advance care planning: "let's get talking"

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



1. Let’s get talking

2. Preparing to talk

3. Doing the talking

Advance Care Planning



Let’s get talking: Dr Jo Poultney



Short film from Dying Matters

www.dyingmatters.org

“I didn’t want that”

http://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…



• 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



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



• 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?



• 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?



“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



• 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



• 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

http://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 GrantConsultant in Palliative Medicine

[email protected]



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



Advance Care Planning

» 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"

Health & Medicine

warwickshire care

lifes end coventry

clinical care

care providers

end of lifewhat

nhs end of life care

preplanning of care

care home managers