Malcolm Payne: Advance Care Planning - 1

Advance Care Planning

Malcolm Payne

Introduction and main sources

Advance care planning (acp) is the process of finding out and recording someone’s
wishes for how they want to be cared for or treated in the future. Note that it is seen as
a process; it is not just done once, but is continually updated. For social workers, it
may be a confusing term in end-of-life care. The term connects with ‘care planning’, a
stage in the process of care management which involves discussing with service users
and carers the various options and putting them together in an agreed written plan. In
palliative care, acp is often seen, particularly by doctors and nurses, as limited to the
process of creating ‘advance directives’, that is, legally enforceable statements of the
patient’s wishes not to receive particular treatments. Patients cannot of course say in
advance in a legally enforceable way that they want a particular treatment; deciding
on appropriate treatment in the best interests of their patient is the doctor’s role.
In this paper, I aim to identify different aspects and sources of acp, and point to
resources for doing it.
Good starting points are:
The Department of Health End-of-life care strategy website, which has a page on acp,
which gives you a good picture of practice in palliative care, which can well be
adopted in wider end-of-life care:
http://www.endoflifecareforadults.nhs.uk/eolc/acp.htm
This page will also take you to a number of resources, and in particular an excellent
publication containing useful guidance by Claire Henry and Jane Seymour. While this
is focused on end-of-life care and nursing, it does go wider, claiming to be for ‘health
and social care staff’.
Henry, C. and Seymour, J. (2008 – revised edn) Advance Care Planning: A Guide for
Health and Social Care Staff. London; Department of Health
http://www.endoflifecareforadults.nhs.uk/eolc/files/F2023-EoLC-
ACP_guide_for_staff-Aug2008.pdf
Another important source is the Royal College of Physicians website on acp, which
you can get their guidelines and a learning pack:
http://www.advancecareplanning.org.uk/ for the website;
http://www.rcplondon.ac.uk/pubs/contents/9c95f6ea-c57e-4db8-bd98-
fc12ba31c8fe.pdf for the guidance;
For the learning pack you have to register on the website; this is easy. They also sell a
book.
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The Guidance is, of course, medically and healthcare biased because of its source, but
it was produced with a wide range of consultation, including NCPC, Help the Aged
and the Alzheimer’s Society.
Finally, another important source is the Mental Capacity Act; the Code of Practice on
the Act is also available on the internet at: http://www.positive-
options.com/news/downloads/Mental_Capacity_Act_Code_of_Practice_TSO_2007.p
df Chapter 3 (How should people be helped to make their own decisions?) is
particularly relevant. Also on the Mental Capacity Act, you might think about Lasting
Powers of Attorney, the new process for registering someone to look after your
decisions. Often this is done by solicitors, who only bother about financial and
property powers, but you can take out a personal welfare power for other decisions.
The forms are reasonably easy for people to complete who are used to official forms.
The Public Guardian has said at conferences that he wants everyone to take out LPAs
in their 50s and 60s, and has reduced the fee and complexity of making them. His
website, with information booklets is:
http://www.publicguardian.gov.uk/arrangements/arrangements.htm

Advance care planning in not just about end-of-life care

If you talk to a doctor or nurse, or people versed in the rather legalistic American
system, they are often focused on ‘advance directives’ and the latest jargon term for
this ‘advance decisions’, what used to be called ‘living wills’. The reason for this is
that this directly affects their practice and legal position. These are legally enforceable
statements which say, in effect, please do not treat my symptoms aggressively when I
am close to the end of life’. Advance directives or decisions come up particularly with
people who have progressive diseases such as motor neurone disease or multiple
sclerosis, where the physical condition deteriorates and the mind remains active. A lot
of people in this position, once they lose most physical capacity, do not want to be
treated for infections which may lead them to die earlier than they might is doctors did
everything possible to keep them alive. However, the doctor has a duty to provide
treatment if they think it is in the best interests of their patients, so the advance
directive refuses permission for a treatment. Note that an advance directive is a
negative; it says ‘don’t treat me for this’. Patients can ask but they cannot command
doctors to provide treatment if the doctor thinks it is not in their best interests.
Because advance directives need to be specified carefully to have their legal effect,
they need a doctor or nurse and sometimes a lawyer to draft them with the patient: the
healthcare practitioner in effect goes through all the likely options and the patient says
‘no’ to the ones they don’t want; the instruction has to be clear, otherwise doctors are
bound by their professional responsibility. This tends to lead doctors and nurses to
think that advance care planning also needs full-on professional guidance, but no,
because if you look at all the documents and guidance listed above, it is quite clear
that the aim is to empower patients and service users throughout social care services
as well as healthcare, to specify their preferences.
The Mental Capacity Act Code of Practice is a good starting point for understanding
that. Chapter 3 makes it quite clear that helping someone with advance planning for
their care really requires a concern for the minutiae of everyday life in care: it’s the
small things that count. Case example 3 on page 34 is instructive:
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Scenario: Providing relevant information Mrs Thomas has

