Vrijwilligers in de palliatieve zorg

End-of-life care
Concept and
introduction
De Bosschere Christine – IPLA 2014
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When it is no longer possible to cure, it is your duty to care!
C. Saunders , 1978
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De Bosschere Christine – IPLA 2014
What is palliative care?
Definition WHO : ‘Palliative care is an active total care for the incurable patiënt and his family
where every curative treatment isn’t usefull for the quality of life.’
(‘pallium’ or ‘ cloak’ ; ‘palliare’ : ‘protective with a warm cloak’)
‘total’ care for the terminally ill patiënt
• attention to the physical complaints
• psychosocial, emotional and spiritual support
Purpose : adding quality of life to the days
instead of adding days to the life;
focused to the patiënt, but allways in
relationship to his environment.
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De Bosschere Christine – IPLA 2014
4 pillars in palliative care
care for body, spirit and soul
Pain- and
symptomcontrol,
together with attention for
emotional and spiritual
problems are most important !
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De Bosschere Christine – IPLA 2014
Origins
 In United Kingdom, shortly after the Second World War –
Cicely Saunders was pioneer. She opened in 1967 first
palliative hospice.
 In the late eighties cores of palliative care are established.
 In 1990 in Brussel a first palliative unit (Sister Leontine).
 In 1990 : first federation Palliative care Vlaanderen.
 In 1995 : Palliative networks with funds from the federal
government and partially from the community.
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De Bosschere Christine – IPLA 2014
Federation Palliative Care
Brain about quality of ‘palliative care’
‘flattering’ when ‘heeling’ is no more possible…
Mission:  promotion and stimulation of quality of
palliative care
 stress the value of ‘home’care
 support persons providing care,
organisations and initiatives in developing a
culture of palliative care
 inspire the government
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De Bosschere Christine – IPLA 2014
Realistic model – EORTC:best
supportive care
Bonemetastases – painradiotherapy as analgesie
must be an option…
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De Bosschere Christine – IPLA 2014
5 most important objectives of
palliative care
effectly controlling pain and other symptoms
guaranteeing the personal, human dignity of the
person requiring care, by improving the largest
possible autonomy…
optimising the relationship between the patiënt,
the bereaved and the family, by means of discreet
guidance and support of both parties
questions regarding the meaning of life…
mourning support…
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De Bosschere Christine – IPLA 2014
The various palliative settings in Belgium
cf. studyvisits
4 forms of organisation of palliative care
receiving government funding (of course
different in varies countries)
 palliative home care teams
(home: most ideal place)- palliative care leave – premium – abolition of the non-refundable part of medical
expenses…
Last years : more and more not - cancers (MS, ALS,COPD,chronic hartdisease…)
 palliative day care centres
 palliative support teams
 at hospitals
 in nursing homes(NH) and rest homes
(centres for living and care :CLC’s)
(palliative butterflygroup, palliative carecoördinator, palliativef referent)
 palliative care units : the residential units
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De Bosschere Christine – IPLA 2014
Day care
centres
Pall. home
Care
Pall. care
Units
NHs &
ROBs
Hospitals
Networks: coordination centres
(n = 15)
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De Bosschere Christine – IPLA 2014
Residential units
Low threshold (oncology…)
Domestic environment
Workorganisation and rythm of life : time
(high staffing : 1,3 FTE nurse for one patient)
Pluridisciplinair team
admission criteria:-suffering from a progressive, terminal
disease
-prognosis for survival: few days to max.3
months
-agreement by the family and the patient
with the transfer to palliative unit, in which
examinations and all kinds of active curative
treatments are ceased
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De Bosschere Christine – IPLA 2014
Multidisciplinary working !
nurse
doctor : hospital doctor and family doctor
supportteam
pastor
psychologist
social assistant
relaxationtherapeutist
family
‘cloakworkers’, volunteers
…
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De Bosschere Christine – IPLA 2014
Volunteers in palliative care
assistance for the professionals/support
supporting
Physical
• care
tasks
• helpen with meal
• listening
• give attention
• support by walking
• playing a game
• hair care,…
• walk together,…
Praktical
• treat visitors
• kitchen work
• creating sphere
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Psychical
• care for flowers,…
De Bosschere Christine – IPLA 2014
Mourning
• support the family
• give praktical help
Journey in truth…: attitude
Right to hope
Hope is important to give meaning to this last
period.
Right to know that they are at the end of their
life.
Right to be surrounded by people who can offer
and openly discuss both of these ‘truths’.
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De Bosschere Christine – IPLA 2014
‘Total pain concept’
Cicely Saunders
Purpose :
comfort and quality of life!
