Transcript End of Life Care in Primary Care

End of Life Care
in
Primary Care
7th June 2011
Stephen Louw
Consultant Geriatrician, Freeman
…nightmare scenario for any of us…
• Frail patient: severely demented; chair bound
• Living in a nursing home among carers she
knows
• Gets pneumonia/UTI
• Gets bunged into an ambulance at 11pm to A&E
• Seen by ‘strangers’; has blood taken; X-rays
done; moved from trolley Medical Unit; thence to
ward at another hospital. From bed to bed.
• Given antibiotics & subcut fluids. Nil by mouth
for few days.
• After a few days...reflection: Recognition that the
patient is very frail, unlikely to survive
• ELCP.....dies in unfamiliar surroundings
…nightmare scenario for any of us…
... a more extreme (recent) case:
Mr D 76y
Admitted 12/2/2011 21:10
Nursing Home since after Christmas
Seen in A&E
• General deterioration
• Vomiting x 1 day - ? coffee ground (GP
referral)
• Less responsive for 4 wks
Mr D
PMH
• High grade glioblastoma - debulked Aug
2010; Brain-stem stroke at surgery
• PEG feeding since Sept 10
• Long-term catheter.
• Hoist for transfers; bed-bound; max
assistance for all cares.
• Rx: anti-epileptics
Mr D
•
•
•
•
•
•
Moved to Acute Medical Unit
Unresponsive to pain
T36.2; P95; BP 140/80; Sats 93% RA
Chest clear; Urine malodorous
Unequal pupils; bulging brain
‘Generally stiff’; Flexion contraction L arm
& leg
Mr D: glioblastoma
• Urine dip: +ve nitrate; WBC: N; CRP 133.
Urea N
• Diagnosis: UTI
• Rx: gentamycin; ertapenem
Mr D
Moved to Short Stay Winter Pressures Ward
• Remained drowsy.
• Put on LCP after 2 days.
• Died after 3 further days.
This sort of scenario (Mr D) should not be
happening in the UK in 2011.
Two compelling documents:
• GMC directive (2010): Treatment and care
towards the end of life
• NHS directive (May 2011): Capacity, Care
planning, and advance care planning in life
limiting illness.
Several others.
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
Principles
 Equalities and human rights
 Presumption in favour of prolonging life
 Presumption of capacity
 Maximising capacity to make decisions
 Overall benefit
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
Decision-making models
• Patients who have capacity to decide
• Adults who lack capacity to decide
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
For the purposes of this guidance,
patients are ‘approaching the end of life’ if
likely to die within the next 12 months.
Includes patients
whose death is imminent (expected within a few hours or days)
and those with:
(a) advanced, progressive, incurable conditions
(b) general frailty and co-existing conditions that mean they are
expected to die within 12 months
(c) existing conditions if they are at risk of dying from a sudden acute
crisis in their condition
(d) life-threatening acute conditions caused by sudden catastrophic
events.
NHS Guide for Health and Social Care Staff
Published 17 May 2011
http://www.endoflifecareforadults.nhs.uk/assets/downloads/ACP_booklet_2011_Final_1.pdf
• Patients must have
more choice about
their care
• Cooperation between
NHS and Social Services
• Increase the quality and
range of information
made available to
individuals
NHS Guide for Health and Social Care Staff
Published 17 May 2011
• Builds on DoH’s “End of Life Care Strategy
(2008)”
Aim
“To support the development of protocols to
help capture, document and share
accurate information on the person’s
preferences.”
NHS Guide for Health and Social Care Staff
Published 17 May 2011
Contents
• Care Planning
• Assessment of Capacity
• Defining ‘Best interests’
• The role of Independent Mental Capacity
Advocates
• The Role of the Court of Protection
NHS Guide for Health and Social Care Staff
Published 17 May 2011
Contents (cont’d)
• Advance Care Planning
• Advance Statements
• Advance Decisions to Refuse Treatments
• Lasting Powers of Attorney
• The role of the Office of the Public
Guardian
NHS Guide for Health and Social Care Staff
Published 17 May 2011
....some detail
Aim
“To support the development of protocols to
help capture, document and share
accurate information on the person’s
preferences.”
NHS Guide for Health and Social Care Staff
Published 17 May 2011
...some detail....
