Care And Support Towards Life’s End
Coventry and Warwickshire
Advance Care Planning“Let’s get talking”
Dr Jo Poultney, Dr Sarah MacLaran, Dr Julia GrantConsultants 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
Advance Care Planning
Care And Support Towards Life’s End
Coventry and Warwickshire
Let’s get talking: Dr Jo Poultney
Care And Support Towards Life’s End
Coventry and Warwickshire
Short film from Dying Matters
www.dyingmatters.org
“I didn’t want that”
Care And Support Towards Life’s End
Coventry and Warwickshire
…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…
Care And Support Towards Life’s End
Coventry and Warwickshire
• 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
Key Terms
Care And Support Towards Life’s End
Coventry and Warwickshire
Care And Support Towards Life’s End
Coventry and Warwickshire
What would you want to happen to you?
Care And Support Towards Life’s End
Coventry and Warwickshire
• 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
Care And Support Towards Life’s End
Coventry and Warwickshire
• 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
What do people want?
Care And Support Towards Life’s End
Coventry and Warwickshire
• 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
Why is ACP important?
Care And Support Towards Life’s End
Coventry and Warwickshire
“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
Care And Support Towards Life’s End
Coventry and Warwickshire
“ 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
Care And Support Towards Life’s End
Coventry and Warwickshire
“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
Care And Support Towards Life’s End
Coventry and Warwickshire
“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
Care And Support Towards Life’s End
Coventry and Warwickshire
• 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
Impact of ACP on end of life care in elderly patients. Detering K. BMJ 2010; 340:c1345
Care And Support Towards Life’s End
Coventry and Warwickshire
• 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
Care And Support Towards Life’s End
Coventry and Warwickshire
SO WHY AREN’T WE
OFFERING ACP MORE?
Care And Support Towards Life’s End
Coventry and Warwickshire
‘It is always wise to look ahead, but difficult to look further than you can see’
Winston Churchill
Care And Support Towards Life’s End
Coventry and Warwickshire
Difficulties
• Lack of time• Prognostication• Difficult discussions/ need for advanced
communication skills• Practical challenges with documentation
Care And Support Towards Life’s End
Coventry and Warwickshire
Preparing to talk:Dr Sarah MacLaran
Care And Support Towards Life’s End
Coventry and Warwickshire
www.c-a-s-t-l-e.org.uk
Care And Support Towards Life’s End
Coventry and Warwickshire
Care And Support Towards Life’s End
Coventry and Warwickshire
Care And Support Towards Life’s End
Coventry and Warwickshire
Care And Support Towards Life’s End
Coventry and Warwickshire
Care And Support Towards Life’s End
Coventry and Warwickshire
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)
Care And Support Towards Life’s End
Coventry and Warwickshire
Care And Support Towards Life’s End
Coventry and Warwickshire
Doing the talking:Dr Julia GrantConsultant in Palliative Medicine
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
» 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
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
Advance Care Planning
» Voluntary process» Patient-centred care» Feelings, beliefs, values» Dignity» Tennis, not darts
Care And Support Towards Life’s End
Coventry and Warwickshire
Why is it difficult?
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
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?”
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
Care And Support Towards Life’s End
Coventry and Warwickshire
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
Care And Support Towards Life’s End
Coventry and Warwickshire
References
» RCP. Advance Care Planning. Concise Guidance to Good Practice Series. Number 12. RCP 2009
» www.c-a-s-t-l-e.org.uk
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