Living until the end…!
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De Bosschere Christine – IPLA 2014
CURRENT ULTIMATE QUESTION
What makes your life, as a paliative sick
person, difficult to unbearable?
guideline to the path to offering help!
(Burvenich, 2006)
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De Bosschere Christine – IPLA 2014
Medical decisions in Belgium
Introduction-framework
De Bosschere Christine – IPLA 2014
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Law on euthanasia 28th May 2002
Stop : terms– active and passive
Group – of – 6
Leif-project - LDD : life - the right to dignified
dying
PALLIATIVE FILTER PROCEDURE ;
palliative supportteam-exploring conversationlimitation form -starting palliative care file message of the thruth…
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De Bosschere Christine – IPLA 2014
Group – of - 6
 assistance in suicide
 termination of life by administering lethal (deadly) means
without the patient’s explicit
request
 termination of life by intensivating pain and/or symptom relief
In literature ‘controlled sedation’ is sometimes added to the category ‘termination of life by
intensivating pain and/or symptom relief’. (but : untreatable character of the symptoms)
 NTD’s : non-treatment decisions
 Controlled sedation or palliative sedation
 + EUTHANASIA (the only concept regulated by the law)
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De Bosschere Christine – IPLA 2014
NON-TREATMENT DECISIONS : NTD’s
Two categories :
 On the one hand stopping (ceasing) a medically pointless treatment.
 On the other hand not starting up (neglecting) a medically pointless
treatment.
Example : DNR (do not reanimate – declaration)
NTD’s are usually included on so-called limitation forms or DNR protocols : code 1:
do not reanimate
code 2: not expanding therapy
code 3: building down therapy – stop!
Important :preliminary consent by the patient needed! The doctor is at least bound
to the obligation of information to the patient or their representative.
Doctor and patient decide together and the family is also heard.
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De Bosschere Christine – IPLA 2014
Termination of life by intensivating
pain and/or symptom relief.
Question : Does increasing Morphine® equal
committing euthanasia?
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De Bosschere Christine – IPLA 2014
The answer is much nuanced:
 Yes, if the doctor increases the Morphine®, at the patient’s request and
with the intention to cause death.
 No, if Morphine ® is increased without the patient’s request and only
with the intention of shortening life (without request : murder!)
 No, if Morphine® is increased for pain and symptom relief. Pain and
dyspnoea are almost the only indications for the use of Morphine®. The
life-shortening effect is not as big in practice!
 So :Administering painkilling medication with a possible life-shortening
effect is considered to be medically correct and belonging to the normal
medical practice.
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De Bosschere Christine – IPLA 2014
6.4
6.5 Assistance in suicide
physician assisted suicide
Consideration : psychiatrics…
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De Bosschere Christine – IPLA 2014
P.A.S
Controlled sedation or palliative
sedation : definition
Administering sedatives in dosages and
combinations required to decrease the terminal
patient’s consciousness necessary to
adequately control one or more refractory*
symptoms. (Broeckaert, B. , 2OOO)
* Refractary symptoms are ‘untreatable’ symptoms; These can be
physical as well as psychosocial, emotional or spiritual
symptoms.
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De Bosschere Christine – IPLA 2014
Objective :
Stopping the unbearable suffering.
The objective is symptom control.
This is part of ‘Medical actions’ * and can be done by any doctor.
Performing palliative sedation is part of the entrusted actions
by nurses under the doctor’s orders. *medical action : any action intended to or
supposed to intend to examine the condition of health of a human being, or tracking diseases and flaws, or making a diagnose,
setting up or implementing a treatment of physical or mental , real or supposed condition, or inoculation.
(no registration document is required)
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De Bosschere Christine – IPLA 2014
CONCRETELY : how?
I.V. or S.C. (if s.c. usually in a second pump)
also possible intermittently
mild sedation : Dormicum® sensitivity for benzodiazepines and also for
Dormicum® is very different individually
deep sedation: Pentothal® must IV and very slowly
For instance : for ethylitics because Dormicum® has no effect on them.
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1,5 - 2 days
Bladder purge!
Lying on the side (free airways)
Total care, also for beloved ones!
De Bosschere Christine – IPLA 2014
Indications (research 2006)
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Dyspnoea 38%
Pain 22%
Confusion – agitation 39%
Nausea – vomiting 6%
Bleeding 9%
General deterioration 20%
Fear and psychological stress 21%
De Bosschere Christine – IPLA 2014
Procedure palliative sedation :
may differ for various countries and hospitals
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De Bosschere Christine – IPLA 2014
fase 1
Procedure palliative sedation :
fase 2 and 3
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De Bosschere Christine – IPLA 2014
Euthanasia
Eu = good / thanasia = death
(greek)
Definition : the willful life-terminating actions by someone else
than the person involved but on their request (Belgian law) (of
age!)