• Care Planning
• Assessment of Capacity
• Defining ‘Best interests’
• The role of Independent Mental Capacity
Advocates
• The Role of the Court of Protection
NHS Guide for Health and Social Care Staff
Published 17 May 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 centred 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 or contingency plans to address these.”
NHS Guide for Health and Social Care Staff
Published 17 May 2011
What are Care Plans?
• A document which sets out treatment actions to
meet a person’s
– Needs
– Preferences
– Goals of Care
• Must be agreed with the person receiving care
or by those acting in the person’s best interests.
(...raises issues of capacity assessment)
NHS Guide for Health and Social Care Staff
Published 17 May 2011
...some more detail....
• Care Planning
• Assessment of Capacity
• Defining ‘Best interests’
• The role of an Independent Mental
Capacity Advocate (IMCA)
• The Role of the Court of Protection
NHS Guide for Health and Social Care Staff
Published 17 May 2011
Assessment of Capacity
• Decision specific
• Eccentric/unwise decisions are acceptable
• Duty to ensure patient is helped in the
process to make their wishes known
(timing, support)
NHS Guide for Health and Social Care Staff
Published 17 May 2011
Assessment of Capacity
Two steps:
1.Confirm significant clinical diagnosis of
‘disease of mind or brain’
2.Perform functional test
a.
b.
c.
d.
Understand information
Retain information
Weigh information
Communicate their decision.
NHS Guide for Health and Social Care Staff
Published 17 May 2011
...some more detail....
• Care Planning
• Assessment of Capacity
• Defining ‘Best interests’
• The role of an Independent Mental
Capacity Advocate (IMCA)
• The Role of the Court of Protection
NHS Guide for Health and Social Care Staff
Published 17 May 2011
• If patient lacks capacity, decisions should
be made on behalf of the individual in their
best interests.
[MCA specifies the process and criteria for best
interests decisions.]
Can I avoid doing all this...?...(hassle factor ++)
NHS Guide for Health and Social Care Staff
Published 17 May 2011
4.3.6 Responsibilities of the decision maker when the person lacks
capacity
“During the care and treatment delivery process, many different people may be
required to make decisions or act on behalf of a person who lacks capacity
to make decisions for themselves.
The ‘decision-maker’ is usually the person responsible for the person’s care
at that time. This can be a relative or partner, but is often a health or social
care professional responsible for the individual’s care at the time (Mental
Capacity Act 2005, Code of Practice, chapter 5).
It is the responsibility of the decision-maker to work out what would be in
the best interests of the person who lacks capacity and to record how this
assessment was carried out.”
NHS Guide for Health and Social Care Staff
Published 17 May 2011
...some more detail....
• Care Planning
• Assessment of Capacity
• Defining ‘Best interests’
• The role of an Independent Mental
Capacity Advocate (IMCA)
• The Role of the Court of Protection
NHS Guide for Health and Social Care Staff
Published 17 May 2011
....some more detail...
• Advance Care Planning
• Advance Statements
• Advance Decisions to Refuse Treatments
• Lasting Powers of Attorney
• The role of the Office of the Public
Guardian
NHS Guide for Health and Social Care Staff
Published 17 May 2011
Advance Care Planning
A voluntary process
To set on record
Choices about care and treatment for the future
NHS Guide for Health and Social Care Staff
Published 17 May 2011
....Advance Care Planning:
may record individual’s preferences re:
• Personal goals or aspirations of care
• How they feel about
– their illness and prognosis
– the types of care or treatment available
– the types of decisions that may need to be
made about their care and treatment in future
NHS Guide for Health and Social Care Staff
Published 17 May 2011
Advance Care Planning
A voluntary process
To set on record
Choices about care and treatment for the future
May include advance decisions to refuse treatment in
specific circumstances
Mental Capacity Act (MCA 2005) provides for
= advance statements to inform decisions
= ADRT (legally binding)
= appointment of Lasting Power of Attorney
NHS Guide for Health and Social Care Staff
Published 17 May 2011
....some more detail...
• Advance Care Planning
• Advance Statements
• Advance Decisions to Refuse Treatments
• Lasting Powers of Attorney
• The role of the Office of the Public
Guardian
NHS Guide for Health and Social Care Staff
Published 17 May 2011
Advance statements (are not binding)
• A written statement made by the person
before losing capacity regarding
Issues to be considered in the case of future
loss of capacity due to illness e.g.:
o the type of treatment they would want or not
want
o where they would prefer to live
o how they wish to be cared for.
