Care Planning and the
Mental Capacity Act
in Dementia
Dr. Fiona Randall
Earl Mountbatten Hospice, Isle of Wight
March 2012
1
Why this topic ?

EoLC Strategy: every patient to be offered a ‘care plan’

Relatively new terms/concepts - ‘care planning’ and
‘advance care planning’ (ACP) as interventions.

Care planning relevant to dementia, ACP less often.

Lack of clarity regarding nature of both interventions.

Lack of understanding of how the Mental Capacity Act
(MCA) influences care planning and advance care
planning

Lack of understanding of integral link between ACP and
the MCA.

All leading to poor practice in care planning and ACP.

Political & professional pressure to implement both.
2
Law and professional guidance

Mental Capacity Act 2005 Code of Practice
(guidance for public and professionals) - This is
effectively law so is not negotiable!

National End of life Care Programme 2011 on
‘Capacity, care planning and advance care
planning in life limiting illness’ - A guide for
health & social care staff. Online only

General Medical Council (GMC) guidance on
decision making in end of life care 2010.
What we will cover

The test for decision-specific capacity and its
centrality in decision making in dementia.

Dispel myths regarding ACP; its relationship to MCA

Distinction between decision-making versus care
planning for the future

Definition of care planning and issues arising

ACP: definitions and issues arising; benefits, harms
and risks; professional guidance

Overall ethical issues for us and the NHS
4
Decision specific test for capacity

Decision making capacity is assumed unless judged
lacking following the test

Stage 1: does the person (P) have an impairment or
disturbance of the mind or brain? If the answer is
yes:-

Stage 2: is that impairment sufficient to mean that P
is unable to make a decision for himself

P lacks capacity if he cannot understand relevant
information, retain it, or weigh it up, or communicate
his decision by any means.
5
Two distinct paths for decision making

If P has capacity for the decision in question, then
decision making is via the consent process with P.

If P lacks capacity, then, (unless an Lasting Power
of Attorney (LPA) was previously appointed for that
decision), the process is by making a best interests
judgement on P’s behalf, following the MCA process

Consider all the relevant circumstances plus
whatever can be known of P’s wishes, feelings,
beliefs and values.
What is ACP about?

ACP always done with patients who have mental
capacity to establish and express preferences.

So ACP cannot be done by those already severely
demented, or moderately demented and lacking
capacity regarding the issues under discussion.

Always been about patients with capacity
expressing preferences in advance of loss of
capacity in order to aid decision making only when
their capacity is later lost; then it informs decision
makers regarding what P’s wishes might have been.
7
Relationship of ACP to MCA

UK: ACP intimately related to MCA regarding
decision making for patients lacking capacity

ACP outcomes: advance statement; Advance
decision to refuse treatment (ADRT); LPA
appointment

Any written statement must be taken into account in
a best interests judgment for the patient lacking
capacity, including (but not limited to) advance
statements.

Statute law enabled ADRT for specified treatment,
and appointment of LPA for health and welfare.
8
ACP: Serious misunderstandings

Ubiquitous error: ‘advanced’ care planning, even
‘advanced decision’, BMJ 2011;342:d2110 and
‘advanced directive’, Minerva, BMJ 11.6.2011

Error of understanding – not ‘super’ care planning,
nor by those with ‘advanced’ skills!

What is care planning, what is a care plan?

Failure to distinguish ACP from care planning which
is not ACP: severely demented cannot do ACP, yet
Pall Med 25(3) 197-209 published ‘ACP intervention’
for people already severely demented.
- This was care planning, not ACP!
9
ACP is a subset of care planning

Outcomes of ACP are
advance statement,
ADRT, LPA.

Patients can achieve
these three outcomes
without ACP, though
not advisable
Care Planning
ACP
10
Decision making v. care planning for
the future

Decisions: actually made only at the time when they are
needed, (except ADRT by patient, binding later if valid
and applicable)

Decisions cannot be made now for future time and
circumstances; can only make a plan

Even ‘DNAR order’ is only advisory to decision maker at
the time.

Neither a previous ‘care plan’ nor a medical plan
regarding treatment escalation is binding on actual
decision maker at the time.

Law, HC ethics & GMC are about decision making now,
not care planning, (for now or for the future).
11
What is ‘care planning’ ? – National End
of Life Care Programme 2011
‘Care planning embraces the care of people with
and without capacity to make their own decisions.
It involves a process of assessment and person
centre dialogue to establish the person’s needs,
preferences and goals of care and making
decisions about how to meet these in the context of
available resources.
It can be oriented towards meeting immediate
needs, as well as predicting future needs and
making appropriate arrangements for contingency
plans to address these.’
12
Care Planning issues arising - 1

The definition fails to distinguish between
processes for patients with and without capacity,
as stipulated in law and professional guidance.

