Greco-WMA EoL Presentation Vatican-Nov2017

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Aula del Sinodo – Città del Vaticano
17 November 2017
Marco Greco, Ph.d.
President, European Patients’ Forum
END OF LIFE CARE:
SOME REFLECTIONS FROM A
PATIENT PERSPECTIVE
• European Patients’ Forum
– Umbrella organisation
– Active since 2003
– Independent & non-governmental
– EU patients’ voice across disease-areas
• Our members
– 74 patient organisations, both disease-specific
at EU-level and national coalitions
About the European Patients’ Forum
Our Vision!
“All patients in the EU have equitable
access to high quality, patient-
centred health and social care.”
Mission and vision
Our Mission!
“To ensure that the patient
community drives health policies
and programmes that affect them.”
• EPF does not have an official position on this
• This presentation: raising some issues, conveying
thoughts for reflection
EPF and end of life care?
• End of life is not only relevant for old people
• What matters to patients: Quality of life (but each individual is
different)
• Access: is appropriate care, e.g. Hospice available for all? Are best
practices in end of life care applied everywhere? Not the case
currently
• Pain medication for children = specific issue ?
• Staff shortages / expertise – lacking in both respects in many
settings – how can we expect staff to practise person-centred,
compassionate care if they are themselves burned out, or lack
expertise in EOL care?
Unmet needs
• Empowerment is “a multi-dimensional process that helps people gain
control over their own lives and increases their capacity to act on issues
that they themselves define as important” – also at political/policy level
• The process manifests itself in the interaction between patient and
system (people, structures….)
• It enables people to make meaningful choices – and to get involved to
the extent they wish (desire to opt out of decision-making also needs to
be respected)
• No-one is beyond empowerment, though some people may need more
support
• Empowerment is not about turning patients into “health consumers”
Patient empowerment: what it is
and what it is not
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• EPF Charter, point 1:
“I am more than my health condition.”
– Healthcare is fundamentally about human interactions. Being
treated with respect, dignity and compassion, and being seen
as a human being… is the starting point of empowerment.
• EPF survey on quality of care (2016) also strongly
highlighted this aspect
– Being listened to and taken seriously; the experts’ first question
should be to ask what matters to you – and take that as their
guidance
The importance of dignity
Empowerment charter
• EPF charter, point 3: I am an equal partner in
all decisions related to my health
– Partnership – shared decision-making is absolutely
fundamental – and this includes discussing the
goals together, planning together and reviewing
plans
– Relationship should be based on mutual respect,
information sharing and engagement in a dialogue
about treatment preferences but also patients’
values and priorities
The importance of dignity
Empowerment charter
• “Every moment counts” – narrative
(recommendations for person-centred, coordinated care at end of life –
complements general person-centred care recommendations)
Five domains:
1. “We work for my goals and the quality of my life and death
2. I have honest discussions and the chance to plan
3. The people who are important to me are at the centre of my support
4. My physical, emotional, spiritual and practical needs are met
5. I have responsive, timely support day and night “
Examples from our members
• Professionals work in a team with me
– I remain in control as much as
possible
• Continuing information and
explanation of unfamiliar concepts
• Preferences respected (e.g. where I
want to be)
• Right to change my mind at any point
• Decide what I want – and don’t want –
to happen
• I am helped to feel to feel safe, in
control of my pain, comfortable,
dignified, with as little fear as possible
The National Voices narrative
www.nationalvoices.org.uk/
Key reflections
Position on use of advance directives
• AE supports use of advance directives for wide range of decisions –
treatment, care, welfare, research, appointing proxies…
• AE supports concept of healthcare proxies and calls for legal
frameworks and appropriate safeguards for their involvement
• Difficulty of having right level of precision (neither too vague nor too
specific) à encourage people to write statements of values
• AE outlines certain criteria for validity of advance directives
• Patient’s wishes should always be ascertained – even when there is an
advance directive
• Need to increase availability and quality of palliative
care/services/facilities
Examples from our members
More info: http://www.alzheimer-europe.org
• Medical professionals need to shift to a shared decision-making
approach – this requires specific communication skills and
attitudinal change but also resources
• With patient and also the family
• Important to accept and discuss uncertainty (e.g. treatment
outcomes): patients are often more accepting of uncertainty
than professionals realise
• For the patient it is essentiale to have a conversation and “tobe
heard”
• Other HCP besides doctors can have a valuable role to play
here (e.g. due to lack of time) but doctors’ attitude is key
Communication patient/family & professionals
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• Patients want to be seen as a person,
not only a diagnosis or number or a case
• Empathy and respect are key
• Holistic approach means attention to
psychological, emotional social, mental
and family aspects of illness together
with the physical aspects
• End of life care is not as well developed
as it could be – important gaps and
inequities => our role
• Services need to be co-created with
patients and families as partners
Concluding remarks
Human relationships are at the core of healthcare
From doing “to”…to doing “with”
“Patient-centred care”…
… change in medical culture
“Patient-driven care”?
“I am the most
important
member of my
care team”
“to define the liberty of all,
not to mandate our own moral code”
U.S. Supreme Court
in
Planned Parenthood of Southeastern Pennsylvania v. Casey
@eupatientsforum
/EuropeanPatientsForum
THANK YOU