Communication Skills & Advance Care Planning Bradford & Airedale Managed Clinical Network End of Life / Palliative Care Education Programme
Transcript
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Communication Skills & Advance Care Planning Bradford &
Airedale Managed Clinical Network End of Life / Palliative Care
Education Programme
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Aim To discuss and review the principles of effective
communication To explore and understand the principles of Advance
Care Planning and Preferred Priorities of Care
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Ground rules Confidentiality Participation Respect for others
opinions Permission to take time out Mobile phones on silent
Anything else?
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Communication Skills
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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. Janes condition deteriorates
with increasing pain, confusion and hallucinations. Unknown to ward
staff she has been phoning Scott overnight confused &
distressed.
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Case study 1 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. What are the
issues? What do you do?
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Anger 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 nave and disrespectful
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What is Advance Care Planning?
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Advance Care Planning What is advance care planning? Why has it
risen on the agenda nationally? How can we make it happen?
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Advance Care Planning 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
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National perspective Choice Agenda End of Life Strategy (2008)
NICE Supportive & Palliative Care (2004) Darzi Mental Capacity
Act (2005)
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ACP why is it important? 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
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What might be included in an ACP 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
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What could be included. If I am being washed, I prefer showers
to baths I am allergic to lanolin; please dont 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
dont 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?
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Advance Care Planning and the Mental Capacity Act Advance Care
planning ADRT Statement of wishes and preferences Lasting power Of
attorney
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Advance Decisions to Refuse Treatment 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
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Lasting Power of Attorney 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
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LPA - costs 120 to register Exempt if income < 12,000 Full
fee if income > 16,500 25 to search register for an LPA
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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 Requires explanation and guidance intended to be
filled in by the individual Intended to be patient held
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Best Interest Decisions MCA STATUTORY CHECKLIST Not merely by
reference to age, appearance, condition, or aspect of behaviour,
Consider: Persons 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: 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
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Local Experience 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
dont 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
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ACP - Making it happen Identifying patients in a timely fashion
Having knowledge of how an illness may affect a person in the long
term Ensuring the individual is given the opportunity to have
discussions if they wish Who is best placed to have these
discussions
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Mental Capacity Act Quiz
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Understanding Advance Care Planning (ACP) & Preferred
Priorities of Care (PPC)
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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.
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Question 1 WHAT SORT OF CHOICES IS MICHAEL LIKELY TO BE FACED
WITH IN THE NEXT 12 MONTHS?
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CHOICES health care PROGRESSIVE WEAKNESS Need for care who when
where DIFFICULTY SWALLOWING ?PEG WEAK RESPIRATORY ?NIPPV MUSCLES
CHEST INFECTION - ? treatHOSPITAL ADMISSION OTHER TREATMENTS WEAK
SPEECH DIFFICULT COMMUNICATION WHO will help make decisions CPR
PLACE OF DEATH
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KEY MESSAGE Some choices are disease/condition dependant All
choices are personal To help a person make choices you need to
know: what the likely/possible progression and prognosis of the
disease The person, what they know and understand, how they like to
make choices
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POSSIBLE SCENARIOS Dont want to think about it or plan Make
decisions as I go along If my life is intolerable I dont want it
prolonging Dont know if I want PEG or Ventilation depends on how I
am at the time Definitely dont want NIPPV Dont know what I may want
at a time when I cant communicate I Would want my wife to make
these decisions for me
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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
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What Michael Decides Makes an ADVANCE DECISION TO REFUSE
TREATMENT PEG feeding NIPPV
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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.
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Question 2 HOW WOULD YOU APPROACH THIS SITUATION?
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KEY MESSAGES KEEP COMMUNICATING! ADRTs do not become active
until a person has: 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
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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.
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Question 3 IF YOU WERE CARING FOR MICHAEL HOW WOULD YOU
PROCEED?
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KEY MESSAGE ADVANCE CARE PLANS NEED APPROPRIATE, TIMELY ACTION
TO ENABLE THEM
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CHOICES IN DYING
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Understanding ACP and the PPC COMPLETING A PPC
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Planning for the future 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 You are visiting them to monitor their treatment and
they are now reasonably stable. You want to discuss advance care
planning with them. How would you approach this: think about your
general approach, how you would approach such a discussion? what
words or phrases may be useful
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Patient responses to ACP Has not and does not want to discuss
future choices and plans Wants to discuss some but not all aspects
Would like to make a verbal statement about their wishes Would like
to document their wishes PPC document
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Professionals Approach to ACP 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
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Professionals Approach to ACP Explore empathetically Suggest
Realistic Goals Complete forms OOH/DNAR/PPC Review and revise
periodically
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How can we facilitate patient discussion and choice? 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
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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
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Loss and Bereavement Loss and Bereavement
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Bereavement risks Risk factors for complicated grief Nature of
deathUntimely 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)
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Case study 4 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, semi- conscious with severe headaches, nausea
& vomiting.
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Case study 4 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
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Case study 4 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? What do you
do?
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Dealing with Difficult Questions 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!
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Dealing with Difficult Questions 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
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Withholding/withdrawing treatment Follow the Mental Capacity
Act and take into account all factors including: persons 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 persons best interests
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Communicating with Children 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
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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 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: Diabetes Heart failure Chronic
renal failure
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Case study 5 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 What are the issues? What do you do?
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Collusion 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
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Collusion 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: personal cost to
relative Isolation of patient poor standard of health care
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Dealing with collusion 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
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Cultural issues Interpreters should be integral part of care
Cultural awareness & understanding of others beliefs, views
etc. Consideration of religious / spiritual needs (seek assistance
if needed)
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Key Message Good communication is about listening Effective
communication will improve with experience