Alzheimer’s disease and lives in a care home. She enjoys taking part in
the activities provided at the home. Today there is a choice between
going to a flower show, attending her usual pottery class or watching a
DVD. Although she has the capacity to choose, having to decide is
making her anxious. The care assistant carefully explains the different
options. She tells Mrs Thomas about the DVD she could watch, but Mrs
Thomas doesn’t like the sound of it. The care assistant shows her a
leaflet about the flower show. She explains the plans for the day, where
the show is being held and how long it will take to get there in the mini-
van. She has to repeat this information several times, as Mrs Thomas
keeps asking whether they will be back in time for supper. She also
tells Mrs Thomas that one of her friends is going on the trip. At first,
Mrs Thomas is reluctant to disturb her usual routine. But the care
assistant reassures her she will not lose her place at pottery if she
misses a class. With this information, Mrs Thomas can therefore choose
whether or not to go on the day trip.

Here, we are talking about whether the service user watches telly, goes to a pottery
class or goes on a trip to a flower show. This is not about massive treatment decisions.
The Code tells us that we should be thinking about giving people the capacity to make
everyday decisions and, I would say, if we keep giving them this capacity, supporting
them in making the decisions and then implementing them, we will probably enhance
their lives because they will retain and develop the capacity to make these decisions.
This sort of thing is mainly informal and may not be widespread (yet), but the Code
then goes on to look at more chunky care decisions. Here, the Royal College of
Physician’s guidance gives us a useful steer. This sets out a number of documents in
which people are enabled to record how they would like the care services to provide
for them, now and in the future.
There are a number of formats for this. One of them, the Gold Standards Framework,
is a package of standards that GPs and care homes can take on, gaining accreditation
for good practice. This has a section on advance care planning, leading on to advance
decisions: http://www.goldstandardsframework.nhs.uk/advanced_care.php
GSF also provides a template to be used at the very early stage of care planning by
GPs, community nursing staff and others. You can find this on the internet at:
http://www.goldstandardsframework.nhs.uk/content/guides_and_presentations/ACP%
20General%20version%20Oct08%20v%2017.pdf
Here is the main bit of the template, called ‘Thinking ahead’. Which is a neat way to
put it when you are working with service users:
Thinking ahead….

1. At this time in your life what is it that makes you happy?

2. What elements of care are important to you and what would you like to happen in
future?

3. What would you NOT want to happen? Is there anything that you worry about or
fear happening?
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4. Do you have a Living Will or Legal Advanced Decision document? (This is in

keeping with the new Mental Capacity Act and enables people to make
decisions that will be useful if at some future stage they can no longer express
their views themselves) No / Yes

If yes please give details (e.g. who has a copy?)

Looking at this, it seems incredibly vague. Even the most articulate and together
people would have trouble thinking what particularly is good about their life. But
what this format illustrates is how the whole process is intended to be integral to
talking with you service user, patient or client at every stage. I actually prefer the
rather more explicit Australian guidance which helpfully grounds people in
experiences they have had and, crucially, what they have seen happen to other people:
http://www.respectingpatientchoices.org.au.
Another rather good example of this is a format recommended for care homes by one
of the umbrella bodies for private care homes: the English Community Care
Association. Their guidance on the MCA (ECCA, 2007) contains an example of the
sort of information that a residential care home might collect. Hospices and palliative
care could do worse than think about these items of information; they are much more
concrete that the GSF format.

Source: ECCA (2007) Mental Capacity Act 2005: What you need to do to ensure
compliance. London: English Community Care Association.
http://www.decha.org.uk/doc_up/1_99_Best-Interests-Assessor-Award-MCA-
2005.pdf (accessed: 21 May 2009).
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The advance care planning process is positive

I hope I’ve managed to persuade you not to fall into the trap of thinking that advance
care planning is a wholly medical thing; it is equally well for everyone involved in
care services at every stage.
So what is involved in advance care planning? Here, I turn to Henry and Seymour’s
excellent guide (see above). They make an important point (p 3): ‘The difference
between ACP and planning more generally is that the process of ACP
is to make clear a person’s wishes and will usually take place in the
context of an anticipated deterioration in the individual’s condition
in the future, with attendant loss of capacity to make decisions
and/or ability to communicate wishes to others’.

