Day 2 - Bradford & Airedale Palliative Care

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Communication Skills
&
Advance Care Planning
Bradford & Airedale
Managed Clinical Network
End of Life / Palliative Care
Education Programme
Aim
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To discuss and review the principles of
effective communication
To explore and understand the principles
of Advance Care Planning and Preferred
Priorities of Care
Ground rules
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Confidentiality
Participation
Respect for others’ opinions
Permission to take time out
Mobile phones on silent
Anything else? …
Communication Skills
Case study 1
Case study 1
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Jane Williams lives alone; she is 60 with known
ca lung and bone metastases. Admitted to
hospital several days ago for pain control.
She has 1 son Scott who lives 25 miles away, he
can only visit 2-3 times a week as he has no
transport, his partner is pregnant & they have 3
children.
Jane’s condition deteriorates with increasing
pain, confusion and hallucinations. Unknown to
ward staff she has been phoning Scott overnight
confused & distressed.
Case study 1
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The following day Scott arrives on the ward. He
is angry as he says no one will give him
information over the phone about his mothers’
condition. He is demanding to speak to the
medical staff as he wants to know “what is going
on” with his mother.
There are no doctors available to speak to him.
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What are the issues?
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What do you do?
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Anger
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Common emotion – perceived loss of control
Often accompanied by feelings of guilt or
depression
Often misdirected towards health care
professionals; can be angry at what we
represent
To deny patients / family the right to be
angry in distressing circumstances is naïve
and disrespectful
What is Advance Care
Planning?
Advance Care Planning
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What is advance care planning?
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Why has it risen on the agenda nationally?
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How can we make it happen?
Advance Care Planning
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A process of discussion between an individual and their
care providers
Last phase of life (up to 1year)
The process is voluntary
The content should be determined by the individual
with agreement discussions should be:
documented
regularly reviewed
communicated to key persons involved in their care
National perspective
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Choice Agenda
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End of Life Strategy (2008)
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NICE Supportive & Palliative Care (2004)
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Darzi
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Mental Capacity Act (2005)
ACP – why is it important?
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Not yet getting it right with care towards
the end of life
Pre-planning of care is a means to
improve this
Research evidence that it is of benefit to
patients
What might be included in an ACP
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Persons understanding of their condition and likely
progression
Who to talk to in the event of not being able to
communicate
Lasting Power of Attorney (LPA)
Advanced Decision to Refuse Treatment (ADRT)
Health care preferences : CPR, Artificial nutrition,
ventilation, life sustaining treatments
A will and where its kept
Where & how you would like to be cared for
Place of death
Any wishes for after death e.g. tissue donation
What could be included….
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“If I am being washed, I prefer showers to baths
I am allergic to lanolin; please don’t put me in lambswool
clothes or give me hand cream with lanolin in it
I hate boiled eggs, and I love Bovril
I want to stay at home as long as I can
I don’t like EastEnders. Never have. Never will.
I like the Rolling Stones. And I like The Archers
I love dogs
I am frightened of injections and needles
Please could my grandson look after the cat?”
Advance Care Planning and the
Mental Capacity Act
Advance
Care planning
ADRT
Statement of
wishes and
preferences
Lasting power
Of attorney
Advance Decisions to Refuse
Treatment
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Use to be called ‘living wills or advanced
directives’
Requirements quite specific in stating exactly
which treatments and what circumstances
Have to be in writing if they are refusal of life
sustaining treatments
Must acknowledge that refusal has the potential
to limit life
Only come into force when an individual loses
capacity
Are legally binding if applicable
Lasting Power of Attorney
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Nominating a person (whilst you have
capacity) who can legally make decisions
on your behalf once it is judged you do not
have the capacity to make this decision
yourself
Can be for property or personal welfare
Can be for some or all decisions
Must be registered with OPG to be legally
binding
LPA - costs
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£120 to register
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Exempt if income < £12,000
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Full fee if income > £16,500
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£25 to search register for an LPA
Advanced statements of wishes
and preferences
Can be verbal only
 Best practice is to agree with patient to
document them somewhere so they can
be communicated and acted upon
- could be in medical or nursing notes
- could be in PPC document
 Used to make best interest decisions on
behalf of patients
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PPC Document
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Requires explanation and guidance
intended to be filled in by the individual
Intended to be patient held
Best Interest Decisions
MCA STATUTORY CHECKLIST
• Not merely by reference to age, appearance, condition, or aspect of
behaviour,
• Consider:
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Person’s past & present wishes & feelings, beliefs and values (including any
written statement)
Any other factors patient would consider if able to
• Take account, if practicable, of the views of:
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Any holder of an LPA or any Court Appointed Deputy
Anyone named by patient as someone to be consulted
Anyone engaged in caring for patient or interested in his welfare
Local Experience
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Most patients value the discussions
Most patients have want you to document their
wishes in medical records and communicate it to
others involved in their care
Most patients don’t want to make an LPA or
ADRT
Most patients have not wanted to use the PPC
document
People can usually express a preference for
where they would like to be cared for or die
ACP - Making it happen
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Identifying patients in a timely fashion
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Having knowledge of how an illness may affect a
person in the long term
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Ensuring the individual is given the opportunity
to have discussions if they wish
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Who is best placed to have these discussions
Mental Capacity Act Quiz
Understanding Advance
Care Planning (ACP)
&
Preferred Priorities of
Care (PPC)
Case Study 2
Michael is a 60 year old gentleman who
presented to his GP with difficulties in
carrying out his job as a painter and
decorator due to weakness in his hands
and difficulty climbing a ladder.