It fails to distinguish between decision making
now and care planning for the future; these are
ethically/legally different concepts.

Law & professional guidance relate to decision
making when the decision is needed, (not for
future).

Care planning - confusing; tries to make one
concept work for decision making now and also
future care planning.
13
Care Planning issues arising - 2

Surely care planning for ‘immediate needs’ of a
person (P) with dementia is effectively the consent
process if P retains capacity, and is the best
interests process if P lacks capacity for the decision
needed now.

Participation in care planning is ‘voluntary’ (NEoLC
Programme)

If a person with capacity declines to participate in
care planning, ‘their adequately informed consent
must be gained’ regarding any decisions ‘that result
from care planning.’

But if a person with capacity declines care planning,
how can care planning take place, and so how can
any decisions result from it?
14
Care Planning issues arising - 3

Care plan ‘documents the care and treatment
actions necessary to meet a person’s needs,
preferences and goals of care. These must have
been agreed with the person receiving care or by
those acting in the person’s best interests.’

Care plan requires agreement of patient, or those
close to patient if lacking capacity. Consider in
dementia.

Different from medical decision making: when doctor
judges that an intervention is clinically inappropriate
as harm and risk outweighs benefit, then a decision
can be made without patient agreement. This is
because doctor decides what treatment options to
offer patient with capacity, or consider for patient
lacking capacity.
15
Broader ethical issues arising

NEoLC programme definition and NEoLC strategy
imply that preferences will be met via the care
planning process and care plan

‘A care plan will be offered to every patient and
carer, to help ensure services are provided to meet
their needs and preferences.’ my italics

Patient / carer conflict, notably in dementia; choice v
cost-effectiveness; justice; professional
responsibility (for benefit>risk and harm and
resource allocation).
16
EoLC Strategy issues…

‘All people approaching the end of life need to have their
needs assessed, their wishes and preferences
discussed and an agreed set of actions reflecting the
choices they make about their care recorded in a care
plan.’ NEoLC strategy under care planning heading,
exec summary, my italics.

Dementia/loss of capacity largely ignored

Voluntariness regarding discussing future; patient/carer
conflict

Choices; choice v. cost effectiveness; justice; can we
afford to comply with all those ‘choices’ in dementia?

Professional responsibility – treatment decisions will not
be based merely on previously expressed ‘choice’.
17
ACP: GMC definition Part 1
‘The process of discussing the type of treatment
and care that a patient would or would not wish
to receive in the event that they lose capacity to
decide or are unable to express a preference,
for example……..’
OK so far,
and is clearly about only planning for future
loss of capacity.
18
ACP: GMC definition Part 2
‘It seeks to create a record of a patient’s wishes and
values, preferences and decisions, to ensure that
care is planned and delivered in a way that meets
their needs and involves and meets the needs of
those close to the patient.’ my italics
Not OK!

Only ‘decision’ possible for future is ADRT

‘Ensure that care is…delivered in a way that meets their
needs’: a plan doesn’t guarantee a future treatment or
care

Family involved only if patient wants them to be

ACP is about needs of patient, not ‘those close to the
patient’
19
ACP: NEoLC Programme definition
‘A voluntary process of discussion and review to
help an individual who has capacity to anticipate
how their condition may affect them in the future
and if they wish, set on record: choices about
their care and treatment and/or an ADRT in
specific circumstances, so that these can be
referred to by those responsible for their care or
treatment, (whether professional staff or family
carers), in the event that they lose capacity to
decide once their illness progresses.’ my italics
20
Issues with NEoLC definition

Use of term ‘choices’ as opposed to ‘preferences’
implies that patient can actually choose future care
and treatment

But this implication is incorrect as patients can
receive only treatment and care that staff consider
clinically appropriate/overall benefit at the time

The term ‘choice’ implies you can make a decision
now about what will happen to you in the future, but
(apart from ADRT) you can’t, so misleading.

RCP on ACP: it can’t guarantee a future
treatment/care

ADRT: must specify treatment, ‘may’ specify circs.
21
ACP: When?

NEoLC Programme: ‘following diagnosis of a life
limiting condition’. But at diagnosis of dementia,
Patient may already lack capacity for some ACP
issues!