Conditions : voluntary, considered and repeated! + a condition of
continuous and unbearable physical or mental suffering that
can not be stopped. The suffering has to be a consequence of a
severe and incurable affliction or of an affliction caused by an
accident or a disease.
So : usually terminal patient
Objective = terminating life!
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De Bosschere Christine – IPLA 2014
Plan of action !
The doctor has to :
consult with the patient … palliative filter has to be used…;
Being convinced of the continuous mental and physical suffering and having
multiple conversations about this with the patient…;
consulting another, independent doctor;
The second doctor is a psychiatrist or a specialist of the affliction…;
discussing the request with the nursing team or members of the team (at
least 2);
The request has to be in writing!
Writing down everything in the medical file.
period between the written request and the implementation of euthanasia
:at least one month; If the patient is terminal, no set period of time is
prescribed…
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De Bosschere Christine – IPLA 2014
Important difference with palliative
sedation!
Is NOT part of strict medical actions**and no doctor
can be obligated to perform euthanasia.
**medical action: any action intended to or supposed to intend to examine the condition of
health of a human being, or tracking diseases and flaws, or making a diagnose, setting up or
implementing a treatment of physical or mental, real or supposed condition, or inoculation.
AND no other person can be forced to cooperate in
committing euthanasia!
Also pharmacists and nurses can not be obligated to
cooperate.
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De Bosschere Christine – IPLA 2014
Concretely ? (differences in different countries)
best intravenously (takes maximum 15 minutes)
principle: 1. induce coma
2. cause respiratory arrest
3. heart arrest
Medication :
1. hypnotics : barbiturates or benzodiazepines e.g. Pentothal® : 100 à 200 mg. insert in bolus
(check sleep!)
2. muscle relaxants :Nimbex®
(before : Pavulon®)
3. after a few minutes overdose of Pentothal®: about 1800 mg.
(generally: 20 mg./kg. body weight)
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De Bosschere Christine – IPLA 2014
euthanasia and medical actions at the
end of life
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De Bosschere Christine – IPLA 2014
Afterwards
 Legal registration form has to be sent to the
federal commission for control and evaluation
within four workdays.
 Death certificate : natural death !
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De Bosschere Christine – IPLA 2014
Specific role of the nurse
 Every nurse is open to a number of direct and indirect requests for
assistance by the patient and if necessary will have an (exploring)
conversation….
 Every nurse informs the treating physician…
 Every nurse is informed of the procedure, and is able to fully inform the
patient and their beloved ones about the questions they ask (within the
nurse’s competences!).
 Every nurse provides a careful report in the nursing file.
 For reasons of conscientious objections a nurse has the right not to
participate in the decisions or the implementation of euthanasia.
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De Bosschere Christine – IPLA 2014
Euthanasia in a Palliative Context –
Belgian Vision
no longer a two-track policy
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A worthy death is everyone’s right and part of palliative care.
Good palliative care is making a mild death possible; this means that
euthanasia can be seen as one of the outcomes of a decision process
regarding care for the end of life.
Autonomy of the patient is very important
The whole picture, and family history of a patient are very important in
this respect; euthanasia is more than the implementation of a law and
filling in the proper documents – it is part of a team’s tasks.
Very controversial in other countries: also legal in the Netherlands
PAS legal in Oregon, parts of Australia, Switzerland,Netherlands
De Bosschere Christine – IPLA 2014
Background - further study – hot topics…
Euthanasia and dementia?
Euthanasia and psychiatric patients?
Euthanasia and minors? (f.e. neonates…)
Has euthanasia become a right ?
The right to refuse treatment ?
…
Panel discussion on ‘Euthanasia’ with professionals
from the workfield (28 th January 2014)
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De Bosschere Christine – IPLA 2014
Federation made a framework
MDEL
MSD
Medical decisions at end-of-life will be medical supported dying! Cf.theme 5
(Thursday)
MDEL
Results of the SentiMelc Study (20052006) : a scientific
research about ‘dying in
Belgium’, a unique
study not alone in
Belgium, but also in
Europe
‘The death bed
in Belgium’
Lieve Van den Block, Nathalie
Bossuyt, Viviane Van Casteren,
Luc Deliens
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De Bosschere Christine – IPLA 2014
New!! Framework of the Federation
M.S.D. : medical supported dying
september 2008
 Why renewal of vision?