This is a really crucial issue. Many of my colleagues looked at another Department of

Health project, Preferred Priorities for Care; you can find this on the internet at:
http://www.endoflifecareforadults.nhs.uk/eolc/ppc.htm . This project also has a format
for talking with patients about their wishes, also on the internet at:
http://www.endoflifecareforadults.nhs.uk/eolc/files/F2110-
Preferred_Priorities_for_Care_V2_Dec2007.pdf .
Several people said ‘Well, we’re already doing that, it’s nothing special’. However,
what it is about is the patient’s preferences, whereas several of my colleagues
confused this with their own professional assessment, Yes, of course we always talk
with people about what they want, but, when we write it down, it is usually coloured
by our own judgement about what they need. To make a comparison, think about
carer’s assessments. The idea of having these as separate from the patient or service
user needs assessment draws attention to the fact that carers may have needs that are
different from and conflicting with the needs of the service user. Similarly, the
Children Act 1989, distinguishes between a child’s ‘wishes and feelings’ and the
professional assessment of their needs.
So advance care planning involves focusing on what the patient or service user’s
preferences are, and recording them clearly, never mind what we thing about them.
Having a separate format for this is important, because most professional records
systems or assessment forms focus on needs according to the legislation or the
agency’s priorities. Patients and service users may have completely different
priorities, which we should listen carefully to.
Henry and Seymour suggest that discussion about preferences should be documented
and constantly updated. This might then focus on to a formal statement of ‘wishes and
preferences’. The point about all of these processes is that, unlike advance decisions
or directives, they are positive statements of what people prefer. They are not about
what they don’t want, as advance directives are. Advance directives and, if a person
lacks mental; capacity, lasting powers of attorney, imply much more formal advance
decisions.

For the future

For the future then, we can see that throughout the care system, all the guidance is
towards documenting and thinking through service user’s and patients’ preferences
from first contact with the social services or the GP or district nurse. In five or ten
 Malcolm Payne: Advance Care Planning - 6

year’s time, we can expect a patient to roll up at a palliative care service for the last
stage of their care career, with carefully documented preferences that range back over
a number of years, and require taking into account and updating for their new stage of
treatment, And that is before we do anything about advance decisions or directives.

We ought also to be transferring some of the experience of dealing with these

preferences and advance directives at the last stage of life to our colleagues who are
starting out on things in people’s care careers. If we believe in people expressing their
preferences, we should be encouraging it from an early stage, not reserving it to when
they are at the end of life. It would be useful if they thought through with them where
they might like to go towards the end of life, and we might try to put information out
there that makes sure that people understand what a palliative care or hospice service
does.

And finally, the political point: notice that the government approved documents all
talk about expressing preferences; nowhere is there anything about choice. We all
know people will not have choices, because there will not be the resources for that.
All this work carefully avoids this issue.

Further information
If you want to follow things up more widely, there is a very good Australian website
on advance care planning, Respecting Patient Choices, which has useful forms and
guidelines, and accounts of research and case studies:
http://www.respectingpatientchoices.org.au (accessed:21 May 2009)
(and since it’s Australian, it does talk about choices).
There is also a Canadian website about a good project to develop advance care
planning, but it is clear that it has not advanced verey much yet. However, there is a
good definition of acp:
Advance care planning is a process of reflection and communication
in which a person who is capable, makes decisions about future
health and personal care in the event that they become incapable of
giving informed consent. It involves:

 Thinking about what gives life meaning

 Talking to health care providers, family and friends about future

health care wishes

 Thinking about who a person would like to speak for them, when
they cannot speak for themselves

 Recording goals and wishes (CHPCA, 2009)

CHPCA (2009) What is Advance Care Planning? Ottawa: Canadian Hospice
Palliative Care Association
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http://www.chpca.net/projects/advance_care_planning/acp_what_is_advance_care_pl
anning.html (accessed: 29 July 2009).

A useful report surveying the use of acp in care homes, but still with an emphasis on
end-of-life decision-making, came out from Counsel and Care, an organisation
working with older people:
Froggatt, K., Vaughan, S., Bernard, C. and Wild, D (2008) Advance Care Planning in
Care Homes for Older People: A Survey of Current Practice. London: Counsel and
Care.
http://www.counselandcare.org.uk/assets/library/documents/ACP_in_care_homes_a_s
urvey_of_current_practice_2008.pdf (accessed 29 July 2009)

Counsel and Care also publish a fairly simple guide to acp based on the research by
the same authors:

Butterworth, C., Froggatt, K. and Vaughan, S. (2008) Ascertaining Wishes: A Good

Practice Guide. London: Counsel and Care.

There is a 2008 report mainly on advance directives, by the US Department of Health

and Human Services, to Congress, which advocates a move towards a more planning
and less legally oriented route:
DHHS (2008) Advance Directives and Advance Care Planning: Report to Congress.
Washington DC: U.S. Department of Health and Human Services.
http://aspe.hhs.gov/daltcp/reports/2008/ADCongRpt.pdf (accessed: July 29, 2009).

I also think highly of the chapter on advance directives in Csikai and Chaitin’s
American book on ethical decisions in palliative care social work:
Csikai, E., & Chaitin, E. (2006). Ethics in end-of-life decisions in social work
practice. Chicago: Lyceum Books.
Malcolm Payne