Subsequent investigations via neurologist
revealed a diagnosis of Motor Neurone
Disease. He understood from what he was
told at the time of diagnosis that his likely
life expectancy was 9 -12 months.
Question 1
WHAT SORT OF CHOICES IS MICHAEL
LIKELY TO BE FACED WITH IN THE
NEXT 12 MONTHS?
CHOICES – health care
who
PROGRESSIVE
WEAKNESS
where
Need for care
when
DIFFICULTY SWALLOWING
?PEG
HOSPITAL ADMISSION
OTHER TREATMENTS
WEAK
RESPIRATORY ?NIPPV
MUSCLES
CHEST INFECTION - ? treat
WEAK SPEECH
DIFFICULT COMMUNICATION – WHO will help make decisions
CPR
PLACE OF DEATH
KEY MESSAGE
Some choices are disease/condition
dependant
All choices are personal
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To help a person make choices you need to know:
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what the likely/possible progression and prognosis
of the disease
The person, what they know and understand, how
they like to make choices
POSSIBLE SCENARIOS
Don’t want to think about it or plan
Make decisions as I go along
If my life is intolerable I don’t want it prolonging
Don’t know if I want PEG or Ventilation – depends on how I am at the time
Definitely don’t want NIPPV
Don’t know what I may want at a time when I can’t communicate
I Would want my wife to make these decisions for me
What Michael Decides
Michael decides to make an advance care plan
stating some of his preferences around type of
care.
He also makes a statement ….
“If I become dependent on others for all my daily
care needs and I am unable to communicate my
wishes I would not want treatment for illnesses
which would extend my life such as antibiotics
for chest infections, artificial feeding/ fluids or
support for my breathing... I would want to be
kept comfortable and die with my family around
me at home if possible”
What Michael Decides
Makes an
ADVANCE DECISION TO REFUSE TREATMENT
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PEG feeding
NIPPV
What Happens Next
Over the next six months he becomes
progressively weaker and more dependent
on his wife and district nurses to provide
care for him in his home to which he had
become confined.
Develops some difficulties with swallowing
and there are concerns about his nutrition.
Question 2
HOW WOULD YOU APPROACH THIS
SITUATION?
KEY MESSAGES
KEEP COMMUNICATING!
ADRTs do not become active until a person
has:
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Lost CAPACITY to make or communicate a specific
decision
The MCA Code of Practice states:
Every effort must be made to enable a person
to communicate their wishes
The story continues
2 months later Michael has lost his ability
to communicate with speech and is unable
to use communication aids as he does not
have the muscular dexterity.
Developed problems with shortness of
breath, which are likely to be due to his
MND.
Question 3
IF YOU WERE CARING FOR MICHAEL
HOW WOULD YOU PROCEED?
KEY MESSAGE
ADVANCE CARE PLANS NEED
APPROPRIATE, TIMELY ACTION TO
ENABLE THEM
CHOICES IN DYING
Understanding ACP and
the PPC
COMPLETING A PPC
Planning for the future
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Imagine or think of a patient in your care who has COPD
(or another chronic progressive illness) which is from
your point of view affecting the patients QOL significantly
and adversely
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You are visiting them to monitor their treatment and they
are now reasonably stable. You want to discuss
‘advance care planning’ with them.
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How would you approach this:
think about your general approach, how you would
approach such a discussion? what words or phrases
may be useful
Patient responses to ACP
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Has not and does not want to discuss future
choices and plans
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Wants to discuss some but not all aspects
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Would like to make a verbal statement about
their wishes
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Would like to document their wishes – PPC
document
Professionals – Approach to ACP
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Do you know what is likely to happen to
this patient in the future?
