Advance care planning: "Let's get talking"

Advance Care Planning
“Let’s get talking”
Dr Jo Poultney, Dr Sarah MacLaran, Dr Julia Grant
Consultants in Palliative Medicine, Coventry and Warwickshire
Care And Support Towards Life’s End
Coventry and Warwickshire

1. Let’s get talking
2. Preparing to talk
3. Doing the talking

Let’s get talking:
Dr Jo Poultney

“I didn’t want that”
Short film from Dying Matters
www.dyingmatters.org

…is a process of discussion between an individual
and their care providers irrespective of discipline. If
the individual wishes, their family and friends may be
included. With the individual’s agreement, this
discussion should be documented, regularly reviewed,
and communicated to key persons involved in their
care.
Advance care planning: A guide for Health and Social Care Staff. NHS End of Life Care Programme 2007
ACP…

Key Terms
• Advance statement/ statement of preferences
• Advance Decision to Refuse Treatment
• Lasting Power of Attorney
“Living will” and “advance directive” are
old fashioned and no longer used

What would you want to happen to
you?

• To be free from pain
• To be treated the way that I want
• Not being connected to machines
• Not being a burden to my family
• To die at home
• To have close family and friends near
• To maintain my dignity
• To have my financial affairs in order
• To say goodbye
• To have my family prepared for my death

What do people want?
• 78% Being free from pain and discomfort
• 71% Being surrounded by loved ones
• 53% Having privacy and dignity
• 45% Being in familiar surroundings and being in a calm and peaceful
atmosphere
• 63% To die at home
Sue Ryder July 2013 – A time and a place.
What people want at the end of life

Why is ACP important?
• Ensures clinical care is in keeping with the patients
preferences
• Encourages deeper conversations at an important
time
• Empowers and enables patients and family
• Facilitates shared decision making
• Encourages better provision of services related to
patients needs and pre-planning of care
• Can prevent unnecessary hospital admissions

“I think it is very helpful. It gives us a clear
indication of what people want. It gives us
confidence to speak on behalf of our residents to
doctors. I think it helps to establish a firm
understanding and subsequently support for and
from the family”
One care home manager’s view of ACP

“ using the advance care plan document provided
a focus….it acted as a catalyst to prompt
discussion…. To put into place the breathing
space kit, plan for tissue donation and funeral
arrangements. It did not make her death easier to
bear, but provided reassurance that their wishes
would and could be followed to the best of
everyone’s ability”
One specialist nurse’s view of ACP

“very caring staff, no-one had asked me before
what I want when I get really sick. It was really
great. It made me feel relieved”
A patient that had taken part in a
conversation about ACP

“even though we already know what he wanted it
was great to be given the opportunity to talk about
it and get it out in the open”
Relative of a patient that had written an
ACP

Impact of ACP on end of life care in elderly patients. Detering
• 154 patient of 309 randomised to ACP
• Wishes more likely to be known and followed
• Family members identified less stress, and anxiety
and depression
• Perceived patient and family satisfaction higher
K. BMJ 2010; 340:c1345

• On assessment of individual need
• When the patient asks
• Life changing event eg death of a spouse
• Following a new diagnosis of life limiting condition
• Multiple hospital admission
• On admission to a care home
• In conjunction with prognostic indicators (SPICT)
When to consider ACP

SO WHY AREN’T WE
OFFERING ACP MORE?

‘It is always wise to look ahead,
but difficult to look further than you can see’
Winston Churchill

Difficulties
• Lack of time
• Prognostication
• Difficult discussions/ need for advanced
communication skills
• Practical challenges with documentation

Preparing to talk:
Dr Sarah MacLaran

www.c-a-s-t-l-e.org.uk

Examples of Resources
• A Gift to Your Family
• Your Values and Future Preferences
• Planning for your Future Care
• PPC (Preferred Priorities for Care)
• ADRT (Advance Decision to Refuse
Treatment)

Doing the talking:
Dr Julia Grant
Consultant in Palliative Medicine
julia.grant@geh.nhs.uk

