate knowledge and
this should be documented according to the requirements of the MCA 2005
www.opsi.gov.uk/acts/acts2005/20050009.htm
Who would be an appropriate professional for you to refer to and why?
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Mental Capacity Act (2005)
The following principles apply for the purposes of this Act:
 A person must be assumed to have capacity unless it is established that he lacks
capacity
 A person is not to be treated as unable to make a decision unless all practicable
steps to help him to do so have been taken without success.
 A person is not to be treated as unable to make a decision merely because he
makes an unwise decision.
 An act done, or decision made, under this Act for or on behalf of a person who
lacks capacity must be done, or made, in his best interests.
 Before the act is done, or the decision is made, regard must be had to whether the
purpose for which it is needed can be as effectively achieved in a way that is less
restrictive of the person's rights and freedom of action.
Mental Capacity Act (2005) http://www.legislation.gov.uk/ukpga/2005/9/contents
The Mental Capacity Act 2005 covers the development of a new Lasting Power of
Attorney (LPA), allowing an appointed person to make decisions about that person’s
healthcare should that person loose capacity to do so for themselves.
Wilson, Seymour & Perkins (2010)
LPA’s can
 cover health and welfare decisions
 be registered at any time and MUST be registered before they are used
 attorney’s acting under an LPA have a legal duty to act in accordance with the
principles set out in the Mental Capacity Code of Practice
The Law Society (2010)
Activity
The flow chart on the next page summarises the process for Advance Care Planning.
With your mentor reflect on what you have learnt about Advance Care Planning and
make an action plan to further develop your knowledge and skills in this area that
acknowledges your strengths and weaknesses.
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Department of Health (2008)
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Personal Experiences of ACP
The End of Life Care Strategy encourages more open dialogue surrounding death and
preparation for death. You may choose to work through the NHS Gloucestershire Advance Care
Planning document yourself, and reflect on your personal experience.

What did you find that was helpful in the document?

What was difficult to complete?

Did you discuss the document with anyone as you completed it? Reflect on the
issues that this raised for you.

If you feel comfortable to do so discuss the experience with your mentor
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Personal Reflections of learning
To complete this workbook now spend some time reflecting on what you have learnt and how you
will put this new learning into practice.
Something I’ve learnt about myself whilst completing this workbook:
The most helpful thing I’ve learnt whilst completing this workbook:
The most important thing I’ve learnt whilst completing this workbook:
One thing I’ll try to do differently at work as a result of what I’ve learnt?
One skill or area I’d like to develop further in relation to supporting the bereaved:
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Support services & information
Accessing further End of Life Care Education and resources in Gloucestershire
Further learning and development needs will largely depend on role within your organisation. It is
recommended you speak to your line manager in the first instance to find out about further
opportunities.
Local providers of End of Life and Palliative Care education include:
Cotswold Care Hospice (01453 886868) www.cotswoldcare.org.uk
Great Oaks Hospice (01594 811910) www.greatoakshospice.org.uk
Sue Ryder Hospice (01242 230199)
http://www.suerydercare.org/care_centres.php/16/sue_ryder_care_leckhampton_court_hospice
Gloucestershire Care Services – Clinical skills training department (08456 598100)
Gloucestershire County Council – for social care staff (01452 425063)
Gloucestershire Hospitals NHS Trust, Specialist Palliative Care Team (01452 371022)
2gether NHS Trust – specialising in Mental Health and Learning Disabilities (01453 891254)
End of Life e-learning modules for Health and Social Care Staff www.e-ELCA.org.uk
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References
Department of Health (2004) The NHS Knowledge and Skills Framework (NHS KSF) and the
Development Review Process, Appendix 2: Core dimension 1: Communication NHS knowledge
and skills framework – October
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasse
t/dh_4107979.pdf
Henry, C. and Seymour (2008) Advance Care Planning: A guide for health and social care staff,
Department of Health, accessed on 31/08/10
http://www.ncpc.org.uk/download/publications/AdvanceCarePlanning.pdf
Killick, S., Pharaoh, A. and Randall, F. (2010) Advance care planning in care homes, Palliative
Medicine, Vol 24, No 4, pp. 445-446.
NHS Gloucestershire (2010) Advance Care Planning Document, accessed on 08/12/10
http://www.gloucestershireccg.nhs.uk/wp-content/uploads/2012/03/PLANNING-FOR-FUTURECARE-Print-version.pdf
The Law Society (2010) Assessment of Mental Capacity, Capacity to consent to and refuse
medical treatment and procedures., 3rd edition, Chapter 13, pp. 130-131
Wilson, E, Seymour, J. and Perkins, P. (2010) Working with the Mental Capacity Act: findings
from specialist palliative care and neurological settings, Palliative Medicine, Vol 24, No 4, pp.
396-402.
Possible further reading
Davison, S. N. (2009) Advance care planning in patients with end-stage renal disease, Progress
in Palliative Care, Vol 17, No 4, pp. 170-178.
Goth, M., Gardiner, C., Small, N., Payne, S., Seamark., Barnes, S., Halpin, D. and Ruse, C.
(2009) Barriers to advance care planning in chronic obstructive pulmonary disease,
Palliative Medicine, Vol 23, No 7, pp. 642-648.
Johnston, B. (2010) Reclaiming truly dignified care, International Journal of Palliative Nursing, Vol
16, No 7, p. 315.
Kataoka-Yahiro, M., Conde, F., Wong, R., Page, V. and Peller, B. (2010) Advance care planning
among Asian Americans and Native Hawaiians receiving haemodialysis, International Journal of
Palliative Nursing, Vol 16, No 1, pp. 32-40.
Newson, P. (2009) End-of-life care: making links with dementia care, Nursing and Residential
Care, September, Vol 11, No 9, pp. 433-436.
Newton, J., Clark, R. and Ahlquist, P. (2009) Evaluation of the introduction of an advanced care
plan into multiple palliative care settings, International Journal of Palliative Nursing, Vol 15, No
11, pp. 554-561.
Wiener, L., Ballard, E., Brennan, T.,Battles, H., Martinez, P. and Pao, M. (2009)
How I Wish to be Remembered: The Use of an Advance Care Planning Document in Adolescent
and Young Adult Populations, Journal of Palliative Medicine, March 3, pp. 2-10.
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Appendix 1
End of Life Education in Gloucestershire Evaluation Form
Workbook Title:
Date:
What was the best feature of the workbook and why?
How would you suggest changing/improving the workbook – if at all?
Please indicate your response to the following questions by ticking the appropriate box.
1. Material of Content
Strongly
Agree
Disagree Strongly
N/A
Agree
Disagree
The workbook was at an
appropriate level for me.
The workbook content was
relevant to my working situation
Comments:
2. Teaching and Presentation
Strongly
Agree
Agree
Disagree
Strongly
Disagree
N/A
The teaching methods were
appropriate
Comments:
The workbook was well
structured and organised
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Comments:
3. Learning and its Application Strongly
Agree
Disagree Strongly
to work
Agree
Disagree
I will be able to apply learning
from the workbook
List 3 actions you will be taking as a result of completing the workbook.
N/A
4. Conclusion
Overall, I would evaluate the
workbook as:
Comments:
Poor
Excellent
Good
Average
Fair
Would you recommend this workbook to a colleague? Yes No
Any other comments:
If you would like to receive further end of Life Care Education, please list what subject areas
you would like to be covered.
Thanks you for completing this evaluation. Please send any major comments to Kath
Keogh at Leckhampton Court, Church Rd, Leckhampton, Cheltenham GL53 0QJ
Otherwise please share with your manager.
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