yolanda w.h. penders · yolanda w.h. penders challenges in communication about the end of life with...
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Yolanda W.H. Penders
Challenges in communication about the end of life with older people and people with dementia
[email protected] 17/03/2017
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Communicating about the end of life: why, what, when
• Talking about the end of life enables people to make their wishes known about their care
• Topics can include
– Treatment goals and preferences
– Preference for place of care or place of death
– Proxy decision-makers
– Circumstances in which people do or do not wish to be resuscitated
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Communicating about the end of life: why, what, when
When to talk? The ‘right time’ is hard to define!
• Healthcare professionals don’t want to cause undue distress by talking about the end of life early in the disease trajectory
• BUT wait for an adverse event as a ‘trigger’ and you may miss your chance entirely!
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Also known as: Advance care planning
“Advance care planning is a process of communication by which a person may make their wishes and goals for future care known to their healthcare providers, informal carers and next-of-kin, anticipating future health issues and potential loss of decision-making capacity.”
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Methods
• GP Sentinel networks
– Retrospective survey via network of general practitioners about deceased patients
– Belgium, Netherlands, Italy and Spain
• Dying Well with Dementia
– Retrospective surveys by GP, nursing home staff and next of kin about deceased nursing home residents
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Trends in communication
Are there trends in the rate of occurrence of advance care planning for older people (65+) in
Belgium and the Netherlands between 2009 and 2014?
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However, differences between patient groups increased
In Belgium, non-cancer patients, the oldest old (85+) and people with dementia showed smaller
increases in % GP aware
==
Increasing inequality?
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The role of family carers
Involving family in communication has many advantages:
- They are likely to become proxy decision makers
- The impact on family plays a role in many decisions about end-of-life care (e.g. when the patient does not want to “be a burden” to family)
- They experience uncertainty about their loved one’s wishes as a burden
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Communication about:
• Diagnosis
• Prognosis
• Approaching the end of life
• Advantages and disadvantages of treatments
• Options for end-of-life care
• Spiritual/existential issues
• Psychological or social issues
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Sample
• 65+ (median age between 83 and 87)
• Between 13% (Netherlands) and 41% (Italy) had dementia
• Most common causes of death were cancer (BE: 44%, IT:26%, NL: 59%) and cardiovascular disease (BE: 22%, IT: 32%, NL: 16%)
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Communication with family more frequent than or as frequent as communication with older people themselves
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Belgium Italy Netherlands
% w
ho
co
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un
icat
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≥1 t
op
ic
Patient Family
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Number of topics discussed with family also higher in Belgium and Italy
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Belgium Italy Netherlands
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Patient Family
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• In Belgium and Italy, all topics were more likely to be discussed with the family than with the patient (p<0.001)
• In the Netherlands, only options for end-of-life care were more frequently discussed with the family than with the patient (p<0.001)
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Most frequently discussed topics: patient
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Belgium Italy Netherlands
Diagnosis Prognosis The end of life Treatment
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Belgium Italy Netherlands
Diagnosis Prognosis The end of life Treatment
Most frequently discussed topics: family
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Least frequently discussed topics: patient
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Belgium Italy Netherlands
Options for end-of-life care Psychological or social issues
Spiritual/existential issues
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Belgium Italy Netherlands
Options for end-of-life care Psychological or social issues
Spiritual/existential issues
Least frequently discussed topics: family
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Communication with family carers can be a solution for people with dementia
However, in practice this does not always
work well…
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Communication with people with dementia in Belgium is low
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Preferenceproxy decision-
maker
Preferenceplace of death
Preferencemedical
treatment
Primarydiagnosis
Physicalsymptoms
Psychologicalsymptoms
Options forpalliative care
Mild dementia Severe dementia
Sudden and non-sudden deaths
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A preference for a proxy decision-maker was known in only 17% of cases for people with mild
dementia and 9% of people with severe dementia in Belgium
This is lower than for older people in general, even though people with dementia have more
need of a proxy decision-maker
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28% of family carers not aware next-of-kin had dementia at death
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Mild dementia Moderate dementia Severe dementia
Aware Not aware
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28% of family carers not aware next-of-kin had dementia at death
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Milddementia
Moderatedementia
Severedementia
Aware Not aware
Awareness less likely - the longer the
admission - the longer after
admission dementia occurred
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To do’s:
• Communicate with people with dementia – start early!
• Communicate not just about physical symptoms, but also psychosocial issues and options for end-of-life care
• Keep family in the loop, especially family of nursing home residents
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Yolanda W.H. Penders
Challenges in communication about the end of life with older people and people with dementia
[email protected] PDF version of ‘Old age, dementia and end-of-life care’ available on request