- immediate, hrs - days - weeks
- short term, weeks - months
- longer term, months - years
What would the patients preferences be in
these circumstances
Professionals – Approach to ACP
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Explore empathetically
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Suggest Realistic Goals
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Complete forms OOH/DNAR/PPC
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Review and revise periodically
How can we facilitate patient
discussion and choice?
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Listen and respond
General information leaflets
Presenting scenarios
Discussing patients views of how peers
have been cared for
Longer term raising public awareness and
encouraging them to discuss with family
members
KEY MESSAGES
ACP is a PROCESS
The Process takes different amounts of
TIME depending on the individual
The process needs MONITORING because:
People change their minds
Loss and Bereavement
Bereavement risks
Risk factors for complicated grief
Nature of death
Untimely within the life-cycle
Sudden & unexpected
Traumatic
Strengths and
vulnerabilities of the
carer / bereaved
Past history of psychiatric disorder (depression)
Personality & coping style (worrier)
Cumulative experience of loss
Nature of relationship
with the deceased
Overly dependent
Ambivalent (angry & insecure with alcohol
abuse, infidelity etc…)
Family & support
network
Dysfunctional family (poor communication, high
conflict)
Isolated
Alienated (perception of poor support)
Case study 4
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Gillian is 29 years old with metastatic
malignant melanoma
Recently had radiotherapy for brain
metastases
Multiple skin lesions, no further treatment
available
Re-admitted to hospital acutely, semiconscious with severe headaches, nausea
& vomiting.
Case study 4
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CT scan reports multiple brain metastases
which she has bled into
She has had 3 days of IV dexamethasone
with little / no improvement
Syringe driver insitu for symptom
management, however she continues to
complain of headaches and has varying
response levels
Case study 4
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Lives with her mum, dad & Ben (7 yr old
son)
She has limited contact with her ex-partner
Her parents are worried that she is not
improving and ask if she is dying. They are
also not sure what to tell Ben.
What are the issues?
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What do you do?
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Dealing with Difficult Questions
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Acknowledge difficult area and great deal
of uncertainty
Explore underlying concerns/fears
May be appropriate to discuss signs to
expect when death is approaching
Avoid dates!
Dealing with Difficult Questions
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Knowing helps patients / families set
realistic goals
Protecting patients / families from reality
can create more problems in the future
Truth about a patients future is vital if
patients are to be permitted the dignity of
how to spend their remaining time
Withholding/withdrawing treatment
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Follow the Mental Capacity Act and take
into account all factors including:
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person’s wishes, feelings, beliefs and values
views of those close to or caring for patient
Make sure that you can justify the decision
to withdraw / withhold as being in the
person’s best interests
Communicating with Children
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Children are pragmatic and often demand
information in a direct way
Same information needs as adults but
require it in easily understandable form
Children are as individual as adults.
Different ages assimilate information in
different ways
Communicating with Children
Parents often need help, guidance and
support to allow them to break bad news
 Children require and should receive same
ethical standards of honest information
 Natural feeling of protection can generate
situations of collusion
 Written information, books and websites
can be accessed for parents and children
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Case study 5
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Mr Ali is a 73 year old Bengali gentleman
who is unable to speak English.
He has a supportive family (2 wives; 2
daughters and 4 sons).
He was admitted to hospital 4 weeks ago
with pneumonia
Past medical history:
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Diabetes
Heart failure
Chronic renal failure
Case study 5
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During his admission he was diagnosed with
lung cancer which was discussed with the
family. They insist he must NOT be informed
under any circumstances as they say “he will
give up” A family member is present with him at
all times.
The family want to take him home
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What are the issues?
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What do you do?
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Collusion
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Act of love or need to protect?
Almost always avoidable if patients are
consulted first
Explore reasons for collusion
Assess the relatives understanding of
disease and its impact
Acknowledge the difficulty of relatives
situation
Collusion
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May worsen if professional insists that it is
his/her duty to inform patient and ignores
relatives concerns
Consider potential consequences and
harm of not telling:
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personal cost to relative
Isolation of patient
poor standard of health care
Dealing with collusion
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Negotiate access to patient to check their
understanding of situation
Promise not to give unwanted information
Arrange to talk again and raise possibility of
seeing together
It is very common to find that the patient is
aware and also colluding, or at least
suspicious of the truth
Cultural issues
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Interpreters – should be integral part of
care
Cultural awareness & understanding of
others beliefs, views etc….
Consideration of religious / spiritual needs
(seek assistance if needed)
Key Message
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Good communication is about listening
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Effective communication will improve with
experience
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