But RCP e-b guidance: time will depend on
prognosis, pattern of disease progression & patient
willingness to engage – clinical judgment needed.

But RCP note: ‘ACP discussions should be initiated
in primary care or in the outpatient setting before
individuals become acutely unwell.’ Generally not
advised as in-patient in acute hospital situation.
22
ACP: Who?

RCP note: ‘the professional should have
adequate knowledge about the disease, treatment
and the particular individual to be able to give the
patient all the information needed to express their
preferences…’

NEoLC Programme: agree that staff must have
‘adequate knowledge of the benefits, harms and
risks associated with treatment or care options to
enable a person to make an informed decision’.
23
ACP: What information

Compare with consent; regarding future treatment
options patient will need essentially the same
information as would be needed for consent in
dementia

Ways of dying content: pneumonia; hospitalisation
issues; reduced food intake.

Regarding place of care and of death; patient (and
family if involved in discussion), need honest
information regarding what services are available

RCP notes: individuals should be advised that ACP
‘does not guarantee that their wishes will be
respected’ apart from valid & applicable ADRT
24
Potential benefits ACP in dementia

Provides info about patient’s wishes/ feelings/beliefs/
values

So patients are more likely to receive the treatment
and care (locations) they wish, once capacity is lost.
Avoid interventions patient wouldn’t want.

Avoid waste of resources, (acute admissions).

NEoLC Programme state limited evidence for;
- increased sense of control/hope
- enhanced relationships
- aid ‘transition to palliative care’
- increased satisfaction of bereaved carers.
25
Potential harms to patients - 1

Emotional trauma: loss of mental capacity and
independence is difficult or distressing to
contemplate

Information about future illness scenarios is often
unpleasant, (ways of dying content).

Family conflict: if family involved, patient and
family may disagree regarding future treatment
and especially place of care.

Patient’s views are the priority – not clear in GMC
definition or GSF Thinking Ahead document
26
Potential harms to patients - 2

Poor process of ACP intervention due to lack of
staff time, knowledge or skills – quality of ACP
almost entirely operator-dependent.

Confusion between care planning and ACP

Confusion regarding what ACP is, plus it is a
difficult intervention (timing, information,
communication), so sub-optimal process more
likely leading to overall harm.
27
Potential harms to patients - 3

Threats to voluntariness: political drive for
‘choice’, quality markers regarding place of care,
professional idealism, all likely to lead to
pressure/coercion to undertake ACP in
dementia and to make an advance statement.

Confidentiality breaches: widespread
misunderstanding that it is views of family which
are also sought, encouragement to ‘share’
advance statements between providers, little
regarding confidentiality in new NEoLC
Programme guidance.
28
Potential risks for patients - 1

Failure of patient to understand importance of
advance statement and that it will be used.

Unrealistic expectations, especially from NEoLC
wording regarding ‘choices’.

Unrealistic expectations of family if involved.

Failure to update, so current views misrepresented.
29
Potential risks for patients - 2

Inadequately informed preferences: worse than
no advance statement, but may happen as info
may not be given as complex, often unpleasant
and time resources needed.

Stress on achieving preferred place of death as
percentage % (quality marker): patients may be
pressurised into expressing ‘achievable’ choices

Or moved when imminently dying to place of
their choice, or ‘out of hospital’, including to
improve hospital mortality figures!
30
Care planning benefits

Care and treatment more likely to accord with
patient’s best interests once capacity is lost

May increase carer satisfaction.

Gives focus on patient’s wishes when has
capacity.

May avoid ‘crisis management’ and sub-optimal
decision making, especially out of hours.

May avoid waste of resources e.g. clinically
inappropriate admission to hospital
Care Planning harms/risks

Unrealistic expectations of patient and carers

Patient / carer conflict.

Carer guilt if plan not later implemented.

Failure patient and carers to understand only a
plan, so best interests decision will be needed
later.

Misunderstanding by staff: may adhere to ‘plan’
rather than make appropriate decision ‘now’ on
basis of best interests
Overall ethical issues for us & NHS

Cost-effectiveness: what patients and carers prefer /
choose may be more costly in manpower and money
than alternatives; opportunity cost to others

Justice: finite resources ought to be allocated
according to clinical need, not choice. Legitimate
needs of other patients may be overridden by
imperative to meet preferences of those with advance
statements.

Poor practice: due to confusion (re: care planning and
ACP) + NHS directives regarding care planning.

Do we really understand what care planning is and
how to make a care plan; are we offering care plans?
33