NHS Guide for Health and Social Care Staff
Published 17 May 2011
....some more detail...
• Advance Care Planning
• Advance Statements
• Advance Decisions to Refuse Treatments
• Lasting Powers of Attorney
• The role of the Office of the Public
Guardian
NHS Guide for Health and Social Care Staff
Published 17 May 2011
Advance Decisions to Refuse Treatments
• Legally binding (to clinicians)
• Aim: to refuse specific treatments under specific
conditions
• Made in advance by a pt who has capacity
• May be verbal
• But if it includes ‘refusal of life sustaining
treatment’ it must be written (and include the
statement: ‘even if my life is at risk’).
• Comes into effect if pt loses capacity
NHS Guide for Health and Social Care Staff
Published 17 May 2011
....some more detail...
• Advance Care Planning
• Advance Statements
• Advance Decisions to Refuse Treatments
• Lasting Powers of Attorney
• The role of the Office of the Public
Guardian
General
Care
Planning
Is it legally
binding?
Advance
Care
Planning
(ACP)
No –
No – but
advisory only must be
taken into
account for
‘best
interests’
decisions
Advance
decisions to
refuse
treatment
Yes –
provided it is
legal and
applicable.
Takes the
place of
‘best interest’
decisions for
that specific
intervention.
NHS Guide for Health and Social Care Staff
Published 17 May 2011
By now you should have: Core Competencies
• Distinguish between ‘care planning’ and ‘advance care
planning’ – appreciate overlap
• Define Advance care planning and possible outcome in
terms of MCA
• Appreciate the need to assess and review pt’s capacity
to participate in care planning
• Know how to assess capacity
• Appreciate the need to protect and advocate for pt’s best
interests if they lack capacity
NHS Guide for Health and Social Care Staff
Published 17 May 2011
Core Competencies (Chapter 6)...cont’d
• Discussions should be patient-centred
• Importance of involving (where appropriate) those close
to the patient – recognise the limits of their decisionmaking powers
• Key principles of good practice in record keeping
• Appreciate when you yourself need to ask for advice
• Importance of giving a realistic account of services and
choices available to the patient
• Importance of having knowledge of risks and benefits of
treatments
• Understand that confidentiality should be respected.
Specific clinical challenges in Primary Care
for patients at the end of their life....
Mrs G
• 87y old; advanced Alz disease on
donepezil in a nursing home
• For the past 2 months: losing weight
• Clinically no obvious acute illness; seems
clinically dry
• Unable to assess whether she is
depressed or just severely demented
• Nurses say she is ‘hardly eating anything’
and ‘takes just a few sips of water’
Mrs G
• Should we put down a NGT?
• Should we send her to hospital ‘for a full
screen’?
• Should we give her subcut fluids for a few
days and monitor?
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
Principles
 Equalities and human rights
 Presumption in favour of prolonging life
 Presumption of capacity
 Maximising capacity to make decisions
 Overall benefit
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
14. Decision making model if pt has capacity
a. Doctor and pt make an assessment of pt’s condition,
taking into account medical history, pt’s views,
experience and knowledge.
b. Doctor uses specialist knowledge and experience and
clinical judgement (and pt’s views) to identify which
investigations and treatments are appropriate. Explain
and discuss with pt.
c. Pt weighs the potential benefits, burdens and risks of
various options and decides.
d. If pt asks for medically inappropriate treatment, the
doctor should explain why this is not appropriate.
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
15. If you assess that a patient lacks capacity to make a
decision, you must:
a. Be clear what decisions about treatment and
care have to be made
b. Check for ADRT
c. Enquire whether someone has legal proxy
rights
d. Take responsibility for deciding which treatment
to give (if no legal proxy exists)
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
16. Decision making model (if pt lacks capacity)
a. Doctor, with the pt (if they can contribute) and the pt’s
carer, makes an assessment of pt’s condition (medical
history, carer’s knowledge)
b. Doctor uses specialist judgement and evidence of pt’s
views (any sources) to identify which investigations and
treatments are clinically appropriate and likely to benefit
patient overall
c. If pt has advance decision or directive refusing a
particular treatment – doctor decides on applicability of
ADRT to current situation.
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
40 Weighing the benefits, burdens and risks
Benefits that may: prolong life, improve pt’s condition,
manage symptoms...
must be weighed against
the burdens and risks for that patient.