‘ Because we saw that there still was a large misfiring
for example the difference or the border between pain
suppression and euthanasia or between euthanasia
and leaving behind a making life longer- treatment. So
it was really necessary to make a clear term
framework with the accent on medical supported
dying.’
(Prof. Broeckaert B., 2008)
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De Bosschere Christine – IPLA 2014
It is of the largest importance that not only at
euthanasia but also at that
many questions for which are none developed, legal
procedures there foresee, the largest possible
correctness are aimed at. Here too the voice of the
patient must play a central role!
½ of the patients who died in an expected way
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De Bosschere Christine – IPLA 2014
1. Abandon decisions which will make
life longer 16%
 Not starting up or continuing a curative
treatment or a treatment which makes life
longer.
 Not-treatment decision.
‘the doctor decides not to start a treatment or decides to stop the treatment,
because these actions do not contribute to solving the medical problem or
maintaining and improving the patient’s medical condition’
 Refuse treatment
the patient refuses…
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De Bosschere Christine – IPLA 2014
2. Pain- and symptomcontrol
 Painsuppression
28%
‘administering analgetics and/or other medication in requires doses and
combinations to control pain in an adequate way ‘
 Palliative sedation
11% (1/2 without fluid and feed)
‘administering sedatives in dosages and combinations necessary to
adequately control one or more refractary symptoms’ (untreatable
symptoms; these can be physical as well as psychosocial, emotional or
spiritual symptoms)
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De Bosschere Christine – IPLA 2014
3. Active termination of life
 Euthanasia 1,3%
‘the wilful life-termination actions by someone else than the person involved but on their
request’ (Belgian law)
 Assistance in suicide (In the Netherlands is this also in the law of euthanasia )
‘cooperate wilfully in an intentional termination of life actions by the person concerned ‘
 Active termination of life without the patient’s request
1,6%
‘wilfully termination of life , act by another then person concerned, not on his request ‘
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De Bosschere Christine – IPLA 2014
PALLIATIVE CARE IN BELGIUM
De Bosschere Christine
Reflections : situation anno 2014!
Organised palliative care is no more a
dream but a real fact!
(receiving government funding)
 15 networks
 as many home care teams
 dozens of teams in hospitals and rest homes
 5 day care centers
 more than 30 palliative units
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De Bosschere Christine – IPLA 2014
10 years law on palliative care
 Because of this law and by the funds of
government
 Quality in end-of-life !
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De Bosschere Christine – IPLA 2014
Increasing professionalisation
 research ensure continuous evaluation of care and
refinement
 universities to ensure a strong scientific basis
 care path palliative care (in hospital/home care)
 directives f.e. for ‘palliative sedation’, ‘dyspnea’, ‘death rattle’…
 spacious and high quality training offer
 f.e. postgraduate for doctors, banaba for nurses…
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De Bosschere Christine – IPLA 2014
Also for population palliative care is
natural… clear positive evolution!
 Also with regard to euthanasia palliative care
teams has become a point of contact
Law on euthanasia since 2002
Palliative care is often a complex and always personalized care
with attention to all facets of life and all aspects of suffering.
Euthanasia questions find their place in it.
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De Bosschere Christine – IPLA 2014
Results of research : 5th place for Belgium
 Fliece-project (Flanders Study to Improve End-of-life Care and Evaluation Tools) =
Follow-up Melc-project (showed us some points of improvement f.e. senseless
hospitalization…)
 Objectives : formulate concrete directives for professionals;
develop intervention methods…
 This project started in spring 2011 en will end in 2015
www.fliece.be
www.eiu.com (Study ‘The Quality of Death : Ranking end-of-life care across the
world’)
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De Bosschere Christine – IPLA 2014
Another
important fact :
ageing!
Document for
advanced care
planning!
(also for not-cancer
patients!)
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De Bosschere Christine – IPLA 2014
Workload rises for our palliative teams
Conclusion :
We need more staff in our palliative care system! (more specialised nurses and doctors…)
Some ask extension of the law on euthanasia but first we need extension of
support from government (more funding) to keep on the high quality of our
palliative care.
And this for everybody!
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De Bosschere Christine – IPLA 2014
Thank you for your attention!
Working with dying people is certainly not easy, but it also helps you to see a lot of things in your life in perspective :
It might sound odd, but by working with death I feel like living my life to the fullest and I live a lot more intensive...
Pallion, 2OO6
It remains a fascinating challenge !
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De Bosschere Christine – IPLA 2014