Objectives
» Appreciate the holistic nature of ACP
» Identify triggers for discussion
» Demonstrate understanding of the factors and
influences that can affect patient choices
» Explain the principles of effective listening and
information giving including the importance of
verbal and non verbal cues

» 64 year old gentleman with secondary progressive MS
and complications
– PEG feeding
– Very limited physical ability
» Frequent chest infections requiring antibiotics
» Emergency admission
» Fatigue, breathless, unable to communicate wishes
» Ventilation considered- medical team initially feel this
may not be in his best interests
Case

Case
• Referral to SPCT
• Discussion with wife: previously requested any life
prolonging Rx. Grandchild expected in next few
weeks.
• Few days ventilatory support
• Home with SPCT input for a short time, DN, GP
• Further RTIs over next 12 months
• On 3rd admission, patient declines ventilatory
support

Case
» On 4th admission, decision to move to hospice
» Further discussions about values, beliefs and
wishes about the future
» Discharged after 2/52
» Further RTI
» Remained at home with antibiotics via PEG
according to wishes
» Deteriorated and died at home

Multiple Sclerosis
» Vast majority of deaths are from unrelated
conditions
» Proportion of deaths from MI, stroke,
malignancy similar to general population
» 50% of patients with advanced MS die from
complications of chronic disease

» Voluntary process
» Patient-centred care
» Feelings, beliefs, values
» Dignity
» Tennis, not darts

Why is it difficult?

How do we do it?
• Verbal cues
– Worries about who will care for me
– Worries about cognitive decline or
communication difficulties limiting ability to
make choices or express them
– Bad experience
• Nonverbal cues
– facial expressions, eye contact, tone of voice
– body language, posture

Preparation
» Environment: private, comfortable
» Right people?
» Language, aids, printed information
» Timing
» Knowledge of patient, condition, treatment
options, prognosis, likely scenarios and
consequences of options, social situation

When should we not do it?
» Patient lacks capacity
» When levels of distress are high and this can
wait
» When the patient gives clear verbal or non
verbal cues that they are not willing to engage

How do you start?
» “How do you feel things have been going recently?”
» “You have not been as well over the last few months… is this
something you have been concerned about?”
» “Is…. something you’d like to talk about?”
» “Can you tell me what the most important things are to you at
the moment?”
» “What fears or worries do you have about the future?”
» “What do I need to know about you as a person to make sure I
give you the best possible care?”
» “Are you the sort of person who likes to know exactly what is
happening with their condition and plan ahead….”
» “What would give you the most comfort when your life draws
to a close?”

Exploring understanding of ACP
» “Have you given any thought to what you might
want when you are more unwell?”
» “Are there things you might want to happen or
not happen when you die?”
» “Did you know that there are ways we can
record what is important to you to help ensure
that people know what you want?”
» Consider vignettes

Communication skills: 1
» Open questions at the start, closed questions to
clarify
» Listen, be present, accept patient as they are
» Go at the patient’s pace
» Checking ambiguous terms “I don’t want any
heroics”
» Avoid euphemisms
» Reflecting important words or concepts
» Summarising: I am listening, checking you have
understood correctly

Communication skills: 2
» Body language: open, mirroring
» Pauses
» Accept feelings
» Empathy and empathic responses: “you looked
upset when you mentioned…”
» Acknowledge emotions and concerns
» It is okay for the patient to be upset
» It is okay to not have all the answers
» It is okay to park discussion and return at another
time

Ending the conversation
» It should be a process
» Patient cues: verbal and non verbal
» Summarise and agree what to do next
» Document
» Plan for review

Self care
» Be kind to yourself: some have a natural ability,
some have to learn
» Tune into yourself: helps you to manage the
other person
» Acknowledge your own feelings to yourself
» Reflect and debrief
» Clinical supervision
» Looking after yourself

Summary
» ACP is an important part of holistic patient care
which allows patients to express preferences
about care: what they do and don’t want to
happen and the people important to them
» Resources to support staff, patients and families
are available through the CASTLE website
» Good communication skills are essential

References
» RCP. Advance Care Planning. Concise Guidance
to Good Practice Series. Number 12. RCP 2009
» www.c-a-s-t-l-e.org.uk

Advance care planning: "Let's get talking"

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