These are not always purely clinical considerations.
Note: If pt has capacity, they will reach their own views.
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
Meeting the pt’s nutrition & hydration needs
• You must keep your patient’s nutrition and
hydration status under review
• You must be satisfied that if necessary the pt is
given adequate help to enable them to eat and
drink
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
If pt refuses food or drink, or has problems eating
and drinking
• Address the underlying physical/psychological
causes
• If, even with support, their needs are not met,
consider ‘clinically assisted’ nutrition and
hydration
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
‘Clinically assisted nutrition and hydration’
• IV, NGT, PEG
• Evidence of benefits v risks at end of life is not
clear (113)
• Nutrition and hydration by tube or drip are
regarded in law as ‘medical treatment’.
– Listen to and consider views of pt and carers
– Explain that if it is considered of ‘overall benefit’ it will
always be offered
– If disagreement arises: seek ways to resolve it (47–49)
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
GMC’s concept of overall benefit
Weighing the benefits, burdens and risks
40: Benefits may: prolong life; improve condition,
manage symptoms. Weigh these against:
burdens and risks.
41: not just clinical – also ‘circumstances’
42: pt with capacity should be engaged
43: pt who lacks capacity: discuss with carers,
relatives re pt’s wishes, values and preferences.
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
Adults who lack capacity and are not expected
to die within hours or days
• You must provide clinically assisted N&H if it is
considered it would be of overall benefit to them
– Consider pt’s beliefs, values
– Previous requests for clinically assisted N&H
– Other views they have expressed about their care
• If you consider clinically assisted N&H not to be
of overall benefit, get a second opinion;
document decision making process.
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
Do Not Attempt Resuscitation Decisions
Mrs C
• 93y woman with dementia; long term
catheter and incont of bowels; help for
ADLs; in NH for 4 days after recent
discharge from ward.
• Should she have a DNAR order?
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
Do Not Attempt Resuscitation Decisions
129 When to consider DNARs
“If cardiac or respiratory arrest is an expected part
of the dying process and CPR will not be
successful...”
“It may also help if the patient’s last hours or days
are spent in their preferred place of care...”
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
Do Not Attempt Resuscitation Decisions
When to consider making a DNAR decision
130 CPR might be successful, but is not seen to
be clinically appropriate because of the likely
clinical outcomes...
Consider the benefits, burdens and risks of
treatment that the patient may need if CPR is
successful...
If the patient has an existing condition that
makes cardiac or respiratory arrest likely...
Mrs C
• 93y woman with dementia; long term
catheter and incont of bowels; help for
ADLs; in NH for 4 days after recent
discharge from ward.
• Admitted with cough; collapsed lung, AF.
• Should she have a DNAR order?
Mrs C
• 93y woman with dementia; long term
catheter and incont of bowels; help for
ADLs; in NH for 4 days after recent
discharge from ward.
• Admitted with cough; collapsed lung, AF.
• Daughter: ‘mum has been in hospital for
the last 7 weeks’
• Should she have a DNAR order?
GMC Guidance
Published 2010
Treatment and care towards the end of life: good practice
in decision making
Do Not Attempt Resuscitation Decisions
131If a patient is admitted to hospital acutely
unwell, or becomes clinically unstable at home
or other place of care and they are at
foreseeable risk of cardiac or respiratory arrest,
a judgement about the likely benefits, burdens
and risks of CPR should be made as early as
possible.
• “a judgement about the likely benefits,
burdens and risks of CPR”
• What are the clinical burdens of CPR?
– Intubation
– Transfer to ITU
– Ventilation – pneumothorax, pneumonia
– Ionotropes – renal ischaemia, liver ischaemia
– Cracked ribs
Mrs C
• 93y woman with dementia; long term
catheter and incont of bowels; help for
ADLs; in NH for 4 days after recent
discharge from ward.
• Should she have a DNAR order?
& GMC’s document
Essentially, the NHS and the GMC are
asking us to practice as good doctors:
Always to
• Respect the patient’s autonomy
• promote beneficence
• avoid maleficence.
The NHS and GMC are telling us: If you
ignore ethics, we will bind you with rules.
Local Initiatives
• Newcastle Care Homes Project
• Prof Claud Regnard – Deciding Right – a
regional approach t ADRTs for adults in
the